Clinical Pathway Group Reports f145f

Clinical Pathway GroupReports 2008

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CONTENTS

PAGE

Foreward 3

From Good to Great 4

Birth Clinical Pathway Group 9

Children’s Clinical Pathway Group 21

Staying Healthy Clinical Pathway Group 35

Urgent Care Clinical Pathway Group 53

Planned Care Clinical Pathway Group 81

Mental Health Clinical Pathway Group 91

Long Term Conditions Clinical Pathway Group 109

End Of Life Clinical Pathway Group 125


FOREWORD

I would like to personally thank all those colleagues who

have given their time to contribute to the Our NHS Our

Future review and to the reports of our clinical pathway

groups. I believe that this has been a very important

exercise for us, as it has re-emphasised the importance

of clinical leadership, at a time when we are trying to

ensure that the success of the NHS is measured in

terms of the outcomes for patients; the quality and

safety of services.

This report brings together the reports from our eight clinical

pathway groups. At the end of May we will be publish our

response to Lord Darzi’s review. We hope that ‘Healthier

Horizons for the North West’ will use to spark a debate that

will lead to real change and improvements in health and

health care for people in the North West. The reports from

our clinical pathway groups and the feedback we have been

given during this process have helped us to formulate our

vision more clearly.

Thank you to the chairs of the clinical pathway groups for

their support for the review. In particular I would like to thank

Dr Steve Ryan, medical director at Alder Hey Children’s

Hospital, who as chair of the children’s group took on the

role of ‘chair of chairs’ and has been a very enthusiastic

ambassador for Our NHS Our Future in the region and at a

national level.

Mike Farrar

Chief Executive

NHS North West

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The challenge for

the next decade must

be to improve quality

and making sure

additional resources

provide the best

possible services

for patients.

❝

❞

From Good to GreatOver the past seven months, the NHS in the North West has been part of a once-in-a-generation review of itsservices. Launched in September 2007 by Lord Ara Darzi, Our NHS Our Future (ONOF) aimed to put clinicians andtheir patients at the heart of the NHS; improve patient care and safety; ensure care is more accessible andconvenient; and establish a vision for the future of the NHS in time for the 60th anniversary in July 2008.

In the North West, we saw this as an opportunity to improve the quality of care for our region and close the health gulf whichexists between us and other parts of the country. In some areas of our region, people can expect to die 10 years earlier thanin the most prosperous areas of southern England - and this gap in life expectancy is preventable.

Overall standards and the quality of care in the NHS are improving, thanks to the hard work of healthcare staff. Our challengenow is to move NHS services in the North West from “good to great”; and at the same time make sure that front-line staffsuch as doctors, nurses, therapists and social care staff are leading these improvements in the interests of their patients andclients.

Over the last 10 years, there has been a big increase in spending in the NHS with dramatic reductions in waiting times -partly due to increased numbers of staff and new ways of working. There have also been improvements in the quality of care,for example for patients with heart disease and cancer. Survival rates for people with heart disease have improved becauseof better treatment in primary care, more widespread use of preventative treatments, such as cholesterol-reducing drugs,more people quitting smoking and improved quality of interventions.

Generally, the focus over the last 10 years has been quantitative; putting more money, more staff and new equipment into thesystem. Whilst this has led to some dramatic improvements, the challenge for the next decade must be to improve qualityand make sure additional resources provide the best possible services for patients; and to make big improvements in thehealth of our citizens.

How did the review work?

We established clinical pathway groups to look at eight key health issues that affect people at different stages in their lives,each led by an expert from health or social care. The groups covered: birth, children, staying healthy, long-term conditions,urgent care, planned care, mental health and end of life. They looked at what can be done to ensure best practice is useduniversally in our region, so that people can get the best standards of care.

As part of this process we asked NHS staff, patients, the public and stakeholder organisations about their views. The finalreports from our groups have informed our vision for NHS services in the North West.

In the North West we took a programme management approach to delivering the review. The diagram below outlines thisapproach, and shows how far reaching the programme of work was. We have followed the RAID model; Review, Agree,Implement, Demonstrate and Disseminate.

NHS North West NHW Review Programme Structure

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SHA FOCUS GROUPS

NHS NW REVIEW BOARD

CLINICAL & STAFFPARTNERSHIP

PUBLICENGAGEMENT Constitutional Debate - (July 2008)

INDIVIDUAL ORGANISATION ENGAGEMENT (CEO LED)

LONG TERMCONDITIONS

END OFLIFE

PLANNEDCARE

URGENTCARE

MENTALHEALTH

STAYINGHEALTHY

CHILDBIRTH

OTHERSIND.

SECTORLAVOL.SECTOR

SOCIALENTERPRISES

PRIMARYCARE

STRATEGICPARTNERS

FTsMENTALHEALTH

TRUSTNWASPCT

CLINICAL PATHWAY GROUPS

DELIVERATIVE EVENT (March 2008)

North West Congress (November 2007)

SC

EN

AR

IOP

LAN

NIN

G

Reasons for change

There are still major inequalities in health and wellbeing inour region. Our country lags behind many countries intreatment outcomes. For example, although we havereduced deaths from heart disease, other countries havemoved more quickly to adopt new treatments such asangioplasty.

Here in the North West we still have the highest rates forearly deaths from heart disease and stroke, for long termmental health problems and alcohol-related hospital stays.A baby boy born in some parts of our region will live 10years less than a baby boy born in other parts of the countrythat enjoy better health.

The NHS as a whole is behind the rest of the EU for survivalrates for cancer. 77.6% of women in England diagnosedwith breast cancer will still be alive after five years - but thisis 82.7% in France and 79.5% on average across Europe.

For lung cancer, only 8.6% of people will be alive five yearsafter diagnosis - but this compares with 12.8% in Franceand 10.2% across Europe. In the North West alone there are1,334 excess deaths from cancer each year, compared toother parts of our country.

But even across the NHS there are unacceptable variationsin the quality of care people receive. Three years ago, anational report on stroke care set out the quality standardsfor care we should expect across the UK and found thatmany hospitals fell short. A further audit published in 2007showed there had been little overall improvement; therewere some notable exceptions to this in the North West,however in some areas the quality of care had deteriorated.Even in the best performing part of the country, the NorthEast, only 60% of hospitals are meeting a range ofstandards.

The NHS can be inconvenient and difficult toaccess

As a region, we have far fewer GPs compared to otherregions in the country. On top of all this we know that theconvenience of services provided to patients needs toimprove. An Ipsos-Mori survey conducted in 2006 showedthat 26% of patients were dissatisfied with the provision ofurgent out-of-hours care.

We know that people want more convenient services - alongthe lines of the convenience they now experience fromsupermarkets, airlines and other service companies.

Patients often do not know what to do, where to go or whoto contact if they have a more urgent - but not lifethreatening - illness or injury outside normal GP hours. Wealso know that for more routine matters some patients find itdifficult to see their GP in normal opening hours.

Disease patterns are changing and so is thepopulation

As the population ages and lifestyles generally are becomingunhealthier, we are seeing a large increase in the numbers ofpeople with long term conditions. Long term conditionsinclude diseases such as diabetes, heart disease, asthma,respiratory problems, AIDs and cancer.

We need to get much better at treating patients with theseproblems. Patients with long term conditions are responsiblefor nearly 8 out of 10 inpatient bed days. More treatmentshould be available for these patients within the communityso they can avoid needless hospital admissions. If we canget this right, we can provide better control for them of theircondition.

New technology and treatments are on the way

There are new technologies around the corner and we wantto be able to take advantage of them.

Wireless technology will allow an increase in remotemonitoring of conditions, for example the Smart Shirt, whichmonitors heart rate and temperature and relays results to anoperator.

The expansion of non-invasive surgery is reducing the risk ofinfection and the need for lengthy post-op recovery.

It is clear that we are at a point where changes need to bemade to the way that health services are delivered. Thereare some great opportunities to improve the quality ofservices; and these need to be led by front-line staff onbehalf of their patients.

What have we learnt?

The feedback from the engagement process with patientsand the public highlighted a real pride in the NHS. There issupport for the aims and recommendations of the clinicalpathway group reports. The main issues raised by ourpatients and the public were:

• Getting the basic things right, such as a clean environment and competent staff

• More flexible services to fit in with their lifestyles

• Concern over levels of funding and resources

• Waiting times for treatment

• Getting the latest treatment and drugs

• More needs to be done to help people make healthier choices

• More self-testing kits and health checks

• People should be penalised in some way for regularly missing appointments without good cause

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Our stakeholders and partners have been extremely positiveand have welcomed the opportunity to influence theoutcomes of the review. It is clear that health services areprovided most effectively when the NHS, local authoritiesand the voluntary sector are working jointly to commissionand provide health and social care. The main points raisedby our stakeholders are:

• Support for Lord Darzi’s vision for the NHS in the 21st Century i.e. fair, personalised, effective, safe, tackling health inequalities and locally accountable

• Build on existing strengths and best practice

• Tackle health inequalities and barriers to accessing services

• Ensure personal and clinical services are designed around patients

• Integrate public sector working with NHS practice

• Focus on prevention

• Develop and nurture relationships on all levels with partner organisations

• A long term approach to developing and delivering services will deliver efficiency and value for money

• Our stakeholders and partners are eager to work to add value to NHS services

Stakeholders are willing to work towards patient-focused,high quality services that offer value for money

Common themes

The clinical pathway groups highlighted many examples ofexcellent practice in each of their areas and consideredreasons why this good practice is not widespread across theregion. A number of issues common to all the groupsincluding:

• Wellbeing, prevention and self care are increasingly important, both on a population and an individual basis

• The quality of some services is patchy across the North West. Quality standards and evidence based practice should be agreed for all our services

• Everyone should have the same opportunity to access treatment, regardless of where they live

• Bold, inspirational clinical and managerial leadership is required to deliver change

• Organisational boundaries and funding incentives can hinder high quality pathway care

• Commissioning across sectors needs to be more flexible to allow changes in service provision

• Information and data systems need to allow data to be shared across organisations and sectors

• Our workforce needs to be more flexible so that it can operate across care pathways not organisations

• We should break down any barriers between professions and care settings to create a more personalised and tailored care setting

• Changing pathways of care are inevitable as new ways of taking services closer to patients develop and new technologies arise that need highly specialised skills andfacilities

Acting on the recommendations of the clinicalpathway groups

‘Healthier Horizons for the North West’ sets out theconsiderable progress that has been made in the regiontowards better healthcare and health for our citizens. Werecognise that it is time to steer a new and more radicalcourse and to focus much more on promoting health andpreventing ill-health.

Many of the recommendations from the clinical pathwaygroups need to be implemented over a 12 month period inorder to “make today healthier”. Healthier Horizons setssome short, medium and long term targets forcommissioners of services.

We hope that these reports will be a useful resource for ourclinical colleagues and social care staff, to help them beginexploring how to implement changes that will improve thestandard and quality of care.

The next step is to involve NHS clinicians and leaders, front-line health and social care staff, key partners andstakeholders so that we have a coalition for moving forward.

For more information

If you would like to be added to the distribution list forfurther updates about Healthier Horizons for the North Westand the North West ‘vision’ for health and health care,please email: [email protected]

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9

EXECUTIVE SUMMARY

The North West birth clinical pathway group has focused on the development of a core maternity

pathway, which will champion and support normality in maternity care. The group presents a practical

pathway of care set in the context of current policy direction. Central to the work is the named midwife

who is part of a midwifery team, offering services in community settings with access to specialist

services in consultant led units. The focus of the midwifery team is to provide care that is responsive to

the different needs of women and their families; and to ensure that women receive appropriate

information and support to make informed choices throughout their care. The group considered the

options for place of birth and has developed principles for different models of provision.

Particular attention is given to ensure that vulnerable womenare able to access core support services, as well as thespecialist services they need.

In developing an extended public health element to themidwifery role, the recommendations from the SavingMothers’ Lives enquiry (2003-2005) have been taken intoaccount, along with the new PSA target for earlyassessment in pregnancy.

Commissioning partnerships between local authorities andthe health service will need to be strengthened to ensure theprovision of maternity care in community settings; andshared roles to offer support services that span acrosseducation, social care, health, independent and thirdsectors. Services should be accredited and monitored in

terms of safety and quality.

The value of a shared electronic record to improvecommunication across community and hospital services isemphasised as a key enabler for this model of care. One ofthe main barriers to progress is the need to establish a tariffto support community based midwifery led services, andmore specialist services, which reflect the complexity ofcare for women with multiple problems.

Workforce changes will include an appropriate number ofmidwives and maternity support workers, to provide anextended and more personalised service for women.Different models of medical training will need to beconsidered to support cover for obstetric services.

Normality at the centre ofresponsive and equitable maternity care❛

❜


Birth ClinicalPathway Group

The main recommendations contained in this reportare:

• The development of a ‘core maternity pathway,’ which promotes normal birth and is delivered in a community setting

• An enhanced role for the midwife that includes a public health approach to care along with greater autonomy in midwifery led services

• Strong partnership working between the community, hospital, social services, education and the third sector, toensure those women who require specialist services can access the services they need without delay

• The promotion of shared decision making between women, midwives, general practitioners, consultants and other specialist services

• The need for business processes to support this model of working, including shared electronic records, an appropriate tariff and a dedicated national telephone line that will direct women to local services

• The importance of effective leadership amongst professionals providing maternity care

IntroductionThe work of the birth clinical pathway group in the NorthWest has been set in the context of existing policy directionfor maternity care, which has made the case for change.The report draws on a rich evidence base outlined in thereference section, Appendix 3.

The group is committed to a practical and flexible pathwayfor women that embraces partnership working, enhancesthe role of the midwife for normal birth, and ensures aresponsive and equitable service for women in the NorthWest.

According to Hospital Episode Data, in 2006 approximately84,600 babies were born in the North West, mostly within 22hospital trusts. Four of those hospital trusts currently offerstand alone midwifery led birth centres as a choice forwomen. Co-located midwifery led units are in place in someobstetric units and further co-located units are planned. Thenumbers of home births vary between PCT areas from aslow as 1% to as high as 10%.

Core Maternity PathwayThe core maternity pathway starts with preconception careand a positive pregnancy test and finishes six weeks postdelivery. The seven sections below describe a service thatthe birth clinical pathway group recommends as a minimumstandard for adoption across the North West.

Preconception/positive pregnancy test

Everyone should have access to generic preconceptionadvice that is available as part of the school and collegecurriculum, in pharmacies, children’s centres, extendedschools, general practice and even leisure centres. It shouldinclude advice on:

• Stopping smoking

• Alcohol

• Healthy weight, diet and exercise

• Folic acid

• Medicines management

• Sexual health and contraception

• Illicit drugs

• Mental health promotion

The value of preconception advice is recognized, particularlyfor migrant women, obese women, women undergoing IVF;and those with social health problems and long termconditions such as diabetes, epilepsy, cardiac disease,autoimmune disease and mental health problems (CEMACH2000-2002, CEMACH 2003-2005). These more vulnerablewomen may be advised to access their existing services orbe referred to specialist services before they conceive.

Raised public awareness in colleges, schools, shoppingcentres, children’s centres, general practice, through localhealth trainers and so on, will help support women and theirfamilies to understand what to expect in pregnancy, and incaring for an infant, including:

• Normal birth and the choices available on the core maternity pathway

• What happens when specialist services are required

• How midwives and other health professionals can help women make appropriate and safe choices during pregnancy

• How to access information about pregnancy and caring for an infant

When a woman has a positive pregnancy test, she will beable to contact a midwife at a minimum in the followingways:

• A national telephone line, which will direct women to local midwifery and pregnancy related services, including termination of pregnancy services

• Information available with pregnancy kits

• Through their local pharmacy

• Through their general practitioner

• Through their children’s centre

• Through an IVF unit

• Through early pregnancy units

The midwife will be able to access all relevant informationfrom primary care records, to ensure that the woman hasaccess immediately to appropriate antenatal care. This isparticularly relevant if a woman has an existing medicalcondition, is vulnerable or disadvantaged (CEMACH 2000-2002).

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Named midwife and the role of the midwifery team

Every woman will be assigned to a named midwife, who willbe the woman’s key contact during pregnancy. A teammanagement approach to the case load of the namedmidwife will be in place to ensure continuity of care,particularly when the named midwife is not available.

Supervisors of midwives will play a role in supporting themidwifery team (CEMACH 2003-2005).

The named midwife will be part of a wider midwifery team,which will offer cover for each other and retain competencesto provide care throughout the core maternity pathway,including antenatal, intrapartum and postnatal care.

The midwifery team will be supported by specialist midwivesappropriate for the area they serve.

It will be the responsibility of each individual involved in thewoman’s care, to ensure that electronic and paper recordsare kept up-to-date. The team will be key to co-ordinatingthe woman’s care.

They will be linked to general practice, hospitals andchildren’s centres, and work closely with health visitors andother healthcare professionals and support workers, toensure a multi-agency approach to care.

The midwifery team will have a pivotal role to play in tacklinghealth inequalities, and will build the capacity to reach out todisadvantaged women. They will deliver services that aredesigned to be responsive to all communities, thus ensuringbest outcomes for mother and baby (CEMACH 2003-2005).

The team will have a public health responsibility to provide:

• Breast feeding support and advice (UNICEF Baby Friendly)

• Support with smoking cessation during pregnancy

• Mental health assessment and direct access to a localmental health pathway (CEMACH 2000-2002, Antenatal and Postnatal Mental Health Guidelines, NICE )

• Weight management advice with access to dietetic services, local authority services and the voluntary sector (CEMACH 2003-2005).

The midwifery team will work in partnership with theconsultant led obstetric team. Where an opinion is soughtfrom an obstetric unit, this will not automatically result in atransfer of care. Unless otherwise indicated, women willcontinue on the core maternity pathway once concernsabout care have been resolved (CEMACH 2003-2005,Antenatal Care Guidelines NICE, Maternity Matters).

Antenatal and postnatal care should be delivered by themidwifery team, in a setting agreed by the woman andmidwife. This may be at a children’s centre, in generalpractice or the woman’s home. It may be in another settingthat provides core maternity care, such as an obstetric unitor stand alone birth centre, depending on localcommissioning arrangements.

All women should be supported by a midwife throughoutlabour and birth. This may not be the named midwife, butshould if possible be a midwife the woman has met beforeand who is part of the midwifery team. Women in labourshould have one to one care (Intrapartum Guidelines NICE,Maternity Matters). A woman should not be left alone inlabour, with the exception of agreed short periods, or if the

woman requests to be left alone (Intrapartum GuidelinesNICE). The midwifery workforce will need to reflect acommitment to this level of service (Safer Childbirth).

In order to enable midwives to undertake this role there willbe a requirement to:

• Maintain effective communications with the wider team

• Develop caseload weighted workloads according to the needs of families

• Develop clear thresholds for the midwifery role, which enable close multi-agency working with other key professionals. For example, accessing emergency psychiatric services following an acute episode and going on to work closely with community mental health service, whilst retaining the principles of the core maternity pathway and offering the woman the specialist services she requires (CEMACH 2000-2002)

• Make links to the wider community, including education and social care services, to address issues such as contraception and teenage parenting and to promote wellbeing (CEMACH 2000-2002)

• Work in the community to access services where women may wish to receive their care (Maternity Matters)

• Ensure there are sufficient maternity support workers or similar roles, to assist midwives, by undertaking a range of support tasks that enhance the service from the midwifery team (Maternity Matters)

• Be trained to undertake risk, needs, preferences and benefits assessments and develop comprehensive personalised care plans

• Undertake training in motivational interviewing and brief intervention skills, which will build capability to tackle difficult lifestyle questions and offer advice or information in a tailored way

GPs will continue to see those women who choose to visitthem following a positive pregnancy test. They will advisewomen who have pre-existing conditions, particularly if theyare taking medication that may need to be changed duringpregnancy. At the earliest opportunity, the GP will refer thewomen on to the midwifery team and access specialistservices where appropriate. Throughout pregnancy the GPwill continue to provide healthcare beyond pregnancyissues. The GP will not be expected to respond to homebirths or births in a stand alone birth centre where medicalintervention is required. In such circumstances, women willbe transferred to a consultant led obstetric unit. In order forthis process to be effective, the midwife must be able toaccess the whole patient record in general practice and referto the GP for advice.

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Antenatal care

All women will be encouraged to undertake their firstappointment at or before 12 weeks, and at that appointmentwill be encouraged to agree a care plan (Antenatal CareGuidelines NICE, Maternity Matters).

All women will be offered an individualised risk, needs,preferences and benefits assessment. Discussions regardingthe choices available to the woman and her familythroughout pregnancy and birth, will be based on this andsubsequent assessments.

Initial assessment will also take into account any issuesregarding safeguarding.

All women will be offered care based on the NICE AntenatalCare Guidelines, unless their particular circumstances orpreferences indicate otherwise.

Women who require specialist services following risk, needs,preferences and benefits assessment will receiveindividualised care, alongside the core maternity pathway.

Where demand for services makes this viable, dating andanomaly scans should not require women to attend hospital.Provision should be made in a community setting toundertake these procedures (Our Health, Our Care, Our Say,Maternity Matters).

Where there is sufficient demand, specialist hospital servicesshould provide outreach specialist staff to support womenand midwives outside a hospital setting (Maternity Matters).

The midwife will discuss choices of place of birth based onthe risk, needs, preferences and benefits assessment, bothin early pregnancy and at the pre-birth visit. Choice of painrelief should be included in these discussions (MaternityMatters).

The midwifery team will encourage women and theirpartners to attend parent education classes, directing themto local services that may be provided by the team, hospitalservices or the third sector.

Birth

Women will be able to contact their named midwife ormidwifery team using a local 24 hour telephone service as asingle point of access.

The named midwife, or another midwife who is part of theteam and known to the woman, will undertake a risk, needs,preferences and benefits assessment in early labour. Thismay be in the woman’s own home or in the midwifery ledunit. The midwifery workforce will need to reflect acommitment to this level of service.

Women should have a range of choices during labour andbirth, including pain relief and the use of birthing pools(Maternity Matters, Intrapartum Guidelines NICE).

If complications develop and transfer is required duringlabour, clear and agreed local protocols for transfer must bein place. Decisions should be made according to the needsof, and in partnership with, the woman and her family(Maternity Matters, Intrapartum Care Guidelines NICE).

Regional audits should be in place to monitor the outcomesfor mother and baby of transfers during labour.

Communication flows should be in place between healthprofessionals, women and other agencies includingopportunities to debrief and feed back.

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Postnatal care

The named midwife or a member of the midwifery team willvisit the woman in her home, on the day following dischargefrom the place of birth (Postnatal Guidelines NICE).

A risk, needs, preferences and benefits assessment will beundertaken, and a programme of postnatal support put inplace based on NICE Postnatal Care Guidelines. This willinclude referral to specialist services if required.

The health visitor will be introduced to the family at a timeappropriate to the needs of the family. For vulnerablewomen, this referral will take place in the antenatal period(NSF for Children, Young People and Maternity Services).Where antenatal care has been undertaken in a children’scentre, the health visitor may already be known to the family.

Handover from midwife to health visitor should be carefullymanaged, making use of electronic information, andresponsive to the needs of the woman and her family.

Postnatal care will be delivered by the midwife and healthvisitor in a settling agreed by the woman and healthprofessional. This may be at a children’s centre, in generalpractice, the woman’s home or in another setting thatprovides core maternity care, including a birth centre orhospital setting depending on local commissioningarrangements (Maternity Matters).

Susan’s StorySusan is 15 and discloses to her form tutor that she is pregnant. The teacher encourages Susan to inform her parents and arranges to meet the family the following day.

At the meeting the teacher has invited the school nurse withSusan’s consent. Susan is keen to have her baby and her mother is supportive. However, Susan is not sure when her last period was. The school nurse gives Susan the contact details of the midwifery team along with Connexions and Sure Start Plus.

Susan and her mother contact the midwife at the local children’s centre and the midwife arranges to meet Susan the same day. The midwife takes a full history and undertakes a needs, risks, preferences and benefits assessment with Susan. Susan and the midwife agree a care plan.

Susan attends an obstetric unit for an ultrasound scan, which confirms a pregnancy of 32 weeks. Susan’s bloods are normal and she has no medical or surgical history. The team and Susan agree to continue Susan’s care under themidwife in close partnership with the hospital obstetric team.

Susan’s midwife is able to put her in touch with education and social services and introduces her to her health visitor before the baby is born.

Susan goes into spontaneous labour at 38 weeks and is admitted to the co-located unit by a member of the midwiferyteam, as agreed in her care plan. She is supported in labour by her mother and has a vaginal delivery. Susan has skin to skin contact and offered to breast feed her baby. Susan’s breast feeding continues on the post natal ward.

Susan is discharged on the third day, and is visited on the same day by the maternity support worker who provides education and support in maternity skills.

The Sure Start team and education services create a package for Susan to return to full time education.

Newborn

Examination of the newborn should be carried out only bymidwives who have undertaken the neonatal examinationtraining module. All midwives should be encouraged toundertake this qualification. The examination should becarried out within 72 hours of birth.

Perinatal networks should be developed so that the needsof neonates requiring specialist services are met. Thisshould include provision for mothers where neonates aretransferred to specialist units.

Newborn screening should be provided in accordance withrecommendations from the National Screening Committee.

All newborns should have their own casenotes.

The authors of this paper would like to recommend furtherdedicated work from colleagues involved directly withneonatal services.

Specialist services

There are three types of specialist services that women mayneed to access as part of their pathway of care: generichigh risk, maternal medicine and regional specialist services.

Generic high risk: obstetric services for women withprevious obstetric complications, for example, previousCaesarean Section, stillbirth, recurrent miscarriage andprevious pre-eclampsia and so on. Women accessing theseservices will remain on the core maternity pathway andaccess specialist services as required in the consultantobstetric unit or elsewhere.

Maternal medicine: high risk obstetric services should havea named consultant or group of consultants responsible formaternal medicine, for example, endocrinology, mentalhealth, substance misuse, hypertension, obstetricanaesthesia, epilepsy and infectious diseases. Theseservices should be configured according to case mix,resources and local expertise, and provide preconceptioncounselling for complex cases. The care of these womenwill require a multi-disciplinary approach including namedconsultants (obstetric and other), specialist midwives,specialist nurses and other allied staff. There should be clearcommunication and shared care with the midwifery teamand the general practitioner (CEMACH 2000-2002, CEMACH2003-2005).

Regional specialist services: these include for example,obstetric cardiac services, respiratory services,rheumatology, fetal medicine and complicated multiplepregnancies. Such services will provide preconceptioncounselling for complex medical conditions, and whereappropriate joint multi-disciplinary clinics includingobstetricians, other consultants, specialist midwives,specialist nurses and other allied staff for antenatal andpostnatal services (CEMACH 2000-2002, CEMACH 2003-2005). Women accessing these services may still be suitablefor birth in their local referring unit. There must be clearcommunication with women and local services in thisregard.

Women accessing high risk, maternal medicine andspecialist regional services should have an agreed, detailedcare plan including management for the antenatal,intrapartum and postpartum periods. The care plan shouldcontain names and contact details of all the keyprofessionals involved in the care of the woman and her

family (CEMACH 2000-2002, CEMACH 2003-2005).

Clinical networks should be established for perinatal mentalhealth services (Antenatal and Postnatal Mental HealthGuidelines, NICE, CEMACH 2000-2002).

Where urgent care is required for acute psychiatricepisodes, the midwife or consultant will refer directly to anamed psychiatrist, and the midwife will continue to workclosely with the community mental health servicesthroughout the pregnancy. Such cases will need to beconsidered in the named midwife’s work plan.

Guidelines and care pathways should be in place forcommon conditions during pregnancy (CEMACH 2003-2005).

Routine risk, needs, preferences and benefits assessmentwill pick up families whose baby may require interventionfollowing birth, either through a maternal medical condition,a fetal medicine condition, expected neonatal issues orsocial circumstances. Such women will access local orregional support services as required, while remaining on thecore maternity pathway as routine. It is anticipated thatthese women will give birth in a consultant obstetric unitwith appropriate skilled neonatal intensive care on site.

All midwives will be trained in newborn life support andwhere transfer is required, this should be undertaken byparamedic ambulance.

In response to a 999 call, women with obvious pregnancyrelated conditions should not be taken to a unit that doesnot have an obstetric service. Women who are identified ashaving pregnancy related problems on examination onarrival at an accident and emergency unit, should bestabilised as appropriate to their condition and urgent adviceobtained from on-call teams. Accident and emergency unitswith no on-site maternity services should have policies andprocedures in place, so that obstetric advice can beaccessed in a timely and appropriate manner. These policiesand procedures should be drawn up in joint consultationwith the nearest consultant obstetric unit, and the midwiferyteam and GPs made aware of the process.

In the event of a transfer from a midwife led stand alonebirth centre, or home birth due to complications of labour,transfer should be made by ambulance to the nearestconsultant led obstetric unit. The woman’s GP or out ofhours service would not be expected to be called in thesecircumstances.

Within health communities midwives with specialist interestsin vulnerable groups, such as substance misuse, asylumseekers and refugees, should be identified and easilyaccessible for women (CEMACH 2000-2002, CEMACH2003-2005, Maternity Matters).

Women should have timely access to a specialist midwife inbreast feeding where there are feeding problems that cannotbe satisfactorily resolved by the midwifery team (UNICEFBaby Friendly).

After the loss of a baby, women and their families will havethe opportunity to be debriefed and have counselling by asenior member of the obstetric team. Midwives and healthvisitors will be trained to offer post termination andbereavement support to women and their families. Everymidwifery led birth centre or obstetric unit will have accessto hospital bereavement services, and also have staff whohave undertaken basic training.

13

Stand alone birth centres• Provide the same service as a home birth and

therefore the same principles should apply

• Stand alone birth centres should be commissioned in addition to, and not as an alternative to co-located units

• Facilities should be available within a reasonable distance from a woman’s home, and where geographydoes not support this, increased home births should be considered

• Transfer policies and procedures must be developed locally and be robust

• Obstetric, anaesthetic and specialist paediatric input are not available for stand alone birth centres and women and babies requiring specialist support will be advised to transfer to an obstetric unit

• Clinical governance arrangements should be shared with a local consultant led obstetric unit. The obstetricunit should be available to offer telephone advice as appropriate

Co-located birth centres• Every consultant obstetric unit should have a

co-located birth centre to enable women choice of a home from home experience, but with access to on-site emergency obstetric care

• The workforce should be led by a consultant midwife, be integrated and rotate with the obstetric unit, and promote a philosophy of normal birth (Safer Childbirth 2007)

• Clinical governance arrangements should be shared with the consultant led obstetric unit

• The co-located centre should be a discreet unit but beadaptable to meet the needs of women if they require more specialist care

Obstetric unit• The consultant midwife should be key in fostering

normality on the consultant led obstetric unit (Safer Childbirth 2007)

• There is evidence to suggest that increased consultant presence is linked to a reduction in fetal distress, which can lead to neonatal mortality and disability (The future role of the consultant, RCOG, December 2005)

• Recommendations set out in Safer Childbirth 2007, particularly in relation to workforce, should be implemented

• There must be facilities for providing critical care for women who need it that avoid where possible, the mother and baby being separated(Safer Childbirth 2007)

• Units should use an early warning scoring system for all acute obstetric admissions, including admissions inearly pregnancy (CEMACH 2003-2005)

• Regional specialist services for complex maternal andfetal medicine, should be provided in suitably equipped units, by adequately trained staff to ensure the highest standards of care

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❝

❞

Joan’s StoryJoan, age 32, has had epilepsy since she was 14 and was very stable on single therapy. When she and her partner John, decided to start a family, she visited her GP to discuss her anti-epileptic medication. Following a discussion on the issues surrounding pregnancy and epilepsy, Joan decided on the advice of her GP to continueon her medication, and started taking 5 mg folic acid daily.

Joan soon became pregnant with her first baby. She phoned the national pregnancy helpline, who put her in touch with her local midwifery service. Her midwife discussed her screening options and choices of care and place of birth. She discussed with Joan that in view of her epilepsy, she would benefit from the additional care offered by her local obstetric service. Joan saw her consultant obstetrician on several occasions during her pregnancy, who adjusted her medication as necessary. She continued to see her named midwife for her standard antenatal appointments. Her midwife facilitated her attendance at active birth classes.

Joan and John considered a home birth, but after discussion with her named midwife, Joan chose to deliver at her local hospital’s obstetric unit. Following a normal delivery, Joan breastfed her new baby on demand, encouraged and helped by the maternity support worker. She was given advice about safe and suitable settings for feeding and bathing her baby in view of her epilepsy, and how to access further help and support. Her medication was reviewed and she was encouraged to seek preconception advice again when she considered having another baby.

Models of Place of Birth- Key Principles

This section offers key principles for models of place of birthand should be read alongside and in addition to alreadypublished guidance (Maternity Matters, NICE IntrapartumGuidelines).

Discussions regarding the most appropriate place of birthshould be informed by the risk, needs, preferences andbenefits assessment and decisions made in partnership withwomen and their families.

Appendix 2 shows the London Review (2007) model fornormal births outside hospital and potential volumes if theNorth West were to adopt the same model; note the changein emphasis of 50% of women choosing midwifery units orhome birth following discussion with the London team.

Home birth• Women wishing to have a home birth will also have

access to community and hospital services as required for antenatal and postnatal care

• Where there is an increase in home birth, the midwifery workforce must reflect these changes

• Transfer policies and procedures must be developed locally and be robust

• Obstetric, anaesthetic and specialist paediatric input are not available for a home birth, and women and babies requiring specialist support will be advised to transfer to an obstetric unit

Interpreters should be available for all women and theirfamilies who require the service (CEMACH 2003-2005, SaferChildbirth).

Quality standards and auditAll units should contribute to an annual regional perinatalreport that is published and open to public scrutiny.

Consideration should be given to the use of the RoyalCollege of Obstetricians and Gynaecologists (RCOG)‘dashboard’ as a quality indicator.

A regional early warning scoring system for all acuteobstetric admissions including those in early pregnancyshould be considered (CEMACH 2003-2005).

The principles of the UNICEF Baby Friendly Initiative 10Point Plan should be followed in all units.

ResearchUnderpinning the delivery of the core pathway is therecognition of the importance of evidence based practice.Important research questions can often only be addressedby large multicentre research projects. All professionalsinvolved in maternity care should support audit and researchand encourage women to participate.

ImplementationThe group recommends a five year implementation plan setin three stages:

Stage 1: Commissioning shifts to local authority and community settings for antenatal and postnatal care. Introduction of an extended midwifery role and midwifery support workers

Stage 2: Enablers to be in place including IT infrastructure, tariff and audit

Stage 3: Full implementation of the core maternity pathway, including risk, needs, preferences and benefitsassessment and care plans for all women and protocolsto access specialist services

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❝ ❞Manal’s Story

Manal is in labour with her first baby. She and Amir had enjoyed a normal pregnancy and planned to give birth in the local co-located maternity unit. When Manal went into labour she called her named midwife, Julie, who made a home visit. Manal was managing well in labour and Manal and Amir, after discussing with Julie, decided to stay at home for the birth. Manal gave birth to a healthy baby girl, and Julie and the maternity support worker, continued to give advice and support to Manal and her family for the following two weeks. The maternity support worker was able to give Manal extra help with breast feeding in thefirst few days.

Enablers IT infrastructure and shared recordsCurrent IT and electronic records do not support theconcept of care across organisational boundaries. In orderfor the core maternity pathway concept to work properly,there will be a need for electronic records, booking andimages, which can be transferred across community andhospital information systems. Where specialist services arerequired, the electronic record is essential to ensure thatappropriate advice and changes in medication are recordedand shared across all disciplines, particularly when servicesare accessed at a regional level or in an emergency. Thehand held patient record is the first step towards thisconcept, but we need to take the next step to a fullyintegrated IT facilitated care record.

TariffThe payment by results (PBR) tariff to support this model ofcare, will need to truly follow the patient along the corematernity pathway, and reward community maternity careand normal birth (Maternity Matters). The tariff for morespecialist care needs to be weighted to reflect the individualwoman’s co-morbidities and level of service required.

CommissioningCommissioning maternity services should include arequirement for services to be accredited in terms of safetyand quality, in line with Safer Childbirth 2007, CNST andrecognised outcome standards and audit.

Commissioning partnerships between local authorities andhealth will need to be strengthened, to ensure the provisionof maternity care in community settings, and shared roles tooffer support services that span across education, socialcare, health, the independent sector and third sector.

Medical trainingThere is a need to move from trainee delivered to traineddoctor delivered services. Trainees will still deliver someservice, but training needs should be prioritised. Training willbe delivered by consultants, other trained doctors andtrained midwives.

WorkforceDevelopment of the midwifery workforce to reflect therequirements of a more personalised approach to care isneeded. This should include clear roles identified foradvanced practitioners and maternity support workers whoprovide additional support for midwives and do not replacejunior obstetric training.

Midwifery training needs to cover a public health module,which would support a wider portfolio of support for morevulnerable women.

Role of the named midwife and the midwifery teamThis refers to a named, registered midwife who is responsible for providing most of a woman’s care throughout pregnancyand childbirth. When not available, as a member of a larger maternity team through effective communication and access,they will co-ordinate and share the care with other midwifery colleagues, specialists, disciplines and agencies.

Role of midwifery support workersThe role of maternity support workers/maternity care assistants is to enable midwives to focus on activities for which they areuniquely qualified. They would not replace midwives, but rather develop competencies to complement the work of midwivesand other professionals in their clinical practice in all community and hospital settings and support mothers and their familiesin newborn care. They will need appropriate training and will be managed and supervised by midwives.

Susan, Joan and Manal’s Stories These are demonstration stories that represent services women with different needs can expect when the core maternitypathway is in place.

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Appendix 1Glossary of Terms

Core maternity pathwayThe core maternity pathway is a central pathway of care available for all women. The pathway is focused around risk, needs,preferences and benefits assessment at key points during pregnancy, where the woman and named midwife are able toconsider together appropriate options for care and develop a personalised care plan. Women requiring significant andongoing specialist input will still be encouraged to engage with their named midwife and community team as the pregnancyprogresses.

Figure 1 below shows the principle stages of the core maternity pathway.

Figure 1Core Maternity Pathway

Preconception Care

Positive Pregnancy Test

National telephone number directs women to local midwifery services.

First Assessment (Risk, needs, preferences, benefits)

Antenatal care (Choice of location)

Pre-birth risk, needs, and birth preferences discussion

Birth (Choice of place of birth)

Postnatal care (Choice of location)

SpecialistObstetricServices

RegionalSpecialistServices

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LIKELY DEMAND FOR MIDWIFE SERVICES - LONDON REVIEW

➧ ➧ ➧ ➧Total 85,000deliveriesper yearin theNorth West

23,000 -51,000 16 - 45,000

8 - 22,500deliveriesinmidwiferyunits orat home

LIKELY DEMAND FOR MIDWIFE SERVICESNORTH WEST USING LONDON REVIEW METHODOLOGY

➧

50% Estimate of women who choosemidwifery units or home

➧➧27 - 60% 12 - 30%

Suitable formidwifery unit delivery

Require transfer toobstetric unit in labour

➧ ➧ ➧ ➧

Total 115,000womendeliveringper yearpan-London;rising to125,000by 2016/17(baselinescenario)

33,000 -74,000

23,000 -65,000

11 - 32,000womendeliver inmidwiferyunits orat home

➧50%

Estimate of women whochoose midwifery units or home

➧➧27 - 60% 12 - 30%

Women, suitable formidwifery unit delivery

Require transfer toobstetric unit in labour

Appendix 2Shows the London Review methodology for potential normal births outside hospital and potential volumes if the North Westwere to adopt the same model (note the changed emphasis of 50% of women choosing midwifery units or home birthfollowing discussion with the London team).

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Appendix 3Antenatal care: routine care for the healthy pregnantwoman, NICE, October 2003

Antenatal and postnatal mental health: clinical managementand service guidance, NICE, February 2007

Intrapartum care: management and delivery of care forwomen in labour, NICE, September 2007

Maternity Matters: Choice, access and continuity of care ina safe service, Department of Health, April 2007

National Service Framework for Children, Young People andMaternity Services, Department of Health publication, 2004

Our Health, Our Care, Our Say, Primary Care White Paper,Department of Health publication, 2006

Postnatal care: routine postnatal care of women and theirbabies, NICE, July 2006

Safer Childbirth, Minimum Standards for the Organisationand Delivery of Care in Labour, RCOG, RCM, RCA, RCPCH,2007

Saving mothers’ lives, confidential enquiry into maternal andchild health (CEMACH), 2003 - 2005

The baby friendly initiative, UNICEF

The future role of the consultant, RCOG, December 2005

Why mothers die, confidential enquiry into maternal andchild health (CEMACH), 2000 - 2002

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Appendix 4

NAME DESIGNATION ORGANISATIONDebbie Hickling Clinical Director, Consultant Obstetrician and University Hospital of South Manchester (Chair) Gynaecologist NHS Foundation Trust

Catherine Boyle Consultant Midwife Southport & Ormskirk Hospitals NHS Trust

Leanne Bricker Consultant in Fetal and Maternal Medicine Liverpool Womens Hospital NHS Foundation Trust

Janet Butterworth Assistant Director (Choice) NHS North West(SHA Facilitator)

Denise Denoual Team Leader for Children’s Services Bury PCTHealth Visitor

John Eldred Consultant Obstetrician and Gynaecologist North Cumbria Hospitals NHS Trust

Julie Estcourt Head of Midwifery/Nursing Women Stockport NHS Foundation Trustand Children’s Division

Fran Gosling-Thomas North West Government Office (Parenting) North West Government Office

Melanie Hudson Divisional Nurse/Head of Midwifery North Cheshire Hospitals NHS Trust

Sean Hughes Consultant Obstetrician and Gynaecologist Lancashire Teaching HospitalNHS Foundation Trust

Jan Hutchinson Director of Public Health Bolton PCT

Mike Jackson Paramedic, Assistant Clinical Director North West Ambulance Service

Cally Nwosu Consultant Obstetrician and Gynaecologist St Helens and Knowsley Hospitals NHS Trust

Shamim Rose GP ( BMA), LMC Liverpool British Medical Association

David Rowlands Consultant Obstetrician and Gynaecologist Wirral University Teaching Hospital(Deputy Chair) NHS Foundation Trust

Catharina Schram Consultant Obstetrician and Gynaecologist. East Lancashire Hospitals NHS TrustMedical Director

Cathy Trinick Head of Midwifery Pennine Acute Hospitals NHS Trust

Pauline Tschobotko Head of Midwifery, Women & Child Division Blackpool, Fylde & Wyre HospitalsNHS Foundation Trust

Wendy Turner Team Leader, Health Visiting with Specialist Role Heywood, Middleton and Rochdale PCTin Postnatal Depression

Andy Watson Chairman of North Western Deanery, Tameside & Glossop HospitalsObs and Gynae Specialist Training Committee, NHS Foundation TrustConsultant Obstetrician and Gynaecologist

Angelika Wieck Lead Clinician for Perinatal Mental Manchester Mental Health and Social CareHealth Services NHS Trust

Birth Group Members

EXECUTIVE SUMMARY

The children’s1 clinical pathway group believes the health needs of children and young people in the North

West are such, that we require a transformational change in both the quality of healthcare provided, and

the wider measures taken to improve the health of children.

There is much in the region that we can be proud of; leadingthe way in a range of services and care pathways, andhaving a positive impact in improving health outcomes forchildren and young people. However this report also setsout some of the poor health outcomes in the region, andsignificant variations within the region.

It is clear that urgent action needs to be taken if we are toarrest levels of health inequalities that begin before birth,increase in infancy and childhood, and persist into adult life.Despite record levels of investment in health, many of ourmost vulnerable, most disadvantaged children continue tohave poor life chances and health.

In order to help achieve the transformational change toimprove outcomes , we believe that those responsible forcommissioning and providing for health should commit to aNorth West vision of child and family health. Underpinningthis vision will be delivery of the fair, accessible,personalised, effective and safe services we aspire to, andthe promotion and protection of health and wellbeing.

We also believe that the needs of the family are inextricablylinked to the development of healthy children, and wetherefore also need to consider the health and wellbeing ofparents. Throughout this report where we refer to parentswe include carers. The work of the other clinical pathwaygroups should therefore be intertwined with our work andvice versa.

The group makes four broad recommendations, with a set ofspecific actions under each of these. We describe theoutcomes we expect as a result of successfulimplementation of these actions. The rest of the reportdescribes how we arrived at these recommendations, andour health needs assessment for the region.

Children’s ClinicalPathway Group

We believe that the needsof the family are inextricably linked

to the development of healthy children

❛❜


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IntroductionLord Darzi at the International Clinical Summit in Londonin October 2007 described the impetus behind the workof the clinical pathway groups as a “movement” and it isin that spirit that the members of this group haveproduced this report, listening to the voices of childrenand young people.

We see it as a manifesto for transformation of child life andhealth in the North West. We believe theserecommendations can make children’s health andhealthcare more personalised, more advanced, increase theethos of care and ensure we create the right careenvironment. These recommendations can, we believe, beused by commissioners, providers and communities to helptransform the health of the children of the North West,improving outcomes as well as quality and safety of care.

We believe we need leadership, innovation and engagementto achieve these aims. By leadership we mean constantlychallenging the status quo and traditions and removingbarriers to progress. By innovation we mean developing andusing all our innovative talents, whether that is in our staff,our partners or our local communities. It also meansaccepting new technologies, breaking down barriers andinnovating the way in which services are commissioned. Byengagement we mean placing our children and youngpeople at the heart of our decision-making. We areespecially keen that young people are not just our focus butbecome the authoritative voice that speaks to us about theircircumstances, their needs and the way they would like theus to commission and provide their services: “Our health,Our say”. We also mean engagement across the caredelivery sector, for without this we do not believe we can getfar enough “upstream” to health promotion and prevention.

Sometimes the health needs of young people struggle to beadequately prioritised but some of the challenges facingchildren today in terms of lifestyle, public health and mentalhealth mean that they will be adding to that burden muchearlier in their adult life. Primary care commissioners laterthis year will be asked to draw up 10 year commissioningplans and visions, a real opportunity to begin thistransformation. Key achievements we wish to see in the next18 months are:

• An agreed programme for the networked, standardised provision of care for the acutely sickest children across our region supported by training, audit and underpinnedby the latest communications and medical technology

• A targeted risk-based programme at local area level aimed at improving the life chances of the youngest of children under three years of age, focussing on enhancing breast feeding rates, improving parenting behaviour and early life nutrition, and using technologies. Build on the Sure Start programme, the family-nurse partnership, health visiting and schemes like “Little Angels” underpinned by continuous improvement methods and partnership working

• Implementation of a coherent commissioning frameworkat local level that demonstrably improves the health and healthcare of teenagers through targeted and risk-based assessment – especially in relation to looked-after children

• A clear pathway with an agreed key-worker for transition to adult care of every young person with a long term condition and especially in relation to mental health care needs

• For children receiving specialised care the development of benchmarked outcome standards used to drive service improvement and commissioning

Below we set out our main recommendations, along withexpected actions and outcomes:

Recommendation 1:A public pledge to reduce health inequalities and to provide high quality healthcare to childrenand young people.

Actions we call for: • Regional and local organisations to agree to regional and

local health priorities and to be held accountable for these, as part of a regional health strategy for children and young people

• Targeted support for those individuals and communities most at risk of poor health through public health andother initiatives

• Delivery of high quality healthcare and outcomes regardless of where a child or young person lives

• Commissioners and services work in ways that ensure children, young people and their families are at the centre of service design and provision, and that their voices are heard throughout

Outcomes we expect:• Annual reductions in rates of health inequalities across the

North West, with particular improvements for those groupstraditionally most disadvantaged

• Improved health outcomes for all children and young people, enabling them to achieve success in the otherfour Every Child Matters outcomes 2

• Greater engagement of the public in the health andwellbeing of children and young people, through the pledge and through their engagement in service provision and design

• Improved signposting and support for families, children and young people to healthcare and to self-care services.

• Improved health outcomes for all children and young people

Recommendation 2: All child health services and initiatives arecommissioned jointly through local Children’sTrusts.

Actions we call for: • At a national level we ask that there is a statutory role for

Children’s Trusts to be responsible for joint commissioningand health needs assessments by all key partner agencies

• At a local authority level, we call on all partners in Children’s Trusts to set timescales for the establishment ofarrangements for the joint commissioning of all child health services; that consideration be given to how to retain existing, well-established networks for commissioning of specialist child health services

• Good practice models of integrated working across services to be built on, underpinned by strategic workforce planning and training

• The engagement of children and young people in the design, delivery and review of services and interventions

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Outcomes we expect:• More effective targeting of need through improved joint

analysis of need and provision

• More seamless service provision for children and young people, particularly for those with complex needs

• Improved outcomes for children and young people, as their health needs are considered alongside other needs such as education and training, parenting support, play and leisure, and so on

• Significantly greater integrated service delivery and planning


Recommendation 3:Clinical leadership drives the development anddelivery of high quality healthcare for children andyoung people.

Actions we call for: • All healthcare provided is evidence-based and

consensually agreed as best practice

• Clinical leadership networks are developed and supported and work with joint commissioners to develop and maintain world class child health services in the region

• Care pathways based on the model set by the Royal College of Paediatrics and Child Health are used to guide commissioning and delivery, to ensure the provision of quality healthcare within a holistic pathway

Outcomes we expect:• Greater levels of clinical expertise across the region and

across specialties

• Child health services in the North West are regarded as amongst the best in England

• Consistently high quality healthcare provided across the region


Recommendation 4:Research and evidence based practice informs theshaping and delivery of healthcare services andinterventions.

Actions we call for: • Research and the building of an evidence base for

healthcare practice and interventions, are supported and developed at all levels

• Care networks contribute to and support research, and inform targeting of research programmes

• Research considers specialist care, targeted care and universal provision

Outcomes we expect:• Commissioning is better informed by regional and local

evidence base

• Practice and service design is led by clinical best practice


The core groupThe group consisted of a wide range of individualsrepresenting different professional groups, geographicalareas, and sectors; details of the membership of group are

given in Appendix 3. All have extensive experience inworking with children and families and were encouraged tothink “outside the box”. Members were either nominated bytheir organisation, or were approached by the SHA, toensure a good representation across the sectors, disciplines,professional groups and the North West geography.

In addition, we were fortunate to be able to call on asignificant number of other individuals and organisationsand have listed these in Appendix 4. In two separate eventsorganised by the Regional Youth Work Team and Circles ofReconciliation, we also heard directly from young peopleabout the health issues that most concern them.

We expect that the multi-agency and multi-professionalpartnership approach we adopted in the review period willbe mirrored in the implementation of its recommendations.

Principles that governed our approachThe group very quickly agreed that whilst we would retainthe term ‘clinical’ in our title, to be consistent with theregional and national programme, our approach would be anintegrated, holistic one that placed the child at the centre.

We believe that all children are entitled to:• Be healthy, be safe, enjoy and achieve, make a positive

contribution and achieve economic wellbeing which are the aspirations as set out in Every Child Matters;

• The best possible life chances, as described in the United Nations’ Convention on the Rights of the Child 3.

These principles guided the work of the group as weundertook the review.

The ProcessThe group had four dedicated days set aside to help carryout the work. Led by the medical director from one of theregion’s children’s hospitals, a deputy chair from a localauthority children’s service, and supported by the SHA, wealso carried out work in between meetings, includingconsulting with our networks.

Our next task was to determine the scope of our work. Wedecided that we would describe the scope by using sixstories, which we developed to describe the health andwellbeing issues which confront many of our children andtheir families; these can be found in Appendix 1. Our storiesare not intended to be all encompassing, but to highlight keyissues for children and the way healthcare is provided. Wethink that we will be able to use the stories to engage youngpeople and others in considering our recommendations,which will be the next stage of our work. For each journeywe identified some key markers for what success wouldlook like and we used the five Every Child Matters outcomeareas to guide us.

We also considered the elements of the pathways of careincluded in the journey from prevention, identification,treatment through to palliation described by the RoyalCollege of Paediatrics and Child Health 4. We used thismodel because we felt it was very clear, can be appliedagainst any disease, condition and issue that weconsidered, and takes a preventative approach as itsstarting point.

We gave each of the children in our stories an identity andaspirations, which helped us as a group to stay focussed onthe individual child and their family, rather than simply reviewservices.

23

Within each of the stories we considered the evidenceavailable to us, national, regional, local and where possibleinternational. We also considered the information each of usgains each day working directly with children, young peopleand their families. Whilst some of this may be subjective, wehave sought to back this up with hard data.

Child Health in the North WestWhat do we know about the children of the North West?Well, there are a lot of them! In 2004 there were 1.72 millionaged 0-19 years of age, with approximately 54 per cent ofthem aged 10 or older; these numbers are predicted to fallslightly to 1.69 million in 2007, although we know that insome parts of the region the numbers of children areincreasing. Early indications suggest that this increase ispartly prompted by the arrival of migrants from the EU. Aswe develop strategies to improve child health in the region,we will have to carefully consider the needs of these newgroups, some of whom will be settling in areas that are notethnically diverse.

As well as receiving health services from a range of NHSorganisations, children also access health related servicesfrom the voluntary sector, which is very active in support ofchildren, young people and families across the North West.They provide a wide range of services as well as promotingthe welfare and interests of children and young people atlocal, regional and national levels. We heard in the course ofthe review of concerns about the quality of the physicalenvironment for some voluntary sector organisations. Allnon-acute palliative care in the North West is provided bythe voluntary sector and resourcing for this is a source ofconcern.

Two specialist children’s hospitals in Liverpool andManchester ensure that virtually all healthcare can bedelivered in the North West. Sub-regional networks in theregion provide care and transport for newborn babies.

Children are important users of health services. Within theunder 18 population however, there are differences in whoaccesses services. For example, we know that children inlower socio-economic groups are nearly twice as likely torequire emergency hospital admissions in the North West,compared with children in the more affluent families 5.About 25 per cent of all consultations in primary care are forchildren.

We were asked specifically by Lord Darzi not to considerissues of reconfiguration - and we haven’t!

The Case for ChangeCompared to other regions in England, the North West is aplace where the health of many of our children and youngpeople is poor. A detailed examination of the data by districthighlights significant variation within the region. Forexample:

• Hospital admission rates for males aged under 18 for alcohol-specific conditions were highest for Copeland andAllerdale, and significantly greater than those for Manchester and Liverpool

• ‘Frequent flier’ hospital admissions (four or more in one year) are more than 200 per cent greater for Pendle, Ellesmere Port and Neston and Bolton, than they are for Trafford and Fylde

• Infant mortality rates are 200 per cent greater in Pendle and Preston than they are in Rossendale, Trafford and Macclesfield

• The average number of decayed, missing or filled teeth for

five year olds is three times greater in Blackburn with Darwen and Knowsley, compared with Crewe and Nantwich, and Congleton

• Ethnic and gender differences will also have variations in some areas

Some of the key regional issues include:

• High rates of infant mortality

• The worst dental health at five years of age

• High rates of male long bone fractures for under 15 year olds

• High rates of sexually transmitted disease

• High rates of teenage conceptions amongst 15-17 year olds

• One of the highest annual rates for road injuries and deaths for the past three years, with more than 2,000 children aged under 16 injured and 148 under-19 year oldskilled 6;

• The emergence of alcohol as a serious threat to the healthof children 7 8 9

• 58 children and young people dying as a result ofself-harm over the last 3 years 10.

For certain groups of children, the prospect of poor health isheightened, for example, looked after children, disabledchildren, young people in the Youth Justice system, andchildren with complex needs. For many of these youngpeople, the transition to adulthood can be a daunting onefor them and their families, with the individualised care theywere previously used to not always evident in adult care.Parents describe the prospect of transition, particularly foryoung people with complex health and learning problems,as “scary” and “daunting”.

Considering our poor start in life, it is therefore notsurprising that the North West has a shorter life expectancycompared with the England average.

There are a wide range of factors which contribute to thepoor health of children. In the North West some significantrisk factors include:

• Poverty, which impacts on housing as well as household income; the data also tells us that children in lowersocio-economic groups are significantly more likely to have a hospitalised emergency admission compared with those from more affluent groups; approximately 23 per cent of children live in households considered to be in poverty and in the North West almost 19 per cent of primary school age children are eligible for Free School Meals 11

• High levels of obesity, compounded by low levels of exercise and poor diet

• Smoking amongst children and young people, expectant mothers and in the home

• Alcohol use and abuse by young people is amongst the highest in the country

• Lower breastfeeding rates

• Substance misuse – drugs, alcohol and tobacco

• Low levels of vaccination against measles compared to EU rates

• High levels of low birth weight and prematurity which are known to have long term effects on health

• High prevalence of chronic conditions such as asthma

• Changing migration patterns in the North West. We know

24

that the health of the children of some ethnic groups is poor and that access to healthcare is limited by a range offactors. This includes language barriers that obstruct the delivery of effective, safe and personalised care.

Increasing numbers of children and young people with longterm conditions will demand both a strong public healthapproach, focussing on prevention and early identification,as well as the provision of services to meet complex needs.Self care will be an important aspect of care packages.

There is growing evidence of a rise in poor mental healthamongst children and young people, as well as amongstadults, many of whom of course are parents. The NorthWest is currently the region with the highest use of adultmental health beds for 16 and 17 year olds accounting for27 per cent of the national total 12. Work is underway toestablish why this is the case, but early indications suggestinsufficient provision in crisis services and specialistprovision contributes to this. Specific groups of youngpeople, including those with learning disabilities and in theYouth Justice system, can have higher levels of risk andlower levels of service provision 13. Equally, some areasreport under representation of children and young peoplefrom black and minority ethnic communities.

Amongst all these issues, parents play a central and criticalpart in a child’s development, both physically andemotionally. Any work we do to support health andwellbeing amongst children must therefore consider whatsupport parents may need, and indeed the health of parentsthemselves where this may compromise their parentingability.

Our Main RecommendationsIn this section of our report, we explore in more detail ourfour main recommendations.

A public pledge to reduce health inequalities

Our first recommendation is that there should be apublic pledge to reduce health inequalities and toprovide high quality health care to children and youngpeople.

Taking into account the above evidence, the group is firmlyof the view that greater focus needs to be given to thedeep-rooted health inequalities in the region. We call on allregional stakeholders to drive this forward, engaging localand sub-regional networks and ensuring that the voices ofchildren, young people and their families are heard.

The role of community health services for children andfamilies is gradually changing across the country, buildingon good models of integrated working and targetedinterventions, focussing on need and risks, as well asproviding a core level of universal services. The roles of keystaff, such as health visitors, allied health professionals, GPsand others are increasingly more multi-agency, working in aholistic system of prevention and early intervention.Engagement with parents, providing information andassistance so that they feel confident around their role inpromoting health, is a key component of our approach. Weare of the view that adults thinking about parenthood alsoneed support and guidance especially, but not exclusively,around genetic counselling.

Family general practice makes a huge contribution to theprovision of health services to children in the UK. Around aquarter of all consultations in general practice are for

children. These children are typically seen by the sameprimary care team that looks after their parents and siblings.This creates a strong context for holistic family-based care,a platform on which more specialised services can buildwhere necessary. It was proposed by the Court Report 14 in1976 that the establishment of specialist paediatric generalpractitioners was a model that could deliver the vision that itoutlined. There have been recent discussions that this modelshould be reconsidered (see for example Yorkshire andHumberside children’s pathway group report).

Joint commissioning through Children’s Trusts

Our second recommendation is that joint commissioningis the way all child health services and initiatives arecommissioned, and that this is done through localChildren’s Trusts.

In the Northwest we feel that the current model ofpaediatricians and general practitioners, supported by theirrespective multidisciplinary teams has delivered effectivecare with good outcomes and, where these services workwell in collaboration, world class care.

However it is acknowledged that this is not the caseeverywhere. There is ample evidence of variations in howgeneral practitioners manage their young patients. Forexample in the Liverpool PCT area, there is a four and a halffold variation in the number of new outpatient referrals fromGP practices; there is also a six fold variation in attendancesat the A&E department at the local children’s hospital.

We feel that dealing with these variations is the key toimproving health services for most children, and meeting theexpectations outlined in Our Health, Our Care, Our Say.There is also a very clear link across to the wider agendadealt with by local authorities through children’s servicesand Children’s Trusts, and the group’s view is that jointcommissioning would generate significant synergy andbenefits in terms of outcomes.

Our aim is to bring to the children of the North West thehighest universal standards of primary care, working incollaboration with secondary care and other partners. Wherewe can deliver specialised care more locally, it makes senseto do so through the emerging multi-disciplinary teams thathave improved healthcare over the last two decades.

The Court Report recognised the need for integration ofchildren's health services, advocating “a child and familycentred service in which skilled help is readily available andaccessible; which is integrated in as much as it sees thechild as a whole and as a continuously developing person.”

Much has changed, much has improved, but much needs tobe done. We feel that this advocacy remains true more than30 years later. We need to protect and strengthen the skillsof clinical staff in specialist and non-specialist areas. At thesame time, there needs to be a stronger understanding ofthe important contribution non-NHS services make to thehealth and wellbeing of children and young people. Thesegive strong foundations for their adult lives, as well asproviding environments where personal and socialdevelopment is nurtured. It is our view that Children’s Trustsare well placed to drive this integrated, holistic approach.

As importantly, we would expect there to be a greater andconsistent engagement of children and young people inboth the commissioning of services, as well as the directprovision where their views are taken into account.

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There are good integrated models in the region, includingSure Start and Children’s Centres, where local communityengagement and participation have made a difference toindividuals and local areas.

Governance arrangements for general practitioners and forhospital paediatricians are well established, but for generalpractitioners with a special interest are still emerging. Thetime taken to train, accredit and cover the clinicalgovernance aspects of the GPSI (GP with a specialistinterest) workforce, have been much greater than expected.There are also issues with workforce planning andsuccession planning, given the small numbers of postsusually established.

We feel that the application of standards, measurement ofoutcomes, performance review and feedback in relation tothe delivery of children’s healthcare can be a strong methodto achieve our aims. Clear definitions are required of thepathways to be commissioned and of the standards thatunderpin them both in primary and secondary. Suchpathways will rely on appropriate collaborative and supportagreements underpinned by clinical dialogues. Goodexamples to take this forward are NICE guidelines dealingwith common problems like urinary tract infection, feverishillness in children and so forth. This approach can bedescribed as a hub and spokes model, with expertise for aspecific service delivered from one site, but with carereaching out to a number of different settings. This managedclinical network model allows patients to be treated closer tohome. The number and type of spokes are dependent onthe individual pathway and context.

Other barriers to developing a significant cadre of specialistGPs include lack of evidence of improved cost-effectiveness,and the requirement for a new training infrastructure. Inaddition the number of GPs coming forward, has beenlimited as changes in the GP contract have seen themconcentrate more on delivering their own practice’sobjectives. Another potential downside is the pressure thatcould be put on access times if a patient is referred on to aconsultant, if the case is beyond the experience of the GPSI.

We think there is still great merit in the family doctor conceptwhen it comes to dealing with children. The GP who knowsthe family can tailor his or her course of action in the light oftheir knowledge. A better approach might be to enhance theability of GPs to deal with more cases themselves, or withina network of colleagues based in primary care rather thanhaving to refer on.

Quality driven by clinical leadership, research andevidence based practice

Our third recommendation is that clinical leadershipdrives the development and delivery of high qualityhealthcare for children and young people. We call formeasures to ensure that research and evidence basedpractice informs the shaping and delivery of healthcareservices and interventions.

Our fourth recommendation focuses on the need to buildon best practice, and ensure that this is disseminatedmore effectively than at present, informing andcommissioning.

In terms of acute health care for children, the North Westhas significant improvement to make in raising standards ofcare. A recent survey by the Healthcare Commissionshowed that only two out of 22 Hospital Trusts were ratedexcellent 15.

During the course of this review, we also heard a range ofclinicians and NHS managers express concern that paymentby results (PbR) may jeopardise effective care pathwayimplementation and design, because of perverse incentives.We would welcome efforts for this and tariff issues to beconsidered further. We would look for systems that rewardprovision in community settings and that reduce the needfor acute interventions.

For disabled children and children with learning disabilities,there is widespread evidence that healthcare is not alwaysto a consistently high standard. There are variations inprovision across areas. We heard as well of concern thattransition to adult services can be daunting for manyindividuals and families and can be better managed. Weinclude oral health care in this category.

Overall in the UK, our children have poor outcomescompared to international standards for treatment in longterm conditions such as diabetes, childhood cancer, CysticFibrosis, Duchenne Muscular Dystrophy, and Asthma.

In relation to medicines, we know from speaking withprofessional staff that there are anecdotal safety concernsover prescribing and administration for children, and thatthere is a need to review off licence medicines.

The National Patient Safety Agency’s National Reporting andLearning System (NRLS) recorded 7,082 medication errors inpaediatrics between 1st July 2006 and 30th June 2007, withover 99 per cent recorded in general and acute hospitals. Ofthose incidents reported to the NRLS the vast majority resultin no or minimal harm (95 per cent) but around five per centcould have had significant consequences. Around 90 percent of errors result from: problems in prescribing (23 percent); administration and supply of a medicine from a clinicalarea (58 per cent); or preparation of medicines in alllocations and dispensing in a pharmacy (11 per cent).Incorrect dosing accounted for over 30 per cent of errors,which is the single biggest factor and anecdotally reflectingthe complexity of dose calculation in children, whose weightmay vary by over 200-fold from smallest to largest.

Interpretation of data from the NRLS should be undertakenwith caution. As with any voluntary reporting system, thedata is subject to bias. A proportion of incidents that occurare not reported, and those which are reported may beincomplete, having been reported immediately and beforethe patient outcome is known.

We would also want to look more at how we can supportself care, enabling children and families to take moreresponsibility and control over their medication. Withincreased training and support we should be able toimprove care. As part of this work we would recommendthat the North West children’s medicines network is asked toreview and develop these issues.

There are major shifts in how healthcare is accessed andprovided in the UK: from primary care to secondary care;A&E departments; the increasing use of observation facilitiesand walk-in centres; and accessing multiple providers forthe same illness. There is also a movement of patientstowards the specialist children’s hospitals in Manchester andLiverpool from district general hospitals.Tragically we also know from experience the risks to theindividual child when agencies fail to act in concert to meethealth needs and safeguard children. The wider approachtaken by Government to safeguarding is welcomed, butneeds to be embedded in the NHS across all services that

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come into contact with children. Leadership andprofessional competencies are essential in this complex andmulti-agency environment; developing and supporting theintegrated workforce is a critical element in meeting futureneeds. As at March 2007, there were 10,410 children in thecare of a North West local authority, and 4,480 on a ChildProtection register; this works out at approximately 30 per10,000 population aged under 18 16.

Drawing all of this together we strongly feel that care forchildren has to be based on partnerships and networks, andour recommendations reflect this. These partnerships andnetworks must straddle sectoral boundaries, embracinghealth, local government and the voluntary, community andindependent sectors. Within and across organisations wehave a strong sense that effective leadership will be a keyenabler for success.

Whilst we use the term clinical leadership to stress theimportance of professional input and direction aroundcertain conditions, we see this as operating within a holisticpathway that is not just about clinical solutions.

What Would Good QualityCare Look Like?

As a result of our deliberations and consideration of theevidence, we believe that the key features for a robustmodel of care for children and young people are:

• The model places the child at the centre and considers the needs of the child’s family to support and nurture health and wellbeing

• The model takes a holistic and long term view of a child’s needs, seeking to maximise the best possible opportunities for the individual, regardless of episodes ofpoor health and regardless of long term needs into adulthood

• The model promotes targeted prevention and equity of access; screening would be an important aspect of this work but would cover all ages

• There is a strong focus on prevention and early intervention, as well as empowering children and familiesto take responsibility for their own health and wellbeing

• Commissioning must be focussed on outcomes and undertaken in conjunction with all key partners. It will draw from an evidence base for the care provided, and the efficacy of care is constantly reviewed and improved.It will also take a more preventative approach, advocating social policy changes conducive to reduced disease-related exposure

• Clinical expertise is supported and developed across thepathways, including medicines management and public health

• Choice for children is a viable reality; care is provided close to home where this is in the interests of the child, but not at clinical risk

• All staff working with children can demonstrate an understanding of the specific needs of children including Safeguarding, and are supported to achieve world class standards of care

• The timing of transition to adult services is not solely dictated by age, but also by the maturity and individual needs of the young person; every young person has the right to become an adult in a way they feel is fair, personalised, effective and safe

• For the North West, the model overall seeks to reduce

health inequalities and where healthcare is delivered, this is to a world class standard

At a health service delivery level we would expect to see:

• Development of teams around the child with a lead professional to support personalised care and appropriate, effective and timely delivery of multi-agencycare to children and families

• Integrated care pathway and standards, for children presenting with undifferentiated acute illness in community settings

• Integrated care pathways and standards for children presenting with critical illness and trauma, including transport provision

• Utilisation of technologies to improve care; for example, telemedicine links to provide timely assessment and to support network health professionals

• Safe and effective use of paediatric medicines, underpinned by electronic prescribing and competency levels for appropriate staff

• Support to families in terms of accommodation, communication, psychological support, social support and where necessary bereavement care

• Transitional care standards across all services, providing safe and age appropriate care to young people

• An appropriate blend of universal and targeted support and intervention for children and young people, across the range of public health issues, jointly commissioned with local authorities through Children’s Trusts

At a network level we would expect to see:

• A role in feeding information back into the regional publichealth system to influence public health policy

• Minimum standards established for specialised commissioned services, to ensure equity of access and outcomes, as well as value for money

• Fully-engaged contingency planning for example for a pandemic flu

At a regional level we would expect to see:

• A clearly articulated and agreed vision for child health

• An agreement by regional agencies to support delivery ofthe vision, and a challenge to tackle an agreed set of regional child health priorities

• The championing of the health interests and needs of children, young people and their families in the North West

Implications for Delivery ModelsWe are of the view that improving the health of children andyoung people demands a holistic approach, and thereforeour response should be a collective one with localgovernment. Our recommendations should be seen as partof the joint commissioning roles of Children’s Trusts, withPCTs having a duty to ensure this happens.

The SHA should take a strategic role in ensuring thateffective networks are in place operating to the higheststandards, for example the paediatric cardiology network,the paediatric intensive care network and the neonatalnetwork. Whilst specialised commissioning functions mustcontinue at a regional level, we expect these to be donewith consideration of the holistic needs of the child as setout in this paper.

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Priority Areas and PathwaysUsing our stories, describing real life situations of children and young people, we identified six broad priority areas. The fullstories are set out in Appendix 1, but below we set out a summary of what we identified as the main enablers, blockers andoutcomes, and what the actions should be. The group was also of the view that we should give one realistic action for eachpriority area, by way of an indication of what could begin to be done locally to improve outcomes.

The priority areas are as follows:

Priority Area: Unplanned care for acute illness, including minor illness and minor trauma. See Tyler’s story

Actions Enablers Blockers Outcomes

• Development of an •The development of skills • The tariff is a disincentive • More local careintegrated care pathway and knowledge to support foracute trusts • Improved self careacross primary and specialist care in primary • A lack of clear agreed • Reduction in A&Esecondary sectors settings universal standards and attendances and in short

•The adoption of technology, protocols for community stays in hospitalsuch as Telemedicine and settingsIT for radiology and • The ability to accesspathology services, particularly out

of hours

1st action: Mandatory training framework for anyone seeing acutely ill children to cover three areas: recognition of the sick child (as “Spotting sick child” DVD); Child Protection level 1 and communication.

Priority Area: Unplanned care for critical illness – medical, surgical & trauma care. See Xiang’s story


• Development of an •PICU/HDU transport system • Transport times for • All units meet the integrated care pathway •A support network, for remote locations Healthcare Commission and network across example anaesthetics, • Finance, workforce and excellent standardsecondary tertiary sectors and cardiology governance issues • Fewer deaths and serious

• Improved bereavement care compromise delivery untoward Incidents

1st action: Identify a network lead for each spoke, who should oversee audit and critical-peer reviews; and training in spoke unit; and accept some responsibility for critical care in the spoke unit.

In order to reduce health inequalities, We would expect themodel to encourage PCTs and Children’s Trusts to developintensive support for those families at risk of poor healthoutcomes, and support for those who provide it. Theseshould be locally co-ordinated and family centred in time,place and approach.

The model will demand commissioners and providers to lookat delivering healthcare and health advice, in a range ofsettings where people want to go for example children’scentres, extended schools, shops, supermarkets, leisurefacilities and so on.

Modern approaches to pathway redesign should use world-class improvement methodology such as Lean, and sincethe North West has several institutions at the leading edgeof these methods, they could form the initial basis of anNHS Northwest internal consultancy. These inprovementmethods will be as important as those based ontechnological innovation.

Implications for EnablersThe model of care will demand a high level of integration atthe commissioning level, to meet the significant healthissues confronting children and young people in the NorthWest. It demands integrated or joint commissioning acrossthose agencies charged with providing services and care forchildren.

Children and young people’s plans, led by localpartnerships, should form an important platform for settingout an area’s intentions to improve the health and wellbeingof local children. It is critical that PCTs are genuinely

engaged in this commitment process, both from aninvestment perspective as well as being fully engaged in ashared agenda with local partners that increases lifechances for children. The role of practice basedcommissioning needs further development, includingexpolring its potential impact on improving the health andwellbeing of parents.

PCT LDP plans should be clear about resourcecommitments to child health services, so that providers areappropriately enabled to deliver those quality initiatives thatcannot be incentivised through methods such as tariff.

Commissioners are asked when developing AdvancingQuality initiatives to incorporate these recommendations.They are asked to consider developing innovative andalternative ways to meet health care needs, includingwidening the provider market for example through personalhealth trainers for vulnerable children and families.

Strengthened joint workforce planning with children’sservices is essential, whilst at the same time ensuring thathealth professional roles are properly supported anddeveloped. Workforce development should enable staff towork across boundaries and traditional sites.

Finally, we are strongly of the view that too often there is nota strong enough voice for child health at local and regionallevels. Across the sectors, leadership and a sharedunderstanding of the profound implications poor health hasin the long term on an individual are needed, to raise the barso that in the North West we can break deep-rooted cyclesof health inequality.

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Priority Area: Early years – targeted support to parents. See Jason’s story


• A multi-agency team around •Children’s Trusts to be • Lack of priority for health • Less medicated solutions,the child with a key worker responsible for this aspect promotion and prevention greater involvement of

• Choice for parents and of care, with connections to • Hospital-based clinicians parents through training andchild on integrated care adult care focussed on tariff-based educationoptions •Greater NHS staff work • Improved immunisation,

• (HV/Nurse-family partner/ involvement in Childrens • Lack of CAMHS resources dental health, pregnancymidwife) plus CAMHS/ Centres/SureStart and and adult mental health intervals and reduction in adult mental health extended schools skills resources road traffic accidents and

• Improved breast feeding •The Child Health Promotion exposure to cigaretterates, sustained to Programme smokethree months •Voluntary and third Sector

Programmes like “Little Angels”for breast feeding

1st action: All agencies to base assessments and meetings on CAF and/or ECM outcomes.This includes GPs and should be used as a marker of good practice.

Priority Area: Later years – targeted support to vulnerable young people. See Chelsey’s story


• Empowerment and •Children’s Trust to be • Need for skilled key workers • Reduced incidence of poorresilience through targeted responsible for this aspect • CAMHS resources mental health resulting inadvocacy, support & of care, with connections to • Lack of drop in facilities suicide and self harminformed choice adult care • Greater self confidence

•Tackling risk taking • Improved life outcomes forbehaviours in an integrated vulnerable groupsway

• Intensive holistic corporateparenting

•School health workforce

1st action: Introduction of Team Around the Child systems and techniques.

Priority Area: Medicines management. See Tyler’s story


• Develop electronic support •Competency-based training • Lack of electronic solutions • Reduction in medicationfor competent prescribing at undergraduate and • Delays in Connecting for errors in childrenand administration postgraduate level Health and costs • Fewer deaths and

• Trusts have different complicationssystems

1st action: The North West medicines network to be asked to develop education in training and competencestandards for the workforce, from undergraduate through postgraduate, and to work with sub-regional networksto develop implementation strategy.

Priority Area: Transition to adulthood. See David’s story


• Develop transitional care •Children’s Trusts to be • The NHS differentiates at • Effective transition for allstandards across all responsible for this aspect 16 and 18 young people; they services, providing safe and of care, with connections to • Reluctance of some adult participate with their age appropriate care adult care teams to take on 16 or 17 families from an early stage

•All vulnerable children with year olds • Reduction of risk to ancomplex needs have a • Parents’ concerns at individual’s health andSMART transition plan transfer to adult services wellbeing and optimisation

• Individualised Budgets • Lack of adult clinicians and of life chances•Transition planning using expertise in some areas

person centred approaches for example attention deficitand enabling young person’s and hyperactivity disordermeaningful involvement (ADHD)

•Better joint working between • The voice of the youngchild and adult services – person is not heardplanned handovers

1st action: Introduce transition guidelines for all health and social care provision; it should be a requirement that these are included in inspection assessments.

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Appendix 1Our Stories

The group created six stories to describe the health and wellbeing issues that confront many of our children and theirfamilies. We gave each of the children in our stories an identity and aspirations, which helped us as a group to stay focussedon the individual child and their family, rather than simply review services. They are not intended to be all encompassing, butto highlight key issues for children and the way health care is provided. We think that we will be able to use the stories toengage young people and others in considering our recommendations, which will be the next stage of our work.

With all these stories, we considered the links to the five Every Child Mattes outcomes and the priorities for action.

Journey 1 – Tyler

• Tyler has had no immunisations as his parents believe they will harm him • Tyler a 2 year old boy develops a high temperature. • His parents care for him for 12 hours, then call NHS Direct who advise that he is seen in primary care• He is then seen in primary care and returns home with reassurance and paracetamol• He develops worsening symptoms and returns to primary care as instructed• He now has an evolving purple rash• He is referred urgently to a District General Hospital by ambulance• He is resuscitated & stabilised in the accident and emergency department and then taken to a high dependency bed • He is transferred to regional intensive care unit (PICU) after a wait of 12 hours • He is on a ventilator and has 6 different drugs being given by intravenous infusions • He deteriorates and dies • His family wish to access bereavement care • His death is reported to the local safeguarding board

Journey 2 – David

• David is a 17 year old boy and has a girlfriend Miranda – a fellow pupil at his special school. He only sees her at school.His parents are in their 60s and not in good health. David wishes to be increasingly independent. David uses and loves his mobile phone and facebook

• He has complex health problems following preterm birth:• Mobility and recent fracture due to osteoporosis• Learning difficulties• Epilepsy• Gastrostomy

• Currently he is under the care of a paediatrician, with whom he has regular appointments orthopaedic surgeon, community paediatrician, nurse specialist, GP and occasionally reviewed by a paediatric neurologist; though he is fed upof going to clinic and being in the queue with babies

• He is on six different daily medications

Journey 3 – Chelsey

• Chelsey is a 12 year old girl in the care of local authority (fostering) who asks to see the school nurse as she has had unprotected sex

• She was sexually active with a 13 year old boy. Recently she had sex twice with a 20 year old man who plied her with drink

• She feels different from other children – for example she had periods at 9 years• She has had two self-harm episodes requiring admission to hospital, one during which she was intoxicated with ethanol • She smokes, is overweight and has very low self-esteem • Her school attendance is poor

Journey 4 – Jason

• Jason is a 4 year old boy born small-for-dates; not breast fed. • His mother is 21, single and has two younger children. She smokes • She has a recent new partner – her third • She gets some help from Jason’s paternal grandmother• He is a poor sleeper, relentlessly active and has challenging behaviour. He’s always tripping over and getting bruises and

also has flat feet. • His language skills are poor as are his social skills • He missed his preschool booster immunisation• Although he has a place at nursery he is a persistent non-attender• He is ravenous when he gets to nursery • He is often left in the care of a 13 year old boy who is often seen in the neighbourhood unsupervised late at night

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1 Child/young person - term used interchangeably in this report, indicating a person under 18 years of age unless otherwise stated.

2 Department for Children, Schools and Families, Every Child Matters - Change for Children, 2004, www.everychildmatters.gov.uk

3 UNICEF,www.unicef.org/crc/index_understanding.html

4 Royal College of Paediatrics and Child Health, A guide to understanding pathways and implementing networks, December 2006.www.rcpch.ac.uk

5 Regional Public Health Team, Tom Hennell, Childhood Injuries - Children under 15 (Internal Paper to NW Children, Young People and Maternal Health Board), November 2007

6 Regional Public Health Team, Tom Hennell,Internal Report, 2007

7 British Medical Association, Fetal Alcohol Spectrum Disorders - A Guide for Healthcare Professionals, 2007 www.bma.org.uk

8 Association of Public Health Observatories, Indications of Public Health in the English Regions, 2007 www.apho.org.uk

9 Trading Standards North West, Alcohol Survey of Young People June 2007

10 Regional Public Health Team, Tom Hennell,Internal Report, 2007

11 GONW, Internal Paper, 2007

12 LDP Returns, Quarter 1 2007, 1,063 of the 3,954 hospital occupied bed days on adult psychiatric wards of patients aged 16 or 17 under the care of a psychiatric specialist.

13 Healthcare Commission, A Review of Healthcare in the Community for Young People Who Offend, 2007

14 Fit for the future: report on the Committee on Child HealthServices, HMSO 1976

15 Healthcare Commission, Improvement review into services for children in hospital, 2007 www.healthcarecommission.org.uk/serviceproviderinformation/reviewsandstudies/servicereviews/improvementreviewmethodology/servicesforchildreninhospital.cfm

16 GONW, Internal Paper, 2007

Appendix 2References

Journey 5 - Jacob

• An 18-month-old boy is diagnosed with a hernia by his GP, which will need surgery. • His parents decide to use Choose and Book• He lives in Cockermouth on the Cumbrian Coast• The choices are a local district general hospital, a specialist children’s hospital or an independent sector hospital

Journey 6 - Xiang

• A recently arrived Chinese family are involved in a road traffic accident when a car runs into the mother who dashes into the street in Kendal, Cumbria after her 4 year old son Xiang

• She has a broken leg and is concussed • The boy is seriously injured with head, trunk and limb injuries and paramedics are at the scene• The father and 8-year old girl are bystanders. They speak almost no English• The nearest major trauma centres are in Liverpool and Manchester

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Appendix 3Membership of the Clinical Pathway Group

Name Job Title OrganisationDr Steve Ryan Medical Director Royal Liverpool Children’s NHS Trust (Chair)

Dr Peter Powell Consultant Paediatrician & Associate Medical Bolton Hospitals NHS TrustDirector Women’s Children's & OutpatientsDivision

Dr Kate Goldberg Consultant Paediatrician Blackpool, Fylde & Wyre Hospitals NHS Foundation Trust

Bridget Welch Safeguarding Children Lead Lancashire Care NHS Trust

Julie Flaherty Children’s Unscheduled Care Nurse Consultant Salford Royal NHS Foundation Trust

Mrs Moya Sutton Executive Director of Nursing Blackpool, Fylde & Wyre Hospitals NHS Foundation Trust

Dr Alyson Jones Clinical Medical Director; SAFE Centre, Lancashire Teaching Hospital

Dave Sweeney Commissioner Halton and St Helens PCT

Deb Lee Consultant Paediatrician North Cumbria Hospitals NHS Trust

Eustace de Sousa Associate Director; NHS North West, GONWChildren’s Services Advisor

Helen Lambert Clinical Safety Co-ordinator & Trust’s North West Ambulance Service NHS TrustChild Protection Officer

James Bruce Consultant Paediatric Surgeon Central Manchester and Manchester Children’s University Hospitals NHS Trust

John Doyle Public Health Specialist Liverpool PCT

Lorraine Butcher Assistant Director Halton Borough Council(Deputy Chair)

Michelle Morris Professional SALT Lead Salford PCT

Mike Burgess Assistant Director, Workforce NHS NW

Pat Marsh Registered Manager Together Trust

Elaine Heague Team Leader for School Health Sefton PCT

Gemma Trainor Nurse Consultant Greater Manchester West Mental Health NHS Foundation Trust

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Individuals and organisations that commented on the draft report included:

Name Job Title OrganisationCynthia Fletcher Regional Change Agent NW CSIP

Sue Kirk Manchester University

Moira Swann Director of Children’s Services Cumbria County Council, on behalf of NW (chair) Association of Directors of Children’s Services

Dominic Harrison Deputy Director Regional Public Health Team

Brian Boyle Children’s Services Advisor Government Office for the NW

Tim McDougall Nurse Consultant Pine Lodge Young People’s Centre

Andrew Rowland SpR Royal Liverpool Children’s NHS Trust and representative of BMA

Pat Crawford Finance consultant Royal Liverpool Children’s NHS Trust

Christina Kennedy Children’s Centre Manager Knowsley

Barbara Nicholls

Maureen Banner Ward Councillor Rixton & Woolston

Dr Dympna Edwards Deputy Director of Public Health Halton & St Helens Primary Care Trust

Helen Fessey Administrative Worker Liverpool Mental Health Consortium

Mark Platt Consultant Paediatric Psychiatrist Royal Liverpool Children’s NHS Trust

Dr David Isherwood Consultant Clinical Biochemist Royal Liverpool Children’s NHS Trust

Sian Snelling Consultant Community Paediatrician Royal Liverpool Children’s NHS Trust

Martin Farrier Consultant Paediatrician and Clinical Director WiganChild Health

Philippa Hunter-Jones Lecturer University of Liverpool Management School

Janet Cobb Jan-net Ltd

Director of Public Health Halton BC

Michelle Morris Consultant Speech and Language Therapist On behalf of regional AHP network

Jackie O'Carroll Reflect and Change

Jill Beaumont Service Director Supporting & Oldham Borough CouncilExtending Learning

Jane Marshall Consultant Clinical Psychologist Service Lead Working Together (Primary Care CAMHS)

John Hussey GP Liverpool

Sue Kardahji Infant Feeding Coordinator GONW

Dr Jim Gardner GP North Lancashire PCT

Professor Soo Downe UCLAN

Tricia Hamilton Regional Director of Nursing NHS Direct, North West Region

Susan Bothwell Patient Safety Manager NPSA

Jonathan Smith Chief Executive Cheshire and Merseyside Child Health Development Programme

Appendix 4

Main Themes and PrioritiesBecause the NHS continues to focus on sickness rather than preserving good health, much needs to bedone to change its culture and its mindset if the North West is to achieve the really big improvements inhealth we need.

The staying healthy group recommends a 2% per annum shift in NHS resources away from “fire-fighting”towards preventive measures, with an additional shift of 0.5 % for spearhead PCTs, to improve people’shealth.

Health inequalities is one of the most serious challenges facing the region and

as such is identified as a key area for action

❛❜


Staying HealthyClinical Pathway Group

Evidence based health improvement and preventive servicesshould include, as well as screening, effective multi-agencyinterventions to improve health and health determinantssuch as:

•Falls prevention

•Reducing seasonal deaths

•Healthy schools programmes

•Tobacco control to reduce exposure of children in the home to cigarette smoke, action on child poverty

•Reviewing licensing of alcohol premises

•Banning vending machines with junk food from colleges and workplaces

Health inequalities is one of the most serious challengesfacing the region and is a key area for action by the NorthWest Regional Public Health Group, NHS North West, andGovernment Office North West.

The region suffers widespread inequalities and needs bothshort and long-term strategies for health improvement:short-term solutions for health improvement are primarilywithin the remit of the NHS and NHS North West isresponding to this need and leading the work; long-termsolutions for health improvement require broader partnershipengagement.

People in the North West have some of the poorest health inthe country. More men and women die from cancer andcoronary heart disease than anywhere else in England; wehave the highest rates of alcohol-related hospitaladmissions; and the highest rate of admissions forschizophrenia and depression. Improvements in life-expectancy in the past five years have not been big enoughto close the gap between ourselves and other parts of thecountry. There is also a danger that obesity and excessivedrinking could undo the progress that has been made.

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The State of Health in the North West

People in the North West face some considerablechallenges to their health and wellbeing:

• The North West is the seventh worst region for low income

• 16% of people on benefits

• Over a quarter of children live in poverty

• 23% of adults are binge drinkers

• More than six out of 10 adults are overweight or obese

• Only 11% of adults are physically active

• We have the highest level of drug misuse in England

• We have the highest level of long term mental health problems in England

Manchester and Blackpool have the lowest average malelife expectancy in England - at 73 years, a substantial 10years less than the English local authority with the highestmale life expectancy (Kensington and Chelsea at 83 years).

Life expectancy for women shows a similar pattern.Liverpool has the lowest female life expectancy - at 78years, nine years fewer than the England best of 87 years.

In the North West there are 3,500 excess annual deaths inunder 75 year olds, from causes that are treatable and/orpreventable. Almost 2,000 are due to cardiovascular (CVD)diseases and cancer; over 500 are due to respiratoryconditions; almost 500 are due to digestive diseasesincluding cirrhosis; and almost 250 as a result of accidentsand external causes.

Other areas of concern include:

• Sexual health: we perform poorly on the target to give access to services within 48 hours, particularly for the under 25s and 40-50 age groups

• Obesity: childhood obesity mirrors national trends and adult obesity is likely to have a high impact on diabetes and renal services

Life Expectancy Gap: Local Authorities in the North West, and EnglandTrend 1995-97 to 2004-06, comparing the North West average with the spearhead group

three-year pooled figures

Per

cent

age

of n

atio

nal l

ife e

xpec

tanc

y at

birt

h

• Alcohol: trends in North West are rising at a faster rate than the national trend with concomitant increasein liver disease and intestinal diseases

• Lung cancer: this is the most common cause of cancer death across the North West, even though health economies are making significant progress in smoking cessation and tobacco control. Lung cancer is almost wholly preventable

• CVD: this is the most common cause of death. There is variable performance in managing high risk patients. Maximum effort with this group would achieve the 2010 life expectancy target

• Under-18s conceptions: linked to sexual health and alcohol agendas

• Flu Pandemic: this is overdue and could occur within next two years. At least 50,000 deaths are expected across UK and it will hit in two waves over athree to four month period

36

Health inequalitiesAchieving a reduction of health inequalities in the NorthWest depends on delivery of short (by 2010) and medium tolong term (beyond 2010) strategies for health improvement.

In turn these should be underpinned by effectiveinterventions, health policies and healthcare services whichensure that the people of the North West can stay healthy,and that are supported by robust intelligence andperformance improvement systems.

The short term focus or the ‘now solutions’ for achieving ameasurable improvement in life expectancy by 2010, will require systematic action with interventions that are knownto be effective. This means action to prevent prematuredeath for people who already have cardiovascular diseaseand cancer or are at high risk of these diseases.

For the medium to long term, action on the wider factorswhich affect health are needed. This includes housing,employment, education, and transport and requires anintegrated strategy from government departments, local authorities, the NHS and other key regional partners such asthe Regional Development Agency. This will mean tacklinglifestyle factors linked to obesity in adults and children, typeII diabetes and alcohol consumption.

The group has reviewed the current public health issues andchallenges facing the North West, and the role of the NHS in its own work and in partnership with others in addressingthese issues.

Establishing where we want to be:There are two major cross-cutting themes in the stayinghealthy group:

• The NHS as a corporate citizen and a corporate employer

• Creating consumer demand for health

The group’s desired position includes the following:

• Use those professionals who deal with “the well”

• Disseminate learning into our individual organisations

• Maintenance of whole health includes mental health and wellbeing

Regional Indicators of Performance: AlcoholAlcohol-related death rates, with 95% confidence limits1, 2001-2003 (pooled)

Rate per 1,000 population

ENGLAND NorthEast

NorthWest

Yorkshire& the

Humber

EastMidlands

East ofEngland

WestMidlands

London SouthEast

SouthWest

• Use of tools and techniques to help us achieve our desired outcomes

• Alcohol is the health time bomb

• Positively influence pregnancy; it sets you up for life

• Think about the contribution of different determinants of health, not just lifestyles

• Building health resilience; make real and sustained changes to a community’s ability to stay healthy through the use of social marketing

• Influence the future direction of NHS - shift resources to prevention

• Create public anger at health inequalities and create adesire for change

• Create coalitions for staying healthy

• Break the cycle of preventable repeated ill-health

• Bridge the culture gap between partners in staying healthy

• Keep solutions simple and deliverable

• Learn from the commercial sector about getting the message across

Emerging themes

• Managing health and health seeking behaviour

• Reducing health inequalities

• Ensuring the wider health agenda is covered

• Staying healthy before you hit the clinical pathway

• Health literacy and resilience

• Communications and the role of the media in helping to “make health infectious”

• The staying healthy group needs to influence and challenge other clinical pathways groups’ outputs

The NHS should be seen as only a part, whilst a significantone of the solution to improving health. The health serviceneeds to engage with other players such as localauthorities, third sector and the private sector, which can allhave an impact on improving health. It is therefore crucial toengage these partners as well as the people of the North

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38

Drivers and BarriersThe barriers to tackling health inequalities can be dealt with if there is political will and if there is a coalition to create“consumer demand” for health. Public health intelligence can help deal with public anxiety about the “nanny state”, whileawareness of the economic impact of health risks can be a driver for change. The table below illustrates the main barriers toimproving health and the corresponding drivers:

West at an early stage. The table below gives details ofsome of our stakeholders:

Examples of partners in staying healthy

Service usersOther clinical pathways

Homeless/asylum seekersSocial housing associations

AmbulanceDisabled people

BusinessPortman Group

Social clubs/groupsParents

Social care professionalsPublic

Fire ServiceTeachers

Schools/colleges/universitiesPrivate sector - industry

Police Public health development service

ChildrenSomeone with an interest in the area/field

Amateur/professional sports teamsVoluntary sectorPubs and clubs

Community pharmacy

BARRIERS DRIVERS

Performance management Leadership Practice based Policy:commissioning - Commissioning

- Joint strategic needs assessment- Local area agreements

Resources - funding stream Media NHS communications

Resistance to change Political will Professional attitudes

Public anxiety - fear of “nanny state” Public health intelligence Realisation of central and local government’s role in protecting and promoting the public‘s health

Adverse reactions to public Quality of partnershiphealth message Community demand

Cost to treasury The way things are

Messages too general - Economic impact of health risksneed to personalize

Inconsistent media reporting of Leadership and developmentscientific research - magnify the trivia

Need for long-term thinking Shift from second to first careworld class commissioning

Difficult to lead by example - Workforce planningworkforce unhealthy New ways of working

Key challenges:

The group identified some of the main challenges:

• Changing the culture and mindsets of staff from the inside out by training and development

• Changing the NHS from a sickness to a health and wellbeing service

• All staff to use consistent messages at every opportunity - training and values

• Systematic delivery of health improvement and preventive services on an industrial scale

• Job descriptions including health improvement activity

• Public cynicism

• A proactive marketing strategy for health and wellbeing through collaboration across public, private and third sector agencies, which includes better use of real life stories

The group commissioned a piece of work to review publicattitudes towards health and healthcare in the North Westfrom 2005 to the present day, which has influenced thethinking behind this report.

In all, 20 separate studies were analysed for commonthemes and key messages.

The studies show a gap in understanding why people whoknow they should eat healthily and take part in exercise donot do so; a lack of understanding about what action thepopulation wants government, NHS, local authorities andpartner organisations to take, to support them in makinghealthier choices, without being considered a “nanny state”.Only 11% believe their lifestyle choices affect their ownhealth, whilst 42% felt major diseases had more effect.

This highlights a considerable knowledge gap in thepopulation’s understanding of how everyday choices impacton their own health and contribute substantially to ill health.As Wanless highlights, for the population to improve theirhealth they need to understand what “being healthy couldmean for them.”

It is clear that some different approaches are needed totackling the health problems that people in our region face.Since children are the future, we need to ensure they canmake informed choices about diet and physical activity andare encouraged to live healthy lives. However, anyapproaches should include parents too, since they haveidentified that they need support and informationthemselves, to achieve healthier lives for their children.People know that diet has a major influence on their health,but barriers such as cost and time reduce their ability tomake healthier choices. They would like to see moreconvenient services available that would support goodhealth, other than the traditional ones available from theirGP.

We need to consider the range of potential interventions thatmight lead to public health improvements and fullyunderstand the feasibility, the cost of change to variousstakeholders, the likely impact if change is achieved, andhow far away from our targets we are on a particular issue.

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Our Approach:The Lifecycle Framework

The group has developed a staying healthy lifecycleframework (attached Appendix 1) based on St Leger andPickens’s Framework for Health Needs Assessment, toidentify where staying healthy intervention programmes canhave a key influence at different stages in life. It also links tothe work of other clinical pathway groups. There are somecommon themes such as childhood immunisation and othervaccination programmes, improved medicines management,chronic disease management, weight management, crimeprevention programmes and support for victims of crimeand anti-bullying, homelessness.

This approach is underpinned by the themes of physicaland mental wellbeing, sustainability, respect and dignity.

The NHS needs to develop joint initiatives and engage withother players to improve public health, the regionaleconomy, social cohesion and the environment. There willneed to be strong partnerships with the local councils, thevoluntary sector, the private sector and other regionalagencies, such as the ambulance and fire services toachieve these goals. The partnership with citizens will becrucial, they will play an important role in shaping andmanaging the direction of travel.

Strategic links are needed with regional and nationalpriorities such as:

• Commissioning for Health and Wellbeing

• Health Challenge England

• Our Life

• Our Health Our Care Our Say

• Transforming Social Care

• The North West Framework to Achieve Healthy Weightfor Children and Families

• The North West Food and Health Action Plan

• The sustainable development and corporate and social responsibility agendas

• The emerging health programmes of city region developments

• Local, multi and comprehensive area agreements

Our RecommendationsSet out below are key messages from the lifecycleframework for the NHS as a whole, and national andregional recommendations, which would support the culturechange needed for the NHS to become a staying healthyservice.

National recommendations from the North West

Reform the system

• Plurality of provision - development of new preventionservices and public health outcomes built into national contracts on the basis of world class commissioning

• Develop contestability in the delivery of health improvement services

• Review and reform the NHS tendering process to allow new market entrant, especially third sector and social entrepreneurs, to compete for contracts as service providers

• Develop all health, wellbeing and social care partners into “public health and health improving” organisations focussed on reducing health inequalities

• Acute, specialist and care trusts to join the health promoting hospitals network

Harnessing resources

• There should be a national review of the Quality andOutcomes Framework, which should incentivise the delivery of the health and wellbeing agenda. Over time, QOF should move to become an evidenced-based public health, focussed system. At the momentthe QOF indicator for regular review of high risk CVD patients is not consistent with NICE or NSF guidance

• Use programme budgeting, to determine, promote and monitor a substantial and sustained shift in mainstream NHS resources from treatment to prevention to deliver improved health outcomes (suggested 2% per annum with an additional 0.5% forspearheads) and reduce health inequalities

• Develop national tariffs for health improvement activityas part of payment by results as an incentive. International Classification of Disease 10 codes exist (work undertaken by European Union, Health Promoting Hospitals network and World Health Organisation Europe) to enable a tariff to be set for health improvement activity such as brief intervention for alcohol or smoking cessation

• Commission health improvement activity as part of service level agreements with all providers and establish performance standards within a quality framework

• Commissioning for health and wellbeing framework should be incorporated formally into the National Operating Framework and local area agreement guidance with focus on improving health equity

• Review the use of taxation as a tool for influencing personal staying healthy behaviour

Develop the workforce

• Specific health improvement and public health training, skills and practice built into the Knowledge Skills Framework and into all NHS job descriptions nationally

• The electronic staff record, needs to be adapted to reflect public health and health improvement skills andcompetence

• Develop and implement national public health training programmes, qualifications and accreditation for frontline staff

• Develop and implement a national public health leadership programme for leaders in different sectors, for example, scrutiny committee councillors, chief executives, executive and non-executive directors and chief officers

• Health improvement and public health training skills and practice should be built into the performance improvement and staff development frameworks of local authority, other public sector and third sector staff

• Workforce leads and regional directors of public health in Government Office and Strategic Health Authority roles in each region, to agree training programmes to deliver basic qualification through service level agreement with appropriate providers and partners

• Public Health Teaching Networks to introduce public health and health inequalities themes into other continuing professional development programmes, by scoping the formal CPD programmes operating in each region in partnership with post-graduate deans and other key agencies

• Public health networks to ensure NHS organisations and other partners in each region contribute to the workforce commissioning process

• Review ooccupational health services and develop consistent national standards which support health seeking behaviour and return to work

• The NHS should lead by example by having a healthy workforce and, therefore should ensure that staff have preferential access to an effective, world class occupational health service which supports health promoting lifestyles and return to work

Improve performance

• National performance improvement frameworks and targets should measure achievement of health improvement outcomes and reduction in health inequalities

• Regulators such as Healthcare Commission, Monitor, Care Standards Agency and the Audit Commission to ensure that frameworks such as the annual healthcheck and the comprehensive area assessments assess health and social care organisations’ joint capacity and capability to deliver health improvement outcomes and reduce health inequalities

Creating the environment

• The recommendations above need to take place within the context of a sustainable environment. The NHS needs to be committed to developing joint initiatives to improve public health, the national and regional economy, social cohesion and the environment and engage with other players

• We should ensure that NHS premises become health promoting environments using tools such as health imapct assessment, sustainability appraisals and benefits realisation. Work is underway in the North

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West to align health impact assessment and benefit realisation methods, working with community health partnerships

• The NHS and local authorities should ensure that all significant new infrastructure developments should beinformed by and reflect the need to improve health and well-being and reduce health inequalities using health impact assessment as part of the formal assessment and planning process

Regional recommendations for the North West

The NHS and other key partner agencies in the North Westshould be an early adopter of the lifecycle framework:

• Ensure that staying healthy recommendations are incorporated into all other clinical pathways programmes using the lifecycle framework to inform this

• Government Office North West and NHS North Westshould ensure that commissioning intentions in standard operating frameworks, staying healthy agenda and lifecycle framework

• NHS North West and CSIP should ensure that all relevant partners are engaged in workforce development to deliver health improvement and reduce health inequalities

• NHS North West and other key partners should ensure that all social marketing programmes in the North West are aligned to and consistent with the staying healthy recommendations

• Ensure that the Our Life programme delivery is alignedto and consistent with the principles set out in creating consumer demand for health and that this programme is formally evaluated

• North West Development Agency to review and support the delivery of increased workforce capacity and capability, to deliver staying healthy agenda through its joint work with the NHS on sustainable public sector procurement and the good corporate citizen group

• The NHS has a corporate and social responsibility to improve recruitment opportunities for local disadvantaged and long-term unemployed people. Worklessness is one of the key contributors to poor physical and mental health. Partners need to jointly plan education and training for staff; to develop recruitment strategies to maximise joint working; and to focus on developing the potential of the local population

• We recommend that the staying healthy lifecycle framework is supported by a robust, user-friendly intelligence system, with data collection linked to the Advancing Quality programme for:

• Health improvement activity and outcomes

• Providing patient-centred information to facilitate their treatment and ongoing self-care

• Supporting health and social care workers in giving appropriate advice and care

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Appendix 1

A Staying Healthy Lifecycle Framework

NHS messages:NHS as a corporate citizen and a corporate employer should:• Improving recruitment opportunities for local, disadvantaged and long-term unemployed people, as well as other

marginalised groups. Collect sophisticated data on retention and recruitment and set and report on agreed targets

• Invest in the training and development of the future professional workforce, and in health improvement aspects of employment. The NHS will continuously build on the Improving Working Lives standard

• Maximise the impact of recruitment and retention on the health of the local community. The NHS will work in partnership with other regional and local agencies, to plan skills development and recruitment strategies to maximise joint working and develop the potential of the local population

• Monitor the work environment and will demonstrate continuous health improvement of staff. Staff will be involved in developing a healthy workplace and initiatives to support healthy lifestyles

• Make healthy sustainable food options available to staff and visitors for example access to fresh fruit and vegetables, organic food, reduced salt and fat; and support healthy lifestyles such as exercise, support for stopping smoking, drinking water

• Help staff access childcare and offer the opportunity to purchase childcare vouchers. Staff, who are carers offered flexible working to suit their needs. Progress will be monitored through staff satisfaction surveys on whether staff who areparents or carers are happy with the level of support offered

• Develop joint initiatives and strategies to improve public health, the regional economy, social cohesion and the environment

• Contribute to the reduction of health inequalities working in partnership with others. The NHS is committed to achieve national targets to reduce health inequalities, and to improve health in the community

Creating consumer demand for health• Coalition building and the creation of public demand: stakeholder mapping should reveal the individuals and groups

who can challenge the status quo, or question the power strucutures that are barriers to change. The ability to identify, support, and harness coalitions too challenge strong vested interests will be essential if the enabling framework is to tackle some of the fundamental determinants of health

• Public mobilisation: to promote change we may need to increase public awareness of the extent to which external influences (e.g. availability of unhealthy products, media activity, advertising, etc) act against their health interests. This may lead to anger and dissatisfaction about manipulation by the industry, similar to that which is often seen when more traditional threats to public healt hare portrayed in the media

• Social marketing: these techniques are a powerful tool, encompassing issues such as communication, and market segmentation. Social marketing approaches need to “sell” the required behavioural change and also change the way in which the population accesses and uses health services. On its own, however, social marketing is likely to meet with limited success

• Responsibility for good health: the general public accepts responsibility for their own health but are aware of external constraints that prevent them leading healthier lives. Most people believe more exercise would improve their health and many would like to take part in exercise. However, there are barriers stopping people from doing this

• Public attitudes to alcohol: excessive drinking is highlighted as a problem in all lifestyle surveys and a behaviour change is required to address this problem. Individuals believe government has a large role to play in tackling this issue. Barriers to change:

• The public knows diet has a major influence on health and do want to eat more healthily. However, as with exercise, barriers such as cost and time are reducing their ability to make healthier choices

• Role of the NHS: there is a lack of research on how individuals feel the NHS can best help them in making healthier choices

• Improving community health: a focus on children and younger people living healthier lives (diet and physical activity), can provide an opportunity to improve community health in the future

• Changing expectations: individuals from social class DE (i.e. those most in need of preventive interventions) would prefer the NHS to concentrate on helping sick people and those at risk rather than focusing on preventing disease for thewhole population and supporting better health.

• More information: most people are satisfied with their GP services. However they would like more information about what other services are available

• More local services: individuals support the idea of community health centres that include services such as speech and language therapy, physiotherapy, wound dressing, GP consultations, blood tests etc.

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§AGE STAYING HEALTHY RISK FACTORS LINK TO GOVERNMENT INTERVENTION OTHER CLINICAL AND POLICY

PATHWAY GROUPS CHANGE

Pregnancy/ General: Preconception advice Obesity, Birth National Service pre-birth inc nutrition, antenatal advice, diabetes, alcohol Long Term Conditions Framework for long

Medicines management: for and or drug misuse, term conditions tomany individuals medicine congenital reflect needs oftaking Maintains/improves their abnormalities, pregnant womenhealth and mental well-being, mental illness,prevention and management of long term conditionsgestational problems. Antenatal including epilepsy,screening programmes, hearing, cardio-vascularheel-prick test, dental hygiene, disease, smoking cessation in pregnant respiratory diseasewomen. Promotion ofbreastfeeding, peri-natal mentalhealth promotionSubstance misuse: Preventalcohol harm in pregnancy -abstinence and brief focusedinterventions,

0-5yrs General: Neonatal screening, Obesity, Children’s, End of Life, Extension of childhood immunization learning and Mental Health Surestart,programmes, play and physical physical disabilities, Tobacco control toactivity, accident prevention, congenital look at home Reducing exposure to tobacco, abnormalities, exposure, oral health, Medicines mental illness, Promotion andmanagement: for many individuals LTC including epilepsy, support formedicine taking maintains/ CVD, breastfeeding,improves their health and mental respiratory disease, action onwell-being, child poverty child povertyObesity: Weight management,healthy eating programmes,initiation and maintenance of breastfeedingMental Health/child protection:Prevention of domestic violence/child abuse, parenting skills,behavioral interventions,anti-bullying programmesCancer prevention: sun safety

5-11yrs General: Physical activity, walking Types 1 and 2 Children’s, End of Life, Extension of ’freecycling to school, accident diabetes, Mental Health fruit in schools prevention, Reducing exposure to obesity, scheme,tobacco, oral health programmes, congenital BanningMedicines Management: for many abnormalities, vending machinesindividuals medicine taking mental illness, with junk food inmaintains/improves their health LTCincluding epilepsy, schools. Extensionand mental well-being, CVD, of Healthy SchoolsObesity: Weight management, respiratory disease, programmeshealthy eating programmes child poverty Review licensing ofChronic disease management of alcohol premises,long-term conditions and supporte.g. diabetes/asthma, flu & measures to reduce pneumococcal vaccination under-age drinkingMental Health/child protection:Prevention of domestic violence,child abuse problems. Parentingskills, behavioural programmes,crime prevention programmes andsupport for victims of crime,anti-bullying programmesSubstance Misuse: Prevention ofunderage drinking programmes,regulation of premises supplyingalcohol, Brief interventions,Cancer prevention: Sun safety

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AGE STAYING HEALTHY RISK FACTORS LINK TO GOVERNMENT INTERVENTION OTHER CLINICAL AND POLICY


11-16yrs General: Physical activity, walking/ Obesity, Children’s, End of Life, Extension of ‘free cycling to school, accident diabetes, Mental Health, fruit in schools prevention. Reducing exposure to alcohol/drug misuse, Birth scheme’tobacco, smoking cessation, congenital BanningTetanus and polio boosters, Oral abnormalities, vending machineshealth programmes, Medicines mental illness, with junk food inmanagement: for many individuals LTC including epilepsy, schools. Extensionmedicine taking maintains CVD, of Healthy Schoolsimproves their health and mental respiratory diseases, programme.well-being, Obesity: Weight Smoking, Review licensing ofmanagement, healthy eating child poverty, alcohol premises,programmes Chronic disease learning and physical and supportof long-term conditions: Flu & disabilities, measures to reducepneumococcal vaccination. low educational under-age drinking.Mental health/child protection: attainment, Promote and extendPrevention of domestic violence/ teenage pregnancy/ healthy schoolschild abuse, anti-bullying parenthood transport programmes, Mental health programmesawareness, Parental education andsupport, crime preventionprogrammes and support for victimsof crime Substance misuse:Prevention of underage drinkingprogrammes, regulation of premisessupplying alcohol, Brief interventions,Sexual health: Teenage pregnancyprogrammes improving access toemergency contraception,termination, young people’s sexualhealth services for sexuallytransmitted infections, Cancerprevention: Human Papilloma Virus vaccination. Sun safety

16-25yrs General: Physical activity, walking/ Obesity, Children’s, Planned Care, Banning vendingcycling to school/college/work diabetes, Long Term Conditions, machines with junkReducing exposure to tobacco, alcohol/drug misuse, Unplanned Care, food in schools, smoking cessation. Tetanus and mental illness, End of Life, colleges and polio boosters, Accident prevention LTC including epilepsy, Mental Health, workplace Extension schemes, Oral health promotion, CVD, Birth of Healthy SchoolsMedicines management: for many respiratory disease, programmes,individuals medicine taking low educational Promotion of andmaintains/improves their health attainment, incentivise healthyand mental well-being, Obesity: physical and learning workplace schemesWeight management, healthy eating disabilities, Review licensing of programmes Chronic disease worklessness, alcohol premises,management: Flu & pneumococcal teenage pregnancy/ and support vaccination, self-management parenthood measures to reduceprogrammes, pulmonary rehab harmful and binge Substance misuse: Brief drinkinginterventions for alcohol, drug rehab,Alcohol/drug detox programmes,Sexual Health: Reducing unwantedpregnancy, improving access toemergency contraception,termination, sexual health servicesfor STIs, Access to family planningservices, preconception advice andantenatal screening, Managementof alcohol misuse in pregnancy,prenatal diagnosis of fetal alcoholsyndrome, Parenting skills,Promotion of breastfeeding, Smoking cessation in pregnancyCancer prevention: Testicularcancer awareness, Sun safety

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25-45yrs General: Physical activity, walking/ Familial Planned Care, Banning vendingcycling to work/activities of daily hyperlipidaemia, Long Term Conditions, machines with junkliving, Reducing exposure to smoking, Unplanned Care, food in collegestobacco, smoking cessation, obesity, End of Life, and workplace,Accident prevention schemes, diabetes, Mental Health, Promotion of andWell-man/women programmes, alcohol/drug misuse, Birth incentivise healthyOral health promotion, Glaucoma congenital workplace schemesscreening, Medicines management: abnormalities, Review licensing offor many individuals medicine mental illness, alcohol premisestaking maintains/improves their LTC including epilepsy, and other measureshealth and mental well-being, CVD, to promoteObesity: Weight management resp disease, responsible supplyincluding bariatric surgery, learning & physical and availability andhealthy eating programmes disabilities, support measuresChronic disease low educational to reduce harmfuldetection & management: attainment, and binge drinkingDiabetes, hypertension screening, worklessness,blood pressure and cholesterol low income,management, Cardiac rehab, homelessnessStroke prevention, early diagnosis and rehab, Flu & pneumococcal vaccination, Self-management programmes, Pulmonary rehabSubstance Misuse:Brief interventions for alcohol andalcohol/drug rehab, alcohol/drugdetox programmes, Access tospecialist services - transplantation,Support services for families livingwith alcohol/drug misuse,Management of alcohol misuse inpregnancy, Prenatal diagnosis offetal alcohol syndrome,Mental Health: Access to domesticviolence programmes, detection &treatment of post-natal depression,Mental well-being programmes,prevention of suicide/self-harmSexual Health: Cervical screening,Reducing unwanted pregnancy,access to emergency contraception,termination, Sexual health servicesfor STIs, Access to family planningservices, preconception advice andantenatal screening,Cancer prevention: Cervicalscreening, Testicular cancerawareness, Sun safety

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45-64yrs General: Physical activity, walking/ Familial Planned Care,cycling to work/activities of daily hyperlipidaemia, Long Term Conditions, living, Reducing exposure to smoking, Unplanned Care,tobacco, smoking cessation, Fuel obesity, End of Life,poverty and income maximization diabetes, Mental Healthschemes, Accident prevention alcohol/drug misuse,schemes, Well-man/woman congenital programmes, Oral health promotion, abnormalities,Glaucoma screening, Age related mental illness,macular degeneration, Medicines long term conditionsmanagement: for many individuals including epilepsy, medicine taking maintains/ CVD, improves their health and mental respiratory disease,well-being, learning and physicalObesity: Weight management inc. disabilities,bariatric surgery low educationalChronic disease detection and attainment,management: Diabetes worklessness,(incl diabetic retinopathy screening) low income,hypertension screening, homelessness,blood pressure and osteoporosis,cholesterol management, menopauseHeart failure detection andmanagement, cardiac rehab,Stroke prevention,early diagnosis and rehab,Self-management programmesPulmonary rehab, Flu & pneumococcal vaccinationSubstance misuse: Briefinterventions for alcohol andalcohol/drug rehab, alcohol/drugdetox programmes, access tospecialist services - transplantation,support services for families livingwith alcohol/drug misuse, Mental health: Access to domesticviolence programmes, mentalwell-being programmes, preventionof suicide/self-harmSexual Health: Access to sexualhealth services for STIs, CervicalscreeningCancer prevention: Breast cancerscreening, Sun safety

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64-75yrs General: Activity ageing Familial Planned Care,programmes, Flu & pneumococcal hyperlipidaemia, Long Term Conditions, vaccination, Physical activity, smoking, Unplanned Care,walking/cycling to activities of daily obesity, End of Life,living Reducing exposure to diabetes, Mental Healthtobacco, smoking cessation, alcohol/drug misuse, Accident/falls prevention, Fuel congenital poverty and income maximization abnormalities,schemes, Oral health promotion, mental illness,glaucoma screening, Age related LTC including epilepsy,macular degeneration, Medicines CVD,management: for many individuals respiratory disease,medicine taking maintains/improves learning & their health and mental well-being, physical disabilities,Obesity: Weight management, low educational healthy eating programmes attainment,Chronic disease detection & low income,management: Diabetes (inc diabetic homelessness, retinopathy screening) hypertension dementia/Alzheimers, screening, blood pressure and cholesterol management,Heart failure detectionand management, cardiac rehab,Stroke prevention, early diagnosisand rehab, Self-managementprogrammes, Pulmonary rehab.Substance Misuse: Briefinterventions for alcohol and alcohol/drug rehab, alcohol/drug detoxprogrammes, Access to specialistliver services - transplantation,Support services for families livingwith alcohol/drug misuse,Mental health: Access to domesticviolence programmes, mentalwell-being programmes, preventionof suicide/self-harmCancer prevention: Bowel andbreast cancer screening, Sun safetySexual Health: Access to sexualhealth services for sexuallytransmitted infections

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75-85yrs General: Activity ageing programmes, Smoking, Planned Care,physical activity, walking/cycling to osteoporosis, Long Term Conditions,activities of daily living Reducing obesity, Unplanned Care,exposure to tobacco, Accident/falls diabetes, End of Life,prevention, Fuel poverty and income alcohol/drug misuse, Mental Healthmaximization schemes, Flu & congenitalpneumococcal vaccination, Oral abnormalities,health promotion, Glaucoma mental illness,screening, Age related macular LTC including epilepsy,degeneration, Medicines CVD,management: for many individuals respiratory disease, medicine taking maintains/improves learning & physicaltheir health and mental well-being, disabilities,Obesity: Weight management, low educational healthy eating programmes attainment,Chronic disease detection & low income,management: Diabetes, homelessnesshypertension screening, dementia/Alzheimersblood pressure andcholesterol management, Coronary heart disease,Chronic disease management, Heartfailure detection and management,cardiac rehab, Stroke prevention,early diagnosis and rehab,Self-management programmes,Pulmonary rehab Substance misuse: Briefinterventions for alcohol andalcohol/drug rehab, alcohol/drugdetox programmes, Access tospecialist services, Support servicesfor families living with alcohol misuse,Mental health: Access to domesticviolence programmes, Prevention ofelder abuse, Management ofdementia/depression, Carer support,Mental well-being programmes,Prevention of suicide/self-harmCancer prevention: Bowel cancerscreening, Sun safety

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85yrs + General: Activity programmes, Smoking Planned Care,physical activity, obesity, Long Term Conditions,walking/cycling to activities of daily diabetes, Unplanned Care,living. Reducing exposure to alcohol/drug misuse, End of Life,tobacco, Accident/falls congenital Mental Healthprevention schemes, Fuel poverty abnormalities,and income maximization schemes, mental illness,Flu & pneumococcal vaccination, LTC including epilepsy,Oral health promotion, Glaucoma CVD,screening, Age related macular respiratory disease,degeneration. Obesity: Weight learning & physicalmanagement, healthy eating disabilities,programmes Chronic disease low educational detection & management: Diabetes, attainment,hypertension screening, low income,blood pressure and homelessness,cholesterol management, Heart mobility problems,failure detection and management, osteoporosis,Cardiac rehab, stroke prevention, dementia/Alzheimers,early diagnosis and rehab, increase risk of jointSelf-management programmes, problems andPulmonary rehab. osteoarthritis.Substance Misuse: Briefinterventions for alcohol andalcohol/drug rehab, alcohol/drugdetox programmes,Access to specialist services,Support services for families livingwith alcohol misuse,Mental health: Access to domesticviolence programmes, Preventionof elder abuse, Management ofdementia, Carer support, Mentalwell-being programmes, preventionof suicide/self-harmCancer Prevention: Bowel cancer,sun safety

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Appendix 2Cross-over issues for other clinical pathway groups

Guide: Reading across, the pathway on the left would be the ‘lead’ pathway in relation to the crossover issue.So for example, Birth would lead on breastfeeding, but there is a clear crossover with children.Similarly, children’s pathway would lead on parenting, but there is a clear crossover with birth.

RespectHealth Literacy

Health SkillsNutritionObesity

Birth Children MENTAL HEALTH

STAYING • Pre-conception health • Parental obesity • Health promotion, HEALTHY • Healthy eating during • Smoking cessation • Obesity

pregnancy • Sexual health services for • Smoking• Parental obesity young people • Sexual health • Smoking cessation • Healthy parents • Mental wellbeing appr, to target group• Sexual health services for • Parenting skills • Homelessness

young people • Immunization • Worklessness• Uptake of screening • Looked after children • Wealth/deprivation• Uptake of imm and vac • Alcohol and drugs • Screening• Breastfeeding • Safeguarding • Cultural issues inc. diversity• Alcohol/drug misuse • Healthy eating • Diabetes drug effects induced• Teenage pregnancy • Physical activity • Access to psychological therapies• Access to maternity services • Childhood obesity • Substance misuse• Perinatal mental health.

RespectHealth Literacy

Health SkillsNutritionObesity

• Health-promoting organisations

• Pre-op weight management• Pre-op smoking cessation• Pre-op brief interventions for

alcohol• Info flow between health and

social care• IT/Intelligence• Coordination

• Falls prevention• Reducing avoidable

admissions• Uptake of screening• Uptake of imm and vac• Effective chronic disease

management of high risk patients

• Targeted smoking cessation• Weight management• Appropriate prescribing and

physical activity programmes

• Effective interventions for mental health andwell-being of individual andcarers

• Measures to improve dignity

• HIV/Aids• Mental wellbeing• Condensing morbidity• Having ‘a good death’ • Access to treatment/

technology• Choice - where to die• Dignity• Respect•Ageism• Respect for individual• Access to hospice • Care at home

Long-term Planned Urgent/Unplanned End of lifeconditions

•Uptake of screening•Uptake of imm and vac•Effective chronic disease

management of high risk patients

•Targeted smoking cessation•Weight management •Appropriate prescribing

and physical activity programmes

•High-risk identification•Early detection•Alcohol/drug misuse

(prescribed)•Expert patient programme•Care planning•Mental health•Morbidity

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Appendix 3Membership of the Staying Health Clinical Pathway Group

Chair: Dr Raj Patel, PEC Chair and GP, Tameside and Glossop PCTDeputy Chair: Dr Frank Atherton, Director of Public Health, North Lanchashire PCTFacilitator: Dr Kate Ardern, Associate Director of Public Health, NHS North West

Name Position Organisation

Kate Ardern Associate Director of Public Health NHS North WestFrank Atherton Director of Public Health North Lancs PCTKailash Chand GP BMASteve Evans First on Scene Trainer NWASNiall Furlong Cons. Physician & Endocrinologist St Helens and Knowsley Hospitals NHS TrustRay Green Dietician Manchester PCTPaula Grey Director of Public Health Liverpool PCTLeigh Griffin Chief Executive Sefton PCTNeil Harris Consultant Nurse for Mental Health Manchester Mental Health and Social Care NHS TrustAndrea Loudon Pharmacy Adviser Cumbria PCTRaj Patel PEC Chair Tameside & Glossop PCTDr I W Turnbull Clinical Radiology British Medical AssociationVal Wass GP & Professor of Learning University of ManchesterAdrian Watson CEHO & head of trading standards Rochdale MBCCarole Wood Public Health Specialist Cumbria PCTLydia Moore Head of Midwifery Liverpool Women’s NHS Foundation TrustCharlie Barker Director of social services Sefton BC

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EXECUTIVE SUMMARY

The North West urgent care clinical pathway group focused on three areas of urgent care

• Out of hours access (OOH)

• Pre hospital assessment; and

• Intermediate care and facilitated discharge

The group looked at what is happening now to patients and developed a consensus on what good care

should look like. The final part of the review focused on the barriers preventing change and made

recommendations for the future.

The group believes it is vital for urgent care services to beintegrated and that the barriers between primary, secondaryand social care should be removed. Financial and othersystem barriers need to be tackled, so that patients andhealth care staff have a clearer idea of how services work.

The group recommends that trauma should be a regionallymanaged network, but basic stroke care should bemanaged locally with commissioners managing variation incare.

Intermediate care should be commissioned based on a localhealth economy analysis of what patients require.

Most importantly, the group believes that the key way toensure that people get the right treatment in the appropriatesetting, is the provision of integrated urgent care services,available if required 24 hours a day, seven days a week.

It is vital for urgent care services to beintegrated and that the barriers between primary,

secondary and social care should be removed

❛❜


Urgent CareClinical Pathway Group

Recommendations

The five main recommendations from the group aresummarised below.

Recommendation One: PCTs should work withproviders to commission streamlined access to out ofhours urgent care that will take the patient to the servicethey need as quickly as possible. This could include asingle number for telephone access when this becomesavailable nationally.

Actions• Commissioners should commission a multi-professional

urgent care network responsible for monitoring the implementation of change, auditing the effectiveness of change through clinical outcomes, and horizon scanning

for innovation

• Networks should commission a piece of work together with urgent care providers to further refine the five levelsof care as recommended by the College of Emergency Medicine, in order to standardise OOH delivery services and access to diagnostic services

• Spread lessons from innovative areas of good practice across the North West and ensure there is some standardisation across the region

• Shared IT between all partners must be implemented asa priority

• All units receiving children for urgent care should ensurethat staff are present 24/7 who have the appropriate competencies to manage them, as specified in the Tanner report

• Where payment by results (PBR) is a barrier to service development, mutual service partnerships should be developed and consideration given to pump-priming monies, to allow service developments to proceed

Recommendation Two: Urgent and OOH elements ofprimary, secondary and intermediate care should becommissioned in conjunction with social care, so that afully integrated and aligned service is delivered topatients.

Actions• Social and healthcare should be funded as a single

service line

• Development of an inter-professional workforce with a culture of joint teaching and learning

• Ensure that a robust clinical governance framework is commissioned that crosses traditional boundaries wherenecessary, to measure patient outcomes in an holistic and meaningful way

• Mental health, alcohol and drug services and social careneed to be fully integrated into urgent care response services. The staying healthy pathway group has accepted the challenge of improving prevention for drugs and alcohol abuse. However, urgent care has immediate needs for support with alcohol and drug-related attendances. Legislation may be needed to enforce collaboration

Recommendation Three: Improving and standardisingoutcomes from stroke across the whole North West.

Actions• Department of Health guidance given to commissioners

in 2006 must be implemented by every PCT, with Greater Manchester PCTs also delivering the recommendations of the local review of stroke services

• Access to CT scanning should be commissioned to deliver a service of a scan within 24 hours for stroke patients within the next 12 months, moving to achieve ascan within one hour of request between 8am and 10pm, which would cover the majority of stroke patientswho could benefit from thrombolysis and head injured patients

• The role of telemedicine for stroke management and CT interpretation and the trauma resuscitation review in the North West, should be piloted and evaluated in the North West within 12 months, given the geographical constraints of distance and access in the region. If shown to improve patient outcomes, it should become aregional standard of care

Recommendation Four: Trauma should continue to bemanaged locally by the nearest appropriate receivinghospital in the first instance, but trauma care should bemanaged on a commissioned regional network basiswith specific work streams.

Actions• All hospitals should submit data to TARN UK. The

network should be able to demonstrate improved outcomes in patient care through regional audit activity, and use of regionally agreed pathways of care

• Commissioners should work closely with the ambulanceservice, emergency medicine and anaesthesia representatives, to evaluate the best way of providing advanced pre-hospital airway management. A three to five year plan should be developed to identify resources and relevant training for a robust and sustainable service and the benefits should be formally evaluated bythe trauma network

• The group strongly recommends consideration be given to improved neuro-psychological rehabilitation for head-injured patients, often young and without support. We are interested in exploring whether the services for stroke rehabilitation can also be used for head-injured patients

• The group believes that there should be increased neurosurgical bed provision in existing centres; hub and spoke care management for head-injured patients is notas effective as being managed on a neurosurgical unit

Recommendation Five: A range of intermediate careservices should be commissioned by PCTs that areknown to prevent the need for hospital admission, wherethis is a more appropriate solution to patient need

Actions• A cost-benefit gap analysis should be commissioned of

intermediate and rehabilitation services, to identify what patients want and the most cost-effective place to deliver this care. Any rehabilitation gaps should then be addressed appropriately

• PCTs should commission intermediate care that is needs-led and not restricted by age

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Case for ChangeThe North West has the second highest emergencymedicine attendances and emergency medicine admissionsof all SHAs regions after London:

• In 2006/7 there were 2,209,351 attendances at emergency medicine departments in the North West, an increase of 3% on the previous year

• We have 25 emergency medicine departments acrossthe North West, 25 walk in centres and 13 minor injury units

• 530,500 patients or nearly one in four who attended at emergency medicine departments were admitted

• 1,013,312 people attended walk in centres and minor injury units in the region

• GP OOH attendances have also increased, by 7%

The table below compares the number of emergency medicine attendances for the North West with other regions:

• Many patients who attend an emergency medicine department, including some of those who are admitted, could be treated elsewhere, for example by primary careservices such as health centres and GP clinics. There are a number of different services available and patientsare confused about these and how to access them. Thiswas confirmed at the public consultation stakeholder events in the North West. The chart below indicates the number of patient visits to emergency medicine departments over a 24 hour period.

The peak times for attendance are from 12 noon to 2pm and4pm, presumably reflecting times of GP home visits andwhen ambulance transport is available.

The people of the North West are high users of emergencyambulance services with the numbers of 999 calls increasingevery year. The rise was 5% in 2006/07 in the North West asa whole but with some areas e.g. Cheshire and Merseysideincreasing at a higher rate.

The chart below shows the number of emergency journeysby NHS ambulances in the North West, compared to therest of the country:

Ambulance services have been set targets for responding to999 calls, to ensure all members of the public can expectthe same standard of emergency response service.Emergency calls are categorised according to how severethe situation is:

• Category A calls the most severe

• Category C the least severe.

All ambulance services are now expected to respond to acategory A call within eight minutes.

The geography of the region presents an enormouschallenge for North West Ambulance Service (NWAS) andequitable provision of access to care. The North West hassome densely populated urban areas around Manchesterand Liverpool, but a large proportion of our population live inrural and remote areas. Increasing demand for ambulanceservices has meant that they often miss the call time targetsfor Category B and C incidents.

55

Emergency Medicine departmentattendances and admission

Source DH hospital activity Statistics 06/07 Source STEIS, HES

“Potentially at least 1 million patientsshould be able to benefit from swiftadvice and treatment at or closer to

their home or scene of the incident ratherthan being taken unnecessarily to A&E”

(Taking healthcare to the patient 2005)

% Type 1 Admitted/All Attendances

% Type 1 Admitted/Type 1 Attendances

Attendances per 1000weighted population

A&E Attendances and Admissions 2006/07

Patient Count

% of Incidents Resulting in an EmergencyJourney by NHS Ambulance Trust 2006/07

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Source data KA34 publication.The Information Centre for Health and Social Care.

Transportation rates vary aroundthe country from 60 – 77%

The ambulance service has looked at a range of alternativesto transporting the patient to hospital, including theemergency care practitioner (ECP) role and the developmentof a falls service based in Tameside.

Establishing a Clear FocusUrgent care affects a wide range of health issues and so itwas important from the start for the group to have a clearfocus for their review of urgent care services. The groupidentified three areas where changes could have the mostimpact within the region.

• Create a single point of access, which would give members of the public defined and standardised levels of care, whatever their perceived area of need. At the moment OOH services are fragmented. There are many different ways in which the public can access NHS services, with services provided by a number of different organisations

• Develop the concept of “assess to admit” rather than the current position of “admit to assess”. The implications of this for pre-hospital assessment and patients who might need transfer to a tertiary centre needs to be explored, particularly for those with stroke, myocardial infarction or severe trauma

• Review the barriers and enablers for access to intermediate care and how facilitated discharge can reduce length of stay. This means making sure that support is in place so that people can be discharged as soon as possible – this is particularly relevant for older people

The three areas outlined above need to be reviewed usingthe following over-arching themes and principles:

• Definitions – being clear about what we mean by urgent care services

• Roles and acquired competencies for the urgent care workforce

• Governance of urgent care services – ensuring that there are consistent levels of care

• Educational support – on-going development of the workforce; develop communications and information to educate the public

• The focus needs to be on pathways, not premises. We need to think about the best patient pathway and not beconstrained by the buildings currently in use

Single Point of Access for Urgent careWhat happens now?

Increasing numbers of people are choosing to access careat their emergency medicine department despite increasesin alternative service provision, especially after 5pm and atweekends.

The open access of an emergency department and thesuccess of the four-hour wait initiative has made theemergency department an easy option for the public to getcare. The NHS is working at full capacity and misuse of theemergency medicine department and seasonal increases indemand put a strain on the system.

There is a choice of urgent care services in and out ofworking hours, but we know that members of the publicoften choose an inappropriate service that means theysometimes have a poorer outcome.

Patients are confused about how and which service toaccess. Some patients from immigrant groups find itparticularly confusing to navigate access to urgent care, anduse emergency departments for their primary care healthneeds. This is especially noticeable in Greater Manchester,where many patients are not registered with a GP.

There are clear alternatives to emergency medicine in someareas of the North West, such as walk in centres and minorinjury units, but unless they are co-located and integratedwith emergency medicine departments to provide aseamless service, they do not reduce emergency medicinedepartment attendances.

The recent primary care access survey in the North Westhighlighted the significant numbers of patients dissatisfiedwith the opening hours of their GP practice outside normalworking hours.

This feeling was also expressed by the public representativesat the deliberative event held in September 2007. The figurebelow indicates aspects of primary care services that thepublic feel need improving:

Patients and the public are frusrated by:

• Delays in getting the services they need when they needthem

• Being passed from one service to another and having torepeat basic information about themselves

• A lack of clarity about which services they should use and when they should use them

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05

101520253035404550

Making sureservices areavailable to

all who

Gettingthings

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helpfulstaff

Keepingme informed

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Making iteasy toget in

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Quicklyresponding

to anenquiry

Being ableto contactthem at

weekendsand in theevening

0%

Which two or three of these, in your opinion,are the aspects of public services

that are most in need of improvement?

This map shows population density within theNorth West and illustrates the scale of the

challenge for ambulance services

57

that the barriers between primary, secondary care and socialcare are to be removed. Financial and other barriers alsoneed to be removed, to enable change to take place.Patients need a clearer idea of how services work. Patientchoice is also a priority, but the system should be direct thepatient to the most appropriate provider of care for theirneeds, irrespective of how and where the patient accessesthe system.

If a telephone call is made, the patient should beimmediately directed to the appropriate service as part ofthe same phone call, eliminating the need to phone backduring the day and out of hours.

Patients would then be seen faster and by the mostappropriate person, for example an emergency medicinedoctor, a GP, a GP trained nurse practitioner, a hospitaltrained nurse practitioner, a mental health worker, a fallscoordinator, a physiotherapist, a social worker, or districtnurse and so on.

This pathway allows integration and improved co-ordinationof services. Work needs to be done to define a range ofservices that complement urgent care whatever the time ofday, such as rapid access to a falls service, communitysupport teams, next-day consultant out-patient clinics andrapid access to social care packages

As part of Lord Darzi’s review, the national pharmacyreference group is currently working on an urgent caremodel for pharmacy that not only integrates pharmacywithin the pathway for access to medicines, but alsoincludes patient education to support self-care, and anintegration of the management of long-term conditions.Other bonus features will come with the implementation ofthe electronic prescription service, whereby pharmacies willbe able to access repeat prescriptions for patients when GPpractices are closed.

PCTs should commission pharmacies to provide emergencyrepeat medicines using a PGD model.

Case Study -East Lancs Out of Hours and NHS Direct

Integration and the benefits of local call handling for triage and admission diversion accuracy.

There is conflicting evidence on whether NHS Direct has increased the number of patients attending Emergency Medicine departments. However, some health economies have worked well with NHS Direct. East Lancs PCT’s OOHconsortium has achieved “exemplar” status, for linking services to NHS Direct in 2002. As part of this, an evaluation of the service was carried out by The Universityof Southampton (Val Lattimer et al). Dental links to NHS Direct have been set up and East Lancashire is upheld as a leader and model of good practice in this area.

NHS Direct has improved the front end “call taking” and triage function of the East Lancs OOH service. East Lancashire PCT used its commissioning power to see if the improved response could be sustained. It has been.

NHS Direct has gradually centralised over the years to improve cost effectiveness. Calls from the “core” advice service for NHS Direct can be triaged anywhere in the country. Some patients complain that it can take a long time to be called back to be given advice, although in general the core advice service is well liked by patients.

In addition, we also have significantly under doctored areasin the North West; according to a report from the NationalAudit Office (NAO), 14 out of 25 of the PCTs with the lowestnumbers of GPs per head of population are in our region.These include areas of high immigrant population soextensive social marketing will be required to make newprimary care services attractive and easy to access, 24hours a day.

Current (OOH) service provision

GP OOH services are commissioned by PCTs and are eitherrun as a GP cooperative or as a non-profit makingconsortium. Hours of operation are usually between 6.30pmand 8am, Monday to Friday and all weekends and bankholidays. Most PCTs have now re-tendered for their OOHservices and are only commissioning services that meetnational quality targets and are judged as value for money.

Currently for most people in the North West the first point ofaccess to urgent care is still by phone. The figures belowshow the average outcomes following a call by a member ofthe public to a GP OOH service:

• 35-45% calls result in telephone advice

• 40-65% calls result in an appointment at a primary care centre

• 15% calls result in a home visit

• 1-3% calls result in an emergency admission to hospital

There are many different routes for patients to access urgentcare services. Patients in Greater Manchester who call NHSDirect and are assessed as needing a GP appointment arethen re-assessed by their OOH service. As a result up to50% are assessed as needing nurse advice only.

Patients may also ring the ambulance services or their GPservice, or access NHS Direct by phone or on-line, and theycan receive a variety of responses. NHS Direct state that40% of their calls are for medicines information. Many of thecalls refer patients onto a further service, with the result thatthe patient has to repeatedly give the same information.

In the North West as in other SHA regions, there is a hugevariation in what individual PCTs deliver to patients as OOHprimary care services. Access to palliative care medicinesare seen as a priority in end-of-life and OOH pathways formost PCTs, but not all provide for re-supply of repeatprescriptions. Often these services are not integrated withother local urgent care services, such as communitypharmacies that could manage a significant number of callsand minor ailments, to relieve pressure on emergencymedicine departments and OOH services. The newpharmacy contract contains incentives for providing moreenhanced services. Since 2005, more pharmacies have beenworking extended hours, some up to 11pm and up to 100hours a week.

There is no or little electronic sharing of patient information,even between health care providers and certainly not withother services, such as social or local authority services.This leads to inconvenience for the patient, and potentiallyincreases clinical risk. It makes tracking of patients throughthe elements of the system very difficult in a timely way, forexample to manage the second opinion seekers.

What would a good pathway look like? In or out of hours it should not make a difference!

There is no disputing that commissioners need to work withurgent care services to ensure that they are joined up, and

with different service specifications.

These centres should not be just a primary care front end toemergency medicine departments (CEM position statementon Urgent care Centres in Hospitals, July 07), but provideintegrated primary and secondary urgent care together withsocial services.

Not all rural locations will be able to have local 24 houraccess to CT. In these cases, urgent care will need to bedelivered within its limits at a level 2 location OOH service.We suggest that these services could be named primarycare assessment centres and include a GP presence OOH.

Assess to Admit not Admit to AssessTimely assessment of acute illness should be availablebefore admission to the most appropriate hospital bed. Inthis section of the report, we explore what happens now todifferent groups of patients, in particular those who need toaccess stroke and trauma services. For both these groups,we set out what good care would look like.

What happens now?An assess to admit policy has different implications fordifferent groups of patients. These are:

• Patients with simple medical problems suitable for a patient pathway

• Patients with complex medical problems, often elderly patients and for whom a discharge date can often not be predicted (70% of all admissions)

• Patients who are severely ill for example as a result of astroke or MI or severely injured patients: who may need transfer to a higher level of care

Many emergency medicine departments as part of theredesign and streaming of emergency care developed aclinical decision unit, which maybe nurse-led, for thosepatients who are suitable to be managed by use of a well-defined patient pathway with a predicted length of stay.clinical decision units have been shown to be effective inreducing length of stay (refs Leeds & Chester). Thisapproach is appropriate for approximately 30% of allmedical admissions.

However, the remaining patients are medically complex,often elderly and the decision to admit is very likely to beaffected by a lack of information about their pre-existingstate of health and also their social circumstances. Suchpatients are not suitable for being managed on a simplepathway. It is accepted that GPs often admit patientsbecause there are no alternative services available,particularly beyond 9am-5pm and at weekends. However, ifsuch facilities were available in the community, inappropriateadmissions could be prevented provided that there is alsoopen access to diagnostics and timely access to the results.

To date, initiatives to channel patients to appropriateservices and avoid inappropriate admissions to hospitalshave been concentrated principally in secondary care byemergency departments, leading to a large increase in thenumber of short stays of up to one day.

The introduction of clinical decision units and senior clinicalassessment in acute care, results in early diagnosis, and inassociated early discharge. However this is a costly servicewhich is not recognised by PBR tariff, as the highest tariff isfor a 48 hour length of stay.

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In East Lancs, the OOHs calls are filtered out so they are dealt with locally which provides a much better service. The dental services are considering taking a similar approach with NHS Direct.

Local responsiveness is an important lesson.

Definitions of levels of careThere is currently confusion because of a variety of names,functions and services available in centres providing urgentcare, and differences occur between centres in even closelylocated services.

National definitions would improve clarity. The definitions fromthe College of Emergency Medicine should be adopted as astarting point for more detailed work, which should then beused as a commissioning framework for primary and acutetrusts. Suggested definitions are:

• Community level, based in primary care

• Minor injury units and walk in centres – not usually 24 hour services (see below) capable of some near patient testing and simple treatments, such as wound closure. These will be nurse led

• Local hospital which provides 24 hour access to emergency medicine, acute medicine, full 24 hour access to X-Ray and CT diagnostics, laboratory services and Level 3 critical care (intensive care)

• An urgent care centre should include primary care access and ideally be co-located. Streaming of patients to the appropriate practitioner is important

• District hospital which provides all the above, plus 24 hour specialist services such as surgery, orthopaedics and possibly obstetrics

• Full DGH with highly specialised services, and may be a sub-regional or tertiary centre

Proposed service configuration for an urgent care centreThe urgent care clinical pathway group proposes the followingservice configuration for an urgent care centre:

• Co-located and intergrated with primary care services, such as a nurse-led walk-in-centre during the day, and a GP-led OOH service

• 24 hour access to district nursing

• Access to Haps from 8am – 10pm

• 24 hour access to dental services

• 24 hour CT provision and capability, to interpret or transfer images for timely interpretation

• 24 hour access to laboratory and other diagnostic services, for example plain radiography and ECG

• 24 hour access to social services, for child protection andsocial care

• 24 hour access to mental health services and crisis support

• 24 hour access to pharmacy advice and support

• 24 hour access to midwifery

• An integrated clinical governance system

Although most elements of the centre would function and beavailable on a 24 hour basis, not all would be, or need to be,on the same geographical site.

The North West already has several urgent care centres each

• A stepped escalation and de-escalation of care for olderpatients with complex needs who prefer to stay in their own home, for example, in a virtual ward

• Integration of primary and secondary care to form an urgent care team, with in-reach or outreach from consultants. The role of acute physicians in the provision of acute clinics could be developed as the specialty grows in consultant numbers

• Greater integration of social and healthcare, but also of other care partners within and separate from health. This includes recognition that managing a patient at home may still have care implications for a spouse, partner, formal or informal carer

• Extended hours of GP availability

• Integration of IT systems to enable

• Sharing of patient demographics and history

• Reduced risk to patients, that is, access to most recent prescription drug list

• A clinical governance system which allows the appropriateness of admission diversion to be evaluated in a multi-professional environment

Stroke Services

What happens now?The international review of stroke care published in 2001 bythe stroke trialists’ collaboration found that patients weremore likely to be alive and independent in their own homeone year after stroke, if they received multi-disciplinary careon a stroke unit that was part of a dedicated stroke ward, asopposed to a general rehabilitation ward.

This set the standards for care on a stroke unit.

Patients with transient ischaemic attacks and stroke aretaken by ambulance to their nearest hospital forassessment, investigation and admission.

Drivers for change

The urgent care group identified a number of drivers forchange:

• The biannual Sentinel stroke audit analysis This assesses 12 key elements of care and an aggregate score is calculated. It shows that the care and services that patients with a stroke receive in the North West varies hugely, and is dependent on the area in which they live (see Appendix 2). It also changes from year to year with some teaching hospitals as well as district general hospitals appearing not to meet the basic standards for stroke care in 2006

• Development of thrombolysis as a treatment for stroke (10-15% patients are suitable)Access to CT scanning within 24 hours is already causing difficulty for some trusts. Under IST2, patients will need to access CT and a definitive report within oneto two hours of the request being made in order to achieve the time window of three hours from onset of symptoms to administration of thrombolysis. Under the current licensed guidelines and processes of care, thrombolysis will not be practicable in much of the remote North West, due to the long distances involved. If the clinical trial IST3 shows benefit from thrombolysis up to six hours after stroke, then more Cumbrian residents may be able to benefit from this

59

There is inconsistency the lack of co-ordination across theNorth West in the provision of alternative facilities. Thisparticularly affects the ambulance service, which has tomodify its procedures to variations in local requirements andservice availability. Co-ordination and standardisation of thevarious services provided for different levels of care wouldbe helpful, and also assist the public in knowing whatservices are available and where.

Case Study - Bolton Diabetic Service

Secondary care outreach or primary care in-reach- does it matter?

It has been accepted that community matrons are most effective when their work is focussed, for example on making sure patients get the right treatment and inappropriate admissions are prevented. From the patients’ perspective, it makes no difference whether the consultants’ and specialist nurse support reaches out from secondary care or is based in the community, for example in Bolton the diabetic service reaches into the hospital from a primary care setting, as opposed to the more common situation, from the hospital out to the community setting.

Case Study - The Virtual Ward

To demonstrate the effectiveness of a primary care initiative in isolation from secondary care.

Patients with long term conditions use urgent care most intheir last year of life. They are most likely to have exacerbations of their illness which may need an escalation in their care requirements. Croydon PCT developed the concept of a “virtual ward” in 2006, where each patient is managed in their own home. Clinical care is delivered initially by community matrons, and nurse consultants. Each ward has a ward administrator who co-ordinates the supporting services required, and the involvement of the patient’s GP if required. However, the ward runs from 9am to 5pm, Monday to Friday, and GPs can not admit their patients to it for an escalation in care package. Neither can patients be discharged early from hospital care to the wards. Patients are selected for admission to each of the 10 wards by the PARR predictiontool.

The Mayday Hospital in Croydon states that their admissions have increased and that they are not aware of any benefit from the 10 virtual wards. The PCT run systemworks in isolation to secondary care, as a means of long term conditions management.

This seems to be an opportunity lost, as with a different service configuration, it could also act as a means of admission diversion, by escalating care for a patient in their own home. Oldham PCT are looking to develop this use of a ward as a PDSA initiative (Lewis and Vassallo).

What Will Good Care Look Like?The urgent care clinical pathway group believesthat effective care would have the followingfeatures:

• Extended OOH alternative service provision to avoid admission if possible and where it is safe to do so, and ensure good quality care at home, such as access to intermediate care, extended nursing service, night sitting, and so on

Trauma Services

What happens now?The present system is that all injured patients are taken tothe nearest receiving hospital, irrespective of whetherneurosurgery or specialised services are available at thatsite. All DGHs used to have orthopaedics and generalsurgery with critical care support. However, with ongoingrestructure of healthcare systems, this is changing. Forexample Rochdale Infirmary will lose overnight surgery and afull emergency medicine department from April 2008, andBurnley and Fairfield Hospitals will not have emergencysurgery and orthopaedics.

Greater sub specialisation means that some specialistsurgery is equivalent to tertiary services, for example ingeneral surgery liver lacerations are transferred to the RoyalLiverpool University Hospital, and hip-joint reconstructionsare transferred to Arrowe Park Hospital, in the Merseyregion. Thus together with the recognised tertiary services ofneurosurgery, burns, and paediatric ICU, super specialisedservices are scattered across the region.

The practical problem is that, unlike with stroke patients, theseverity of injury may not be immediately obvious to either aparamedic, or indeed a doctor. It could be difficult to knowwho to transfer to a centralised level of care. As a result,there would be a dramatic increase in ambulance transfers,which would jeopardise the operational balance of the NorthWest ambulance service, and have significant trainingrequirements. Without more funding, it would not bepossible to provide this and maintain the current level ofservice.

Drivers for change

The urgent care group identified a number of drivers forchange:

• Access to a neurosurgical unit has been shown to have a positive effect on outcome, even where surgery is not required. The Merseyside region has access to Walton NSU, Manchester to Hope Hospital, Preston Hospital has beds for Lancashire patients and Cumbria patients have to travel out of region to Newcastle for neurosurgical support. The group feels that commissioners should drive improved access to neurosurgical beds, and also make provision for neuro rehabilitations, which, is a “cinderella service”

• The study of the value of a trauma centre with 24 hour consultant cover in the emergency department versus a trauma service, showed no benefit in patient outcome. There is no evidence in the UK for bypassing the nearest appropriately equipped hospital to go straight toa Trauma Centre (ref Stoke TC v Preston). Nevertheless, the NCEPOD audit, Trauma - who cares?, states that patients who are treated by staff who are accustomed to managing trauma patients have better outcomes

• As the patient’s airway may be at risk, following head or other injuries, early management and control of a patient’s airway has been shown to be of major benefit

• The group could find nothing to suggest the need to bypass the closest emergency department in order to access better care in a limited centre service with current service configuration. The patient can and often should be transferred on to an appropriate resource once the airway has been secured, and the patient’s condition stabilised as far as is possible for the journey

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• Stroke physician and CT interpretation availabilityand the European Working Time Directirve (EWTD)Not all hospitals will be able to staff a rota of stroke specialists and radiologists who can make the decision to thrombolyse. Neuroradiologists were found to be bestat CT diagnosis of stroke followed by stroke physicians, followed by “ordinary” radiologists in an Edinburgh study (ASSET Trial)

• Drive to centralise servicesOne method of managing the above might be to centralise services but in view of the very short time window, this is not practicable in remote areas, leading to unequal access to service provision, unless changes can be made

• ASSET 1, (action on stroke services: an evaluation toolkit for providers)Recommendation in this document, together with the recommendation in the National Audit Office 2005, and the advice to commissioners in 2006 from the DH for improvements could save 231 beds in the North West, the highest number in the country and the highestnumber of TIAs

What would good care look like?A review of the Sentinel audit data gives commissioners aclear guide to where services should be improved for the85% patients who will not benefit from thrombolysis. Eachof the criteria in the audit relates to services that should bewell within the power of any hospital to provide, if theservices are commissioned by the PCTs or practice basedcommissioners (PBC) groups.

Ensuring that all patients in the North West are able toreceive thrombolysis if suitable is a challenge because of ourgeography.

Different methods of transport, for example by helicopter, toa centralised service, are frequently not safe options in amountainous environment.

The same environment also makes it difficult to get goodenough communications to be able to use telemedicine.However, the potential of the telemedicine system beingpiloted at Guys and St Thomas’s Hospitals in London byTony Judd, and also in Edinburgh, needs further evaluating.This system would be particularly suitable in a remote area.Telemedicine has the added advantage that the strokephysician on call does not have to be in a central location.Thus the rota can be shared across the region byappropriately experienced physicians and radiologists. Itwould free the thrombolytic treatment of stroke from theneed to have a central premises, and still be able to providethe process.

Case Study

At the Countess of Chester Hospital, all TIA patients are risk assessed on admission using the Rosier score, and atsix or 24 hours using the ABCD score. This is used to stratify them into three categories of risk. If <55 years of age, high- risk patients are admitted and/or urgently assessed by a member of the stroke team. Low and medium - risk patients are discharged on aspirin and either dipyridamole or clopidogrel, and are reviewed in clinic within seven working days. If carotid endarterectomyis appropriate, they will receive surgery within two to three weeks of the incident.

• Review of the TARN UK North West web site shows that:- Not all hospitals contribute to this trauma audit and

research system

- The performance of those that do seems to be unrelated to size or reputation of the organisation. The performance in Oxford, for example shows betterresults than the regionalised trauma service in London, based on HEM.

Case Study - How Audit Benefits PatientsAn example of good practice is the Greater Manchester traumatic brain injury group, who have re-audited survival in head injury following changes in practice and have found an improvement in survival from 30-40% up to 60-80%. This makes a powerful case for trauma audit being compulsory within organisations and across the region.

• It would be inappropriate to transfer seriously ill and unstable patients from one hospital to another. There was recognition that service reconfiguration must always have the patient’s welfare foremost in the planning process, so it is proposed that surgeons travel to the patient instead. With networks being used more frequently between a group of trusts, in orderto provide EWTD 2009 compliant rotas for some surgical specialties, this situation is likely to be more common, for example the Cheshire and North Wales vascular network. It could raise contracting, governanceand health and safety issues for the travelling surgeon

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An indication of the trauma load for the region is shown in the table below, supplied by TARN UK. An ISS>15 is regarded as“severe” trauma, and it is this group of patients who always need the very best level of care to optimise their chances ofsurvival. However, there is an underestimate of the total of trauma patients, as not all hospitals submit data to the centre foranalysis. In addition, high frequency injuries such as fracture neck of femurs are no longer required to be included foranalysis. Thus, there is a proportionately larger underestimate in the ISS 1-7 group.

ISS DISTRIBUTION BY REGION

ISS TOTAL

REGION 1 - 7 8-15 16 - 75

Other TARN regions 38847 20.1% 114882 59.5% 39296 20.4% 193025

Greater Manchester 4741 20.4% 14225 61.2% 4289 18.4% 23255

Merseyside 3894 19.1% 13323 65.4% 3168 15.5% 20385

Lancashire 1430 20.4% 4130 58.9% 1446 20.6% 7006

Cumbria 174 15.0% 807 69.7% 177 15.3% 1158

Total 49086 20.0% 147367 60.2% 48376 19.8% 244829

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Trauma Care for ChildrenWhat happens now?

Children comprise up to 25% of all attendances at a districtgeneral hospital. Children with head injuries, burns, orsevere haemorrhage which may need surgery are taken tothe nearest emergency department for airway managementand stabilisation, prior to transfer to a tertiary care specialistchildren’s hospital. The North West is fortunate to have twoin the region, Alder Hey Childrens Hospital and the RoyalManchester Children’s Hospital. The child is transferred by ateam from the first hospital. If the child were seriously ill, notinjured, a paediatric retrieval team would be sent to collectthe child. The time sensitivity of “injury” consequences is feltto be paramount, and the risk of waiting for a retrieval teamas opposed to getting the child to a centre for definitive careis thought to outweigh the potential risk of transfer with aless experienced team in paediatrics. There used to beagreed criteria for transferring patients, but these havelapsed.

Children are severely injured less frequently than adults,making it difficult for an individual practitioner to accumulatesufficient experience. Training packages such as AdvancedPaediatric Life Support are crucially important for providingan assessment and treatment methodology for the first oneto two hours of care of the ill or injured child. Manyemergency departments do not have a paediatric trainednurse on duty all the time, so having a member of staff whois APLS trained is very important, at all times.

What would good care look like?The group discussed good trauma care for children andhighlighted the following features:

• Staff teams would be multidisciplinary, and have regular and improved training

• A regionalised rapid response trauma service, doctors with paramedics. These could be seconded SpRs in emergency medicine and/or anaesthetics, and it should be separately funded as a regional service

• Link the medically based advanced airway managementsupport service with the work of a regional transfer orretrieval team, to ensure viability, cost effectiveness of staff and improve the quality of patient care

• Network agrees sites for specialist service provision. The issue of surgeons who travel to the patient needs tobe explored, plus the practicalities of types of surgery with equipment that cannot be moved, such as cardiac bypass from CTC, Wythenshawe, Blackpool and Preston hospitals

• Network and commissioners ensure that NCEPOD recommendations are implemented and audit occurs in each unit

• Explore the use of telemedicine as in Cornwall.and Scotland. X-rays and CT scans are readily transmissible,although there are different software and hardware combinations in hospitals, making reception and interpretation from senders difficult. In Scotland, video-cams are used for supervision of resuscitation in outlying departments

• Ensure that a percentage of staff on every shift are APLS trained, and have experience of managing ill and injured children. Ensure that the clinical competencies mentioned in the Tanner Report are present within the workforce to a high performance standard

• Agreed protocols for deciding which patients are transferred to a tertiary or other specialist centre, and

what supporting service can be provided if no beds are available

• Achieve the above by establishing a clinically based regional trauma network, which would be responsible tothe PBC hubs and the SHA

Improve Access to Intermediate Careand Facilitated Discharge

What happens now?The urgent care pathway starts in the individual’s own home,in the community.

Because these pathways are complex, input is required by avariety of providers from different sectors; for example apatient can be discharged home without the walking orhome aids they need, because they have to be sourced fromseparate providers. The present system is fragmented usingmultiple NHS, social care and commercial providers.

Different budgets belonging to different contributingagencies tend to undermine the concept of “shared care” fora complex patient.

The definitive responsibility for getting a patient home andallocating resources in a timely way is sometimes indistinct.

Therapists based in emergency medicine departments andAMAUs also assist in preventing avoidable hospitaladmission.

Case StudyGood practice was identified in St Helens and Knowsley; both health and social care services have combined to provide seamless discharge packages for children with complex needs.

Case study Three pathways that can work well are those for fractured neck of femur, joint replacements and pneumonia, as they integrate rehabilitation services, which could be hospital or community based. However, community care may be more expensive.

Case StudyMany patients who need urgent care turn to the ambulance service as a first point of contact. In many cases the ambulance services decide that a visit to emergency medicine is not essential. This is an opportunity to deal with problems that are developing but are not yet serious enough to require high level intervention.

Many falls patients fit into this category. Tameside and Glossop PCT in partnership with North West Ambulance Service have operated a Falls Referral Pilot, which started in October 2006 and the number of referrals to emergencymedicine departments has reduced. Further work should be done to evaluate the benefits of early alerts to local services by the ambulance services for a range of conditions, in order to screen and intervene where individuals are felt to be at risk.

What would good care look like?Intermediate Care Standard 3 in the 2001 NSF for OlderPeople describes the key functions of intermediate care.The recommendations of the urgent care group build onthese principals. Intermediate care should be based on

comprehensive assessment resulting in a structured individual care plan which involves active treatment and rehabilitation.This must be time limited, normally no longer than six weeks in duration although many interventions are shorter.Interventions are often intensive and must be delivered rapidly at shorter notice in order to avoid the breakdown of health andsocial care supports in the community.

Intermediate care facilities and services provided by social services or the independent care sector, have to be registeredwith the CSCI (Commission for Social care inspection) or the Healthcare Commission who specify the ages and conditions ofpatients who can be admitted to each facility. Although most urgent care patients requiring intermediate care will be agedover 65, these services should remain needs led and should not turn people away on the grounds of age. The grouprecognises, however, that problems can arise as changes are sometimes required to the registration of a facility throughCSCI, this is often a lengthy process.

The diagram below illustrates the groups proposed pathway for urgent care:

The need to optimise the pathway of care for older peoplewith complex needs is emphasized below, by Prof Ian Philp,DH lead for older people’s care:

“The importance of optimising the acute pathway for olderpeople with complex needs as they occupy 70% of acutehospital beds and are likely to suffer from healthcareacquired infections, lack of dignity in care, delays indischarge, and high rates of readmission. We also recognisethe interdependence with optimising community basedservices, including intermediate care and long termconditions management. It is clear that there is an ongoingneed to work together to support the reconfiguration ofservices for older people with complex needs.”

The recent DH document recommends that multi-disciplinary intermediate care in the community should beone of the options considered for older people in order thatthey receive specialist assessment, and care planning anddelivery. This may need a return to consultant led domiciliaryvisits, especially by the care of the elderly team. The BritishGeriatrics Society has recommended that the communitygeriatrician role should be developed (BGS Geriatricians andthe management of long term conditions, Feb 2005). This is

a key component of developing intermediate care in thecommunity as it brings the expertise out of secondary careto support intermediate care services.

It is significant that these same issues exist for children withcomplex long term needs and the elderly mentally ill, as forthe elderly with long term conditions.

From a GP’s point of view, referral to emergency medicine ismade because they are often not sure of what else to do,particularly outside of normal hours. A single point of accessfor all available services should be developed, for GPs andother primary care providers.

There is evidence that intermediate care at a communityhospital significantly reduces the number of readmissions fora general hospital. In addition, a significantly higher numberof patients were independent of community care after followup, without any increase in mortality and number of days ininstitutions. The group has debated whether older peopleactually want to be looked after at home as an alternative tohospital care, and opinion was divided. We need to ask thisgroup of patients what they would prefer.

Proposed Urgent Care Pathway,the same services which provide escalated care should be

able to provide “de-escalation” back into the community setting

Patient with complex medical andcare needs (may not be elderly)

Patient develops exacerbationof long term condition

Gets escalated level of care athome or primary care setting

ie: “virtual ward”

May involve admission to GPsupported/community matron

led intermediate care bed

Deteriorating condition warrantshospital admission followed bydischarge straight home, rehabor intermediate care services

Escalating care provision

De-escalation of care

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What would good care look like?The role of community matrons and active case managers,with access to physiotherapy, pharmacy, diagnostics and soon, is proving to be useful in some areas as part offacilitating the smoothest care pathway for more complexpatients. In Salford, allied health professionals occupy someof the active case manager posts. In future, we should bematching the needs of the patient to the best person to givethat care, irrespective of traditional boundaries ofresponsibility.

From a strategic point of view each health and social careeconomy should be able to demonstrate robust jointcommissioning and integration of services. This is one of theessential hallmarks of excellent intermediate care practice,as many barriers present at service delivery level on thepatient pathway where this is not the case. A further key tosuccess is the existence of a detailed strategy fordeveloping intermediate care, the delivery of which isoverseen by the joint commissioners.

Rehabilitation servicesTimely availability of appropriate beds for rehabilitation is aproblem in some areas, so providing rehabilitation inpeople’s own homes should be considered. Areas thatprovide a range of rehabilitation alternatives, such as nurseor therapy led beds and hospital at home-type services, andso reduce the need for hospital admissions include Bolton,Salford, South Manchester, and Liverpool.

Hospital utilisation studies across Greater Manchester haveshown the benefits of nurse or therapy led intermediate carebeds in diverting patients from emergency medicine andMAU’s, rather than an acute hospital admission.

Several cost benefit analyses of these alternatives havebeen carried out. Substantial additional costs to communityservices would be expected through increased hours ofservice. However Campbell, Karnon and Dowie, found thatthe cost of hospital at home care for elderly patients wasless than hospital based care provided that it did not exceed14 days. On this basis they secured funding for their rapidresponse service. They used different costing methods tothose used in Bristol and Northamptonshire, where a widerspectrum of care costs were assessed, and thus accept alimitation on the generalisation of their findings.

If patients are stepped down following hospital basedrehabilitation or other forms of hospital care, it is essentialthat the local health and social care economy has developeda range of step down options that free up the acute beds ina timely fashion, in order to ensure that delays in dischargeare avoided.

Education and TrainingWhat happens now?Education is determined and provided by each individualprofessional group, with each medical specialty and generalpractice also providing teaching for their own medical staff.The curricula are determined by our statutory educationalbodies ie the Royal Colleges, the Deaneries and PMETB,and other professional organisations. Paramedics and alliedhealth professionals have their own curricula and schools fordelivery.

However, urgent care needs to be delivered over a spectrumof severity, and in a variety of environments, by a widevariety of staff. There is a great deal of overlap in eachothers’ practice and our educational curricula.

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The group agreed that the “skills for health” package wouldbe useful, provided that patient pathways could be agreedfirst, and work undertaken then to decide whatcompetencies would be required to deliver the pathways.

What needs to happen in the future?The future provision of urgent care demands high qualityskills from a range of professionals including paramedics,emergency nurse practitioners, GPs, emergency physicians,and acute physicians. The UK Centre for the Advancementof Inter-professional Education (CAIPE) recommends thecreation of an inter-professional workforce that canunderstand each other’s roles and perceptions, leading toimproved communication and collaboration. The proposedmodel of “single point of access” will help to breakdowntraditional boundaries between professional groups, andenable a culture of inter-professional teaching and learningat the workplace.

The Academy of Medical Royal Colleges has called for thestrengthening of emergency care training for GP specialisttrainees and the development of GPs with special interest inemergency care. The need for incorporation of urgent carecompetencies has also been highlighted by the RoyalCollege of General Practitioners. The provision of urgentcare training to GPs, leading to a higher qualification inurgent care is a valuable option that merits furtherconsideration. Acute physicians could have a useful role inthe delivery of this.

Training of healthcare professionals must suit the needs ofthe service now and in the future. In addition, plans forreorganisation of services should give due consideration tothe most appropriate level of training of those involved inpatient care.

Clinical leadershipEffective leadership from clinicians is crucial to enhancingthe delivery of healthcare within the NHS. Clinicians at thefrontline of patient care need to have the motivation and theskills to be able to make changes within their organisations.High quality training focus should not only on clinical areas,but also on management and professional skills. Thepostgraduate medical curriculum within the North West willcontinue to address the needs for such skills in a wide rangeof health professionals. Equally, supporting professionalswell after qualification will ensure their continuedinvolvement in improving patient care.

Case Study - PED and SPED coursesA small team of educators based at the North Western Deanery have been conducting professional and educational development (PED) and senior professional and educational development (SPED) courses for GPs. The courses are designed to address the need to develop highly skilled clinicians to manage and lead changes within the modern NHS. The courses, part funded by the deanery, incorporate residential modules spread over a period of two years and accredited by the University of Central Lancashire towards a Masters qualification. Over the last 12 years, a number of GPs have gained valuable skills to be able to cope with the complexities of the healthcare system. This scheme has now been expanded to incorporate consultants.

Major Barriers: What is Preventingthis Happening Now?

The barriers to creating a fully integrated urgent care serviceare:

• Information technologyThe biggest barrier to managing patients through a single point of access safely is IT. There is very little shared electronic information between healthcare professionals, social care and patients for example different models of PACS X-ray systems do not communicate with each other

• Financial flowsFinancial flows through PBR need to be examined. At the moment PBR does not encourage the right treatment for patients in the right setting, and the new standard contract due to be implemented in April 08 willmake it very difficult to commission integrated pathwaysacross organisations

The proposed penalties for missing patient service delivery targets could discourage trusts from accepting their share of critically ill or injured patients, who are likely to need a long stay in a critical care area and impair the trust’s ability to meet the 18 week elective target

• Cultural resistance to changeIntegration of clinical teams is essential if we are to improve urgent care for patients. This must also include changes to working practices for some professionals. However, there are also powerful political constraints to change, namely the will of the electorate

• Workforce and educationWe need an appropriately skilled workforce to effectivelydeliver urgent care .The ambulance service could support alternatives to transportation to acute hospitals if they had the support to develop their staff. There is nomechanism at present to encourage or develop integrated workforce planning. Thus the competencies needed to deliver care do not match patient pathways

• Public perception and behaviourCurrently a significant number of the public see emergency medicine departments as the solution to their healthcare needs and they know that the emergency medicine wait will be under four hours. It will be a challenge to encourage the public to access other services

• Social care is a separate organisation to healthSocial worker reviews of patients are often only undertaken when the patient is medically fit. This ensures that the outcome for the patient is appropriate, but can lead to delays, which can then be further complicated by new medical problems. The distinction between medical and social discharge is a barrier, as is the fact that in some areas there is no common integrated pathway, no common processes or documentation

• Limited alternative service provisionProvision for alternative services rarely extends beyond 9-5, Monday-Friday and to further extend hours would be very costly. Job acceptability may become a difficultyfor current post-holders if they were required to work unsocial hours. It would need higher numbers of staff and more training leading to increased expenditure. At the moment services are only funded for 40 hours per week, whereas health and social care is required for the full 168 hours per week.

There are other gaps in OOH service provision as part ofprimary care e.g. pharmacy, but this can be addressed by liaising with commercial staff

• No identifiable pump- priming monies to allow service changeThere needs to be an expansion in primary care servicesto be effective in reducing bed days and readmissions. However, it is difficult to see how this can realistically beachieved without dual funding during an implementationperiod. This means that major system changes moving care closer to home will need pump-priming funding

• Access to diagnostics and resultsInadequate access to appropriate diagnostics, interpretation and communication of results is a problemacross services, whether these are 9-5 or out of hours. This is made more difficult in geographically remote areas by distance and service provision. For example radiology, will need a system that allows timely interpretation and communication of the results, particularly for stroke and trauma patients. This is likely to involve wider use of telemedicine and increased use of networked clinicians sharing duty rotas across organisational boundaries

• Lack of regional forum for responsibility, coordination and planning for trauma servicesIncreasing sub-specialisation in surgical specialties and loss of surgical specialties in some hospitals without overall coordinated planning does not help service improvement. Trauma care is currently a fragmented service. In order to provide specialist care for all, severe trauma assessment in a limited number of centres, orsuper-hospitals would be needed, not just super emergency medicine departments. Staffing these would severely deplete and damage the existing surgicaland critical care infrastructures

• Geographical constraintsThe geography of the region already presents significanttime and transport challenges for patient care. When planning for specialist tertiary transfers we need to take into account that the further the distance travelled, the higher the risk of death in trauma patients. This may be manageable for urban areas such as London, but not in the North West. The natural geography of this region makes it difficult to deliver equal access to the same investigation and treatment options in time sensitive conditions such as stroke and MI, within the current service and transport constraints

• Service constraints in the ambulance service imposed by centralisation of servicesParamedics are not all currently trained in critical care recognition and decision making. Patient transfer over long distances will affect the numbers of vehicles available for other 999 calls and affect emergency response times and achievement of targets

• Limited staff and skills pool NCEPOD ‘Trauma-who cares?’ recommends staffing ambulances with doctors who are capable of advanced airway management for injured patients. Anaesthetists are currently struggling to staff EWTD compliant rotas, so there is not a ready pool of trained doctors who could be seconded from existing rotas. The new group of specialists required to achieve NCEPOD recommendations has not been accounted for in currentworkforce planning calculations. At present wherever they were recruited from would leave a gap in numbers and service delivery

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• Communication and dissemination of learningThis remains a major barrier to good quality and safe practice for patient care. Between professionals, information also needs constant review and updating sothat staff are fully aware of services that are available and relevant pathways.

The group has identified areas of good practice during the review process which was previously unknown to us, despite being local. There does not appear to be a sound mechanism/medium for sharing information, action learning, pilot results and so on, with the result that we repeat the same mistakes again and do not benefit from each others’ experiences

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Appendix 1Review of Alternative Models for Urgent Care

The group reviewed alternative models for providingurgent care, both national and international. Thesemodels are outlined below:

• In Montreal, Canada, a change in legislation was required to integrate health, public health and social care. A transfer of 30% of funding was needed from hospital into primary care, to achieve the service specification required and address the OOH need in primary care. Strong performance management is a key feature using benchmarking, rather than absolute targets thus encouraging continuing improvement.

• The Kaiser Permanente system in America provides a large centre, similar to a small district general hospital that provides extended hours and access to urgent care. They control the total number of urgent care attendances as there is a small charge for access. Specialist physicians work out in the community routinely. There is an integrated electronic patient recordwhich patients have open access to. This can be used for patient advice and guidance, extending to services such as an on-line anticoagulant clinic. The patient

owns own their record and can input data on to it for regular health monitoring

• In Tiverton, Devon, two large GP Practices provide a GPSI led service for access to urgent care. and also provide step-up and step-down beds in a cottage hospital environment. 60% of patients are admitted by their own GP. Access to diagnostics is mainly in-hours only. The GP on call service provides medical cover for inpatients as well as staffing the urgent care centre. Although this model of care works very well now, we had concerns that since the GPSI model is no longer favoured by the Royal College of General Practitioners, it is not sustainable in the long term as appropriately trained GPs will no longer be available. The system was also recognised to be expensive

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Appendix 2Review of Stroke Care: Sentinel Report

Comparison of the Sentinel audit data sets for 2004-6across the North West clearly shows which hospitals havemaintained or improved their level of service.

The audit reviews 12 criteria relating to patients’ treatment instroke units:

• 50% LOS stay in stroke unit

• Screening for swallowing <24 hours from admission

• CT scan within 24 hours

• Aspirin by 48 hours

• Physio assessment in 72 hours

• OT assessment in seven days

• Patient weighed during admission

• Mood assessed by discharge time

• On anti-thrombotic therapy by discharge

• Rehab goals agreed by multi-disciplinary team

• Home visit done before discharge

Some of these criteria relate to basic standards ofacceptable cover. Some units appear to have lost servicessuch as a home visit performed before to discharge. Withincreased availability of CT scans, it was surprising to notethe number of units where it is still not possible to get CTwithin 24 hours.

The group felt that each of these standards should be easilymet in every DGH, and available to all, provided thatcommissioning is sensitive, and performance manages theservice provided. The group did not feel that these resultsmade a case for rationalisation or centralisation of services,as improvement in the basics would benefit 85% strokepatients, as close to their homes as possible.

MERSEY & CHESHIRE

GREATER MANCHESTER

CUMBRIA & LANCASHIRE

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Bir

thC

hildre

nSta

ying h

ealt

hy

Menta

l healt

hAppendix 3

Cross Cutting Themes

Crossover issues for North West NHS Review clinical pathways

Guide: Reading across, the pathway on the left is the ‘lead’ pathway in relation to the crossover issue. So for example, birthwould lead on breastfeeding, but there is a clear crossover with children. Similarly, the children’s pathway would lead onparenting, but there is a clear crossover with birth.

Issues raised Issues discussed or resolved

• Access to acute USS for PV bleed Midwives were unhappy to be included in the 888 number for access. in pregnancy Wanted to be separate from urgent care centre.

• Palliative Care provision Joint statement agreed with paediatric group as follows “Where both• Tertiary provision paediatric and adult access to acute services were co-located• Medicines safety (and it would be difficult to separate the point of access for the two • Rehabilitation populations) then there has to be appropriate paediatric experience • NAI available to the child and family. This access is seen as crossing • 20% attendances to emergency primary, secondary, tertiary services boundaries including NHSD

departments are children - most with Standards are already provided in the NSF for children and the* Injury tanner report. Paediatric acute services should be organised along * Temp & unwell managed and integrated networks, which would be responsible for

establishing appropriate standards for care, management and trainingSpecialist paediatric services networks would be organised around specialist lead centres at the hub, with peripheral centres alongreferral and treatment pathways both in and out of the centres”

Intermediate and self care Role of the expert patient and parent, The effect that direct payment would have and issues for healthpromotion

• Falls prevention Alcohol. Suggestion from staying healthy group to provide “front end” • Reducing avoidable admissions staff educated to discuss with patients at time of attendance.• Uptake of screening Recognition that alcohol is a major problem to both groups and is• Uptake of imm and vac reasonable for many urgent care attendances and admissions• Effective chronic disease management

of high risk pts• Targeted smoking cessation,• Weight management, appropriate

prescribing and physical activityprogrammes

• Liaison Could access to crisis team be via SPA. The mental health group had• Deliberate self injury/harm no issue with telephone referrals to team, but did not support access• Multi-agency working and to individuals. Wanted emergency medicine to screen all new referrals

information sharing to crisis team. Not willing to be collocated with urgent care centre• Alcohol and illegal drugs and effects Problems of under and over 65 difference. Reluctance to review

on injury and self harm. patient who attends emergency department after alcohol (however• COPD, renal failure, heart failure - small). Happy to provide training in assessment to emergency

urgent care excluded rom care plans medicine department staff, but not take referrals de novo as part ofand limited access to resources in the urgent care centre. Appointments could not be made for the community prevent admission. psych team by another professional. Electronic records a sensitive

• Depression provokes OOH access to issue for GPs. CAMHS issue unresolved - under resourced and noturgent care often very accessible, especially as an emergency

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Long t

erm

condit

ions

End o

f life

Pla

nned

Issues Raised Issues discussed or resolved

Need to develop SPA and alternativeAccess care plans for revolving door patientsIntegrated recordsVirtual ward as alternative to admissionRehab for stroke (hospital or home) discussed. Considered whether neuro rehab for head injured patients could be combined - felt not appropriate because of age difference. LTC group asked to consider plans for this often neglected younger age group

Elaboration on ‘virtual ward’ ideaExpectation of extended GP hours could possibly be managed through integration of services in urgent care centre Importance of electronic record emphasised Holder of clinical responsibility for patients of intermediate care is still unclear, especially with OOH services

• Need to integrate all elements of Recognised that patient, relatives or carers ultimately will make aurgent care into end of life care plans. decision at times where to attend, but most would prefer to avoid

• IT infrastructure admission• Catchment areas for End of Life Links with palliative care, especially OOH need to be strengthened.

populations Electronic records of care plan would be ideal so all organisations• Supportive Care Register would involved in care could access them

be useful• Advanced Care Planning linked to

LTC communicated to A&E andprimary care and OOH(or single integrated service)

lobar pneumonia and severe heart failure. 1.What are the problems today with access to the right

facilities for her care?

2.How will the new pathway improve her access to care? Who/where will she be treated to ensure she is safe to travel 30 miles?

3.Will the new pathway help her to get home quicker?If so, how?

Case study 6Jack is 90, has mild dementia, and diabetes. He has been shivering a lot and vomiting for 24 hrs. The district nurse calls to dress the ulcer on his left ankle. He fell yesterday but didn’t seem to sustain any injury. She finds him today, very confused, and sitting on the floor. He has been incontinent and the urine smells as if it is infected. He is unable to get up, even with help. He gets panicky and anxious anyway in an unfamiliar environment. He is the main carer for his wife, who is 92 and has severe rheumatoid arthritis.

1.What should happen to him at this point?

2.What will the new pathway provide for him which will improve his quality of care, life, dignity and independence?

Case Study 7Baz, a 26 year old male who has been drinking with his mates, crashes his car on a wet, wintry night through a hedge and into a field. The car rolls and his three mates are thrown out and run off. He is seriously injured, and trapped in the vehicle. It is 40 mins before he is cut out and arrives at hospital 50 minutes after the crash. His GCS is 7 and he has a large boggy swelling on the r side of his head and a r black eye.

He is assessed by the Emergency Medicine SHO, and the patient vomits while he is being examined and aspirates. He is tachycardic and hypotensive, with an open fracture rfemur. The anaesthetist is called to intubate the patient and XRs are taken in Resus (trauma series)

The orthopaedic F2 cannot put on a traction splint, and his SpR is in theatre. 40 mins later, it has been done. The patient then goes for CT, with an unstable blood pressure, after fluid resus with crystalloid (3 litres) of 70/50.

He has an extradural on the right, and the scan is discussed with the neurosurgical unit. Arrangements are made for his transfer, but his blood pressure drops further,to 50 systolic. He is taken to theatre and a small tear in the liver is packed. The femur is washed out and splinted properly.

1 Where should this patient be managed now?

2.Summarise the major problems in trauma management.

3.How could this pathway be improved?

4.Can good trauma care only be delivered in a “super-specialist” hospital, ie - a trauma centre?

Case study 1A 72 year old man has COPD, uses steroids intermittently and regularly to help his breathing. He has had green sputum for 24-48 hrs and is more breathless than usual. His wife died four years ago, and he gets very lonely and depressed. Just before getting into bed, at 8.30pm, he has a severe bout of coughing and wheezing which leaves

him exhausted and frightened.

1.What would you expect him to do, with the current systems in place?

2.How would he access our improved pathway, and how would the care he receives differ?

Case study 2A 42 year old lorry driver has had indigestion for the last four hours which has got so bad, he had to stop driving. He is a smoker and has never had his cholesterol checked. He is overweight, and has a family history of hypertension and stroke. He is brought to emergency medicine by ambulance.

1.Would he inevitably be admitted?

2.How could he be risk assessed, and what can be done to determine the need for admission?

3.Will the new pathway offer him an improved service in any way?

Case study 3A 56 year old lady with type 2 diabetes has had an insect bite and now has cellulitis around her left ankle. It is very painful and at 5.45pm she phones her doctor.

1.What would you expect to happen now?

2.What difference would our new pathway make?

Case study 4John is a 77 year old man and had a R hemiparesis and dysphasia seven days ago. He normally lives alone. He is on statins, nitrates, beta blockers, aspirin, digoxin, metformin and quinine tablets. He is a bit forgetful, and hisdaughter is worried how he will manage his tablets and to look after himself at home. She lives in London. He still needs to walk with one helper to the toilet and is a bit wobbly on his feet. It is Friday today.

1.What would be the usual discharge arrangements ?

2.How would our new pathway help him, and reduce length of stay in hospital? How will he be supported in the community and where?

Case study 5Mary Kelly is 82 and usually well except for occasional breathlessness at night time. She has been feeling very muddled and unwell for 24 hrs over the weekend, and Monday afternoon, a neighbour finds her on the floor, gasping for breath, blue and very drowsy. She rings 999 for Mary, who lives 4 miles down a single track, no through road at the base of Skiddaw. She lives 30 miles from her nearest level 2 capability hospital.

On arrival at hospital, she is found to be in new AF, with

Appendix 4Scenarios to test new pathways

70

Appendix 5An OOH Emergency Dental Scheme in GreaterManchester operated by NHS Direct and Rocky LaneDental Practice

The introduction of the new dental contract in April 2006was similar to the new GPs contract, in that responsibilityfor the OOH Service passed to the PCTs. Incidentallydentists are only contracted to see a patient with anemergency if they are under going a course of treatment,have had work completed within the last two months or thework fails within 12 months. This is because the new dentalcontract has removed the concept of a patient list from thedental practice. Professionally dentists generally see theirown practice patients, as explaining this is some whatconfusing to dentists and patients alike.

Each PCT has a responsibility to provide a service ofemergency care for patients for both patients during workinghours and OOH.

One of the suggestions for PCTs that came from the DH wasthat they should merge their Dental OOH services with otherlocal PCTs, rather than try to operate in isolation. Economiesof scale being the order of the day in areas of the countrywhere patients would not have to travel too far for theiremergency dental treatment.

In the latter part of 2005 a total of 10 PCTs in GreaterManchester anticipated the contract changes and set uptwo separate consortia. One covered North WestManchester, the other covering the Eastern, Central andSouth Western parts of the city. Although the contracts didnot offer 100% coverage, they did mean that two dentalteams, rather than one from each of the ten PCTs, couldcover approximately 600 square miles and over two millionresidents and visitors.

A total of 25 surgery hours per weekend has so far beenable to cope with patient demand although Boxing Day2006 was an exceptional challenge! During the week twodentists are available each evening for treatment or to givetelephone advice. All surgeries follow a strict policy ofdefinitive treatment.

Approximately 4,406 patients used the services over thepast 12 months with approximately 30,882 calls accessingthe service for triage.

Initially calls are triaged by NHS Direct in its Bolton CallCentre. NHS Direct has a team of experienced dental nurseswho are highly trained in phone triage and homecare advice.Over 90% of calls are answered within 60 seconds and 97%are triaged within the hour. Following the nurses assessmentthe communication system enables confidential patientinformation to be transferred electronically, via Adastra, toone of six local clinics.

Other services offered by the OOH team include:

• Patients without a dentist offered help to locate one with the help of the constituent PCTs

• Follow up treatment arranged via PCTs

• Every patient receives a follow-up phone call within five days of treatment, just to make sure that all is well.

• A dedicated web site includes route guidance and mapsto help the patients to find the locations of care. The web address is the same as the emergency phone number that the patients already knowwww.08456018529.com

• An OOH Domiciliary Service

All patients are encouraged to complete a Feedback form.Some quotes are listed below

“Telephone service very helpful and provided advice andwas knowledgeable. Once at the surgery

I was impressed at the service provided - veryprofessional and prompt. Thank you!”

ID 2268 Sept 2007.

“Absolutely excellent service. Referred by NHS Directand received phone call to arrange

my dental appointment. On arrival at the hospital I wasseen straight away. Fantastic!

ID2260 Sept 2007.

71

72

Does the patient meet criteria foran Emergency Dental Referral?

Is there a history ofTrauma/Swelling/Bleeding?

Is the on call Dentist available?18:30 - 22:00

Yes

Refer patientto Dentist

No

Yes

NoIs it Friday after 22:00?

No Yes

Does the patient meetthe referral criteria due toirreversible pain despite

taking adequate pain relief?



No

YesYes No

Advise to attendA&E Department

if the caller’s symptomsneed to be dealtwithin the hour

Give Home Care Adviceand arrange appointment for

the first clinic availableSaturday, utilising all

10 slots if needed

Patients should be advised tocontact own Dentist or PALS

the following working day.Alternatively you can look on

www.nhs.uk for local dentistswho are registering new patients

or who provide urgent accessslots for unregistered patients

Appendix 6The two flow charts below show how the service works:

73

Appendix 7

Does the patient meet criteria foran Emergency Dental Referral?

Is there a history ofTrauma/Swelling/Bleeding?

Are there clinic slots available?

Yes

No

Yes

No



Advise to attendA&E Department

if the caller’s symptomsneed to be dealtwithin the hour

Give Home Care Adviceand arrange appointment for

the first clinic availableSunday, utilising all10 slots if needed

Patients should be advised tocontact own Dentist or PALS

the following working day.Alternatively you can look on

www.nhs.uk for local dentistswho are registering new patients

or who provide urgent accessslots for unregistered patients

No Yes

Is it after21:00?

Yes No

Arrange appointment fornext available clinic slot

Patient seen at locationof care and treated

Is it after21:00?

Yes

Refer patient to Dentist

Patient seen at locationof care and treated

Refer the patient using theAdastra technical link,documenting LOC andtime of appointment inthe Clinical Summary

74

Patient phones GPtelephone number

Patient self refersor rings 999

Patient emails orphones NHS Direct

Patient gets OOHtel. no. from own GP

Call handler advises

Advice solvesproblem

Patient advisedto phone GP

Call handler streams out emergency 999 calls and agrees tophone back - this can take up to 30 mins depending on triage category

Advice givensolves problem

Nurse or doctor phones back

Appointment

Primary care OOH servicePatient discharged/referred

to other OOH service

Seen by A&E deptand/or speciality

Admitted if unable to cope aloneirrespective of medical need to admit

Discharged with adviceand/or treatment

May need transport by ambulance

May need transport by ambulance

Appendix 8Current Access to Urgent Care Out of Hours Services

75

Patient rings point of access numberor GP tel no and forwarded on directly

Patient self presents to EmergencyMedicine/Urgent Care Centre

Call handler streams out emergency999 and passes direct to Triage System

Advice resolvesproblem

Healthcare professionals bypassTriage System to access

GP VisitsCommunity Staff

Urgent Care Centre

Advice only DischargeGP to see in OOH surgery based inEmergency Medicine Department

Admitted ifrequired

Discharged withadvice and/or

treatmentOptions by direct transferfrom urgent care centre:

PharmacyDentist

CPN/Crisis TeamDistrict Nurse

MidwifeSocial Services

Palliative or Intermediate Care(locally sensitive)

Triage System to assess need for face toface appointment - could be byNHS Direct if locally sensitive

Appendix 9Proposed Pathway for Access to Urgent Care Out of Hours Services

76

Appendix 10Membership of Urgent Care Clinical Pathway Group

NHS Review - Urgent Care Main Group

Name Specialty Trust

Ben Atkins Dentist SalfordKaren Campion Facilitator NHS North WestMike Cheshire Medicine Central Manchester and Manchester Children’s

Hospitals NHS Trust RCP, LondonDenis Burke Consultant Physician in Gastro North Cumbria Acute Hospital NHS TrustAndy Darbyshire Nurse Consultant - Paediatric Intensive Care Royal Liverpool Children's NHS TrustSaleem Farouk Consultant A&E, Assoc Dean Pennine Acute Hospitals NHS TrustEmma Foreman Assoc Dir Emergency Care Trafford Healthcare NHS TrustSuzanne Hinchliffe Dir Nursing, Midwifery & Governance St Helens and Knowsley Hospitals NHS TrustRichard Lea Acute Physician The Royal Liverpool and Broadgreen University

Hospitals NHS TrustBrian Lewis GP & Clinical Exec Member Oldham PCTDamien Longson Clinical lead on emergecy mh services Manchester Mental Health and Social Care TrustKevin Mackway-Jones Medical Director/Consultant North West Ambulance Services NHS TrustDon MacKechnie Consultant Emergency Med Pennine Acute Hospitals NHS TrustPhil Haji-Michael Snr Cons. Critical Care & anaesthesia Christie Hospital NHS Foundation TrustMarie Morton Clin head of Div of Surgery East Lancashire Hospitals NHS TrustJayne Norbury Matron - Emergency Care Southport and Ormskirk Hospitals NHS TrustMalcolm Ridgeway GP and PEC member Blackburn with Darwen Teaching PCTPam Smith Head of Service, Community Services, Warrington PCT

WarringtonLynda Taylor Comm Service Mgr/lead district nursing Central and Eastern Cheshire PCTAllan Tronconi AHP Manager Trafford Healthcare NHS TrustTraffordSteve Ward GP Medical Director of Central Lancs PCT Central Lancs PCTMarion Waters A&E clinician Countess of Chester Hospital NHS

Foundation Trust

77

Appendix 11Membership of Reference Group

NHS Review Urgent Care Reference Group

Name Specialty Trust

Jenny Allen Comm. Service Mgr/Lead district visitor Central and Eastern Cheshire PCTFrancis Andrews Consultant A&E Southport and Ormskirk Hospitals NHS TrustSteve Atherton Consultant Physician Southport and Ormskirk Hospitals NHS TrustBen Atkins GDP Salford Deborah Atkinson Nurse Consultant for Emergency Stockport NHS Foundation TrustPaul Bannister Cons. Physician in Rehab Central Manchester and Manchester Children’s

Hospitals NHS TrustJackie Bene Ass Med Dir Acute Medicine Bolton Hospitals NHS TrustKausk Chatterjee Consultant Physician Countess of Chester Hospital NHS

Foundation TrustNilanjan Chaudhuri Senior SPR in surgery The Cardiothoracic Centre Liverpool NHS TrustJill cochan Lecturer/Practioner Royal Liverpool Children's NHS TrustJohn David Snr Div Nurse for Emergency Care (A&E) The Royal Liverpool and Broadgreen University

Hospitals NHS TrustJulie Dickens) Therapy Mgr, Medica/Surgical TeamDavid Duffy Nurse Cons. Suicide and Self Harm Greater Manchester West Mental Health NHS

Foundation TrustBill Forsyth PEC Chair/GP in Northwich Central & Eastern Cheshire PCTGavin Francis Cons. in Acute Medicine Wirral University Teaching Hospital

Foundation TrustCathy Gadd Lead Nurse, A&E Mid Cheshire Hospitals TrustJonathan Goodall ICU Salford Royal NHS Foundation TrustJohn Hollingsworth Clinical Dir - Emerg Services Aintree University Hospitals NHS

Foundation TrustNigel Horsfield Physician East Lancashire Hospitals NHS TrustMark James Cons. A&E dept Lancashire Teaching Hospitals NHS

Foundation TrustLynn Jones Therapy Mgr (OT) The Royal Liverpool and Broadgreen University

Hospitals NHS TrustPaul Knowles Cons & Clin. lead Emerg Medicine Mid Cheshire Hospitals TrustMo Kumar GP - Wigan Ashton, Leigh & Wigan PCTHarriet Lewis Pharmacist Trafford Alison Lynch Nurse Consultant Bolton Hospitals NHS TrustShyamal Mukherjee Lead of urgent care Wirral University Teaching Hospital

Foundation TrustNigel Randall Cons & Div Dir of Nursing, Clin Support Blackpool, Fylde and Wyre Hospitals NHS TrustAnne Robinson Consultant A&E North Cheshire Hospitals NHS TrustMick Rothwell Consultant Anaesthetist East Cheshire Hospital NHS TrustYogi Sharma Tameside & Glossop Acute Services NHS TrustAnton Sinniah Pennine Acute Hospitals NHS TrustPatrick Strong Consultant Radiologist Bolton Hospitals NHS TrustNick Tierney Cons & Clin Dir. Anaes & Pain Pennine Acute Hospitals NHS TrustMartin Vernon University Hospital of South Manchester NHS

Foundation TrustAndy Wardman Consultant Physician Wrightington, Wigan & Leigh NHS TrustMarion Waters A&E clinician Countess of Chester Hospital NHS

Foundation TrustKim Williams Lead Nurse A&E Royal Liverpool Children's NHS TrustPeter Williams Consultant Physician The Royal Liverpool and Broadgreen University

Hospitals NHS Trust

Appendix 11 Consultations with other groups, stakeholders;Submissions received and presentations given

1. Presentation to Unplanned Care Board Cheshire West PCT

2. Presentation to Clinical Directors, & Countess of Chester Hospital and local GPs.

3. Presentation and involvement in Primary Care Development Day with Cheshire West PCT, involving community matrons, district nurses and rapid response staff. The scenarios were used to test out responses nowand in the future

4. Presentation to the North West Stroke Network due in May 2008.

Our Health Our Care Our Say, The new direction forcommunity services, published January 2006, 17, 18, 21,22, 23 25, 26 27 28

NHS Our Future Interim Report Summary, October 2007.The clinical vision of a reformed NHS JMCC and NHSConfederation published 2007.

The reorganisation of the Emergency Services Englandpublished by the College of Emergency Medicine and theBritish Association of Emergency Medicine, July 2007.

Direction of travel for Urgent Care: A discussion document,Department of Health, October 2006.

Our Future health secured : A review of NHS funding andperformance, published by the King’s Fund 2007, DerekWinless, John Appleby, Antony Harrison, Dashing Patel.

Building on the best: Choice, responsiveness and equity inthe NHS- response document. 9.12.2003www.dh.gov.uk/en/Consultations/Responsestoconsultations/DH_4068391

Your Health Your Care Your Say Research Report January2006 published by Opinion Leader Research and preparedfor the DOH.

Reforming Emergency Care, published by the Department ofHealth, published 2007.

The Exemplar programme for integrated OOH care,Evaluation report Executive Summary, November 2004,published by the School of Medicine and the School ofNursing & Midwifery, University of Southampton.

Raising Standards for Patients, New Partnerships in OOHCare, November 2000.

An Independent Review of GP OOH services in England,commissioned by the Department of Health.

RCGP Summary Paper 2000/2008


Safety and Effectiveness of Nurse Telephone Consultation inOOH Primary Care Randomised Control Trial, Val Latimer, etal, BMJ 1998; 317:1054-1059.

Effective introduction of Integrated OOH Care in England:An observational study by Val Latimer et al, BMJ 2005; 331:81-84.

Briefing paper on OOH services, medicines supply and therole of community pharmacy. April 2005.PSNC.

Delivering urgent access to medicines outside normal hours-MMNetwork. www.mmnetwork.nhs.uk/med-out-home.php

Better Care for the Severely Injured: A Joint Report from theRoyal College of Surgeons of England and the BritishOrthopaedic Association, July 2000.

Delivering High Quality Surgical Services for the Future: AConsultation document from the Royal College of Surgeonsof England Reconfiguration Working Party, March 2006.

NCEPOD Report 2007: Trauma – Who Cares? Mortalitybenefit of transfer to Level 1 vs. Level 2 Trauma Centres forHead Injured Patients, K John McConnell, Craig DNewguard, Richard J Mullins, Melanie Arthur and Jerris RHedges, HSR Help Services Research 40: 2 (April 2005)page 435-454.

Injuries Severity Score Analysis by region, date from TraumaAudit Research Network, Omar Bouamra

Trend in Head Injury Outcome from 1989-2003

Effects of Neurosurgical care an observational study, Patel,O Bouamra, M Woodford, A T King, D W Yates, F E Leckyon behalf of the Trauma Audit and Research Network,Lancet 2005: 355: 1538-1544.

Report of the Greater Manchester Traumatic Brain InjuryAudit Group, September 2005, Audit Group Chair, FionaLecky.

78

79

Decide to Admit versus Admit to Decide : Working Togetherto Improve Unscheduled Care in NHS Scotland : Report ofthe National Conference for Unplanned Care for MedicalConditions, August 2004, published by the ScottishExecutive.

Delivering Quality and Value, published by the NHS Institutefor Innovation and Improvement. This focused on fractureneck of femur, primary hip and knee replacements, acutestroke, caesarean section and short stay emergency care,published by the Department of Health in 2005

NHS Institute Analysis of unnecessary emergencyadmissions and alternatives, published on NHS Networks2007 at www.networks.nhs.uk

How do they do it , HMO Control, HMO Control Costs,American College of Physicians website, November 1995ACP Observer.

Modernisation Assessment Summary Report 2005 & 2006

Delivering Design for Life focusing on effective, efficient,sustainable improvements at www.mliah.wales.nhs.uk

Challenges for the provision of Health Services to seniorpeople in Oldham in 21st Century, J Vassalo, B Lewis, 2007.

ASSET = Anglo-Scandinavian Study of Early Thrombolysis(2) Results at 6 months Lancet 1990 May19;335(8699):1175-8

National Sentinel Stroke Audit, Phase 1 organisational audit2006,Phase 2 clinical audit 2006Report for England, Wales and Northern Ireland 2007. RoyalCollege of Physicians, Clinical Evaluation and Effectivenessunit

Discharge from hospital: process and practice. Health andSocial Care Joint Unit and Change Agents Team January2003

Improving discharge; intensive care at home. Case study 10.p32 Achieving Timely “simple discharge from Hospital. Atoolkit for the multidisciplinary team. DOH Aug 2004.

Urgent care pathways for older people with complex needsDOH Nov 2007

Discharge from hospital: process and practice. Health andSocial care joint unit and change agents’ team. Jan 2003

Garbsen H, Windspoll R, Johnson R. Intermediate Care at acommunity hospital as an alternative to prolonged generalhospital care for elderly patients: a randomised controlledtrial. BMC Public health 2/5/07, 7, 68

(Campbell H, Karnon J, Dowie R. Cost analysis of a hospitalat home initiative using discrete event simulation. J.HealthServ Res Policy Vol 6 no1 Jan 2001)

CoastJ, Richards SH, Peters TJ, Gunnell DJ, Darlow MA,Pounsford J.Hospital at home or acute care? A costminimisation analysis. BMJ 1998; 316:1802-1806)

Centre for the Advancement of Interprofessional Education.Creating an Interprofessional Workforce: An Education andTraining Framework for Health and Social Care.

M. Lakhani, A. Fernandes and G. Archard, (2007). RCGPPosition statement on urgent care, March 2007

Academy of Medical Royal Colleges, (2007). Acute Healthcare services- report of a working party, September 2007.(section 1.13)

Urgent Care Pathways for Older People with ComplexNeeds

Discharge from hospital: process and practice. Health andSocial Care Joint Unit and Change Agents Team January2003

Improving discharge; intensive care at home. Case study 10.p32 Achieving Timely “simple discharge from Hospital. Atoolkit for the multidisciplinary team. DOH Aug 2004.

Garbsen H, Winds poll R, Johnson R. Intermediate Care ata community hospital as an alternative to prolonged generalhospital care for elderly patients: a randomised controlledtrial. BMC Public health 2/5/07, 7, 6

Discharge from hospital: process and practice. Health andSocial care joint unit and change agents’ team. Jan 2003

Campbell H, Karnon J, Dowie R. Cost analysis of a hospitalat home initiative using discrete event simulation. J.HealthServ Res Policy Vol 6 no1 Jan 2001

CoastJ, Richards SH, Peters TJ, Gunnell DJ, Darlow MA,Pounsford J.Hospital at home or acute care? A costminimisation analysis. BMJ 1998; 316:1802-1806

Close J,Halter M, Elrick A, Brain G, Swift C. Falls in the olderpopulation: a pilot study to assess those attended by theLondon Ambulance service but not taken to EmergencyMedicine Age and Ageing 2002; 31:488-9

The acutely or critically sick or injured child in the districtgeneral hospital - a team response, (The Tanner Report)DH2006,http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_062668

181

EXECUTIVE SUMMARY

This report sets out the main findings and recommendations of the multi-professional working group that

was set up to examine the provision of planned care services across the North West.

The group’s aim was to identify the changes needed to improve overall care provision and ultimately the

health of our population. This review has identified strengths and examples of innovative best practice,

but also unearthed inherent weaknesses and problems and these are set out in the report.

The group has now developed a strategic vision for thefuture that builds on the progress made to-date and also,aims to eliminate obstacles and barriers to change so thateveryone in the North West gets the same high standard ofcare, no matter where they are treated.

This report sets out a comprehensive pathway of care basedon current policy, which reflects both clinicians’ andpatients’ priorities and is centred on the provision of a worldclass service.

It shows that planned care can be provided by a number ofdifferent providers, including the NHS, the independentsector, social enterprises and the voluntary sector; and in arange of settings, including district hospitals, specialistcentres, GP practices, capture assess and treat services(CATS) and independent sector treatment centres (ISTCs).The group concludes that care should be given by theprovider best able to meet the needs of the patient,irrespective of whether they are an NHS organisation, as

long as the values of the NHS are maintained.

Having considered all these issues facing the North West’sdiverse population, the following actions have beenrecommended to improve planned care services:

• All planned care episodes should be booked at a time which is convenient for both the patient and reasonable for the service

• They should take place within a reasonable time from referral

• Planned care should represent agreed best practice

• Patients should if they wish be able to choose their provider of care

• All planned interventions should follow evidence based guidelines so that all patients receive the same standardof care and treatments irrespective of where they live or who provides care

Our main priority has been to develop a genericpathway that reflects our vision and aims, whichcan be applied to all episodes of planned care

❛❜


Planned CarePathway Group

• Quality outcomes should be pre determined and measured and reported for patients to see if they wish to

• Care should be provided by the most appropriate person, in the most appropriate place

• Services should be centred around the needs of the patient

Our main priority has been to develop a generic pathwaythat reflects our vision and aims, which can be applied to allepisodes of planned care.

The feasibility of the proposed pathway and solutions hasbeen assessed internally by the group and externally as partof the ongoing engagement with the public. Scheduledscenario planning exercises will also give us the chance tovalidate and test out our assumptions.

The report identifies possible barriers to implementing thevision and explains how these can be overcome.

National policy and operational drivers affecting caredelivery have been fully considered. The difficulty ofovercoming the problems and addressing the challenges inplanned care, particularly ensuring accessibility, fairness andquality care, can not be under-estimated.

However, the group is convinced, that theserecommendations provide a sound, realistic and achievablemodel to deliver first class planned care service across theNorth West.

IntroductionIt is a huge ask to get a group of practising clinicians tocarry out a piece of work which involved not only reviewingthe current service across the North West, but also defininghow high quality planned care should look. However, wehave been overwhelmed by the support and enthusiasmamongst clinicians for this task.

For once, it seems that we are giving the people whoprovide the service the chance to say how they feel it shouldlook. Perhaps, more importantly, we have asked the peoplewho have day to day contact with patients, relatives andcarers, and who listen to their views and comments aboutwhat is important to them.

The members of the group brought insight and expertisefrom a wide range of specialties and disciplines withinvarious healthcare professions and education. There werecommissioners and providers, giving us healthy tensionsand wide ranging ideas and opinions. We did not have muchtime, but we feel we made the most of the limited sessionsto come up with some basics. We hope that local healtheconomies will take what we have produced and build on itto offer seamless, accessible, high quality services to theirpatients.

Planned care covers a vast range of services, and it wasimpossible to do justice to each and every speciality acrossprimary, secondary, tertiary and community care. We triedinstead to look at the basic common themes across allservices and areas and to set out what we felt were theimportant things to get right, such as the use of high quality,evidence based care all the time, everywhere. We talk a lotabout pathways and these are vital. They should beseamless and patient centred, as well as adhering to thehighest clinical standards.

82

We have not come up with anything new or radical, or anygroundbreaking ideas that no-one has thought of before. Wemake no apologies for this. If health economies all look atour ideas and translate them into services, and if wesucceed in getting even these basics right, then we will trulyhave ‘world class’ health services in the North West.

Overview of the NHS in the North WestNHS North West has a population of over seven millionpeople and oversees a budget of over £11 billion across itsorganisations. These are:

• 24 PCTs

• 29 acute care trusts, including 11 foundation trusts

• 11 mental health trusts including the learning disability trust at Calderstones

• One ambulance trust

Average spend per head on healthcare in the North Westequates to £1,357 per year.

Across the North West, there are approximately 1,285 GPpractices providing 4,392 GPs This equates to 63.8 GPs per100,000 population. Currently, the North West is consideredto be ‘under doctored’ in several areas and procurement ofmore primary care capacity is underway.

There are 7,219,728 patients registered with a GP and theaverage list size is 1,644. However, lack of GPs in underdoctored areas has resulted in higher than average list sizesin many areas.

We employ 210,483 staff and contribute 11% of GDP to theregion.

Planned care in the North West

Planned care within the North West is delivered by bothtraditional and non traditional NHS providers.

An overview of the planned care activities carried out withinthe NHS in the North West is given below with the ‘latest’waiting time data.

Planned care activity 2006/07numbers

Total number of patients treated in hospitals 1,631,524Elective/planned appointments 844,884Inpatients 308,192Day cases 515,181Total number of patients waiting for treatment 103,412Number of GP consultations 38,000,000

Across the North West considerable improvement has beenmade in reducing long waits as the chart below illustrates.

Financial Year

Inpatient Waiting List

WeeksWaited

Num

ber

of

Pat

ient

s W

aitin

g

However this fails to reflect the true picture of low waitingtimes in some areas and high in others. The tables belowillustrate the current position for both inpatients andoutpatients across the North West.

Case for ChangeAs part of the review, the group looked at the case forchange and why things need to improve.

In the North West we have a large, vibrant and diverseregion covering the largest geographical area of any ofEngland’s 10 strategic health authorities. Our population ofmore than seven million includes inner city and rural areas,with wide range of needs reflecting considerable socialinequality. We are living longer but we are not living better.The following illustrates some of the issues facing the NorthWest:

• Seventh worst region for low income

• 16% of people are on benefits

• Over one quarter of children live in poverty


• Over six out of 10 adults are overweight or obese


• Highest level of drug misuse in England

• Highest level of long term mental health problems in England

Inequalities begin from birth and although we are makingprogress, the North West is trailing behind as the secondworst region in England for life expectancy. Life expectancyfor females in England is 81.1 years, but in the North West itis 79.9 years. Life expectancy for males in England is 76.9years, but in the North West it is 75.4 years. In their 2007annual health check, the Healthcare Commission identifiedunder-achievement in:

83

• Reducing MRSA bacteraemia rates

• National Sentinel Audit of stroke care

• Access, including two week rapid access chest pain service, four hour A&E waits, thrombolysis, and waiting time for diagnostic tests

Patient needs and wants

The group has welcomed the impact of the consultationstaking place nationally and locally as part of the Darzideliberation events. The findings of these events have beenincluded in the group’s discussions and there is generalsupport for:

• Faster processes and response times

• Clear and consistent pathways for people with specific conditions

• Choice about where to have care and the need for morecommunity settings

• Personalisation and tailoring services to the individual

In particular, the group acknowledged and agreed with thepublic’s prime concern that all patients should receive thesame standard of care no matter where they live or whichclinician provides that care.

Morbidity rates/inequalities

An assessment of the 2007 England health profileemphasises the current north/south divide, with the poorerhealth in the north of England in comparison to the south.

Key characteristics and comparisons of health in the NorthWest are highlighted below.

ENGLAND NORTH% WEST %

Children in poverty 21.3 25.3Adults who smoke 26 27.4Binge drinking 18.2 23Life expectancy at birth (male) 76.9 75.4Life expectancy at birth (female) 81.1 79.9Deaths from smoking easr 234.4 279.3Early deaths - circulatory easr 90.5 108.6

- cancer easr 119 132.6Feeling in poor health 7.8 9.6

Source: health profile 2007

The group acknowledges that the full commitment of thewider health economy and societal changes would benecessary to eradicate these inequalities.

Current provision of care issues

Other reasons for change include:

• Inequitable access to care across the region, particularlyin relation to diagnostics

• Quality of practice and care is variable

• Insufficient emphasis on prevention of ill health

Good Quality Care and theBarriers to Implementation

The group looked at what makes good quality care andwhat prevents this happening now.

Key principles

The shared expectation of the group is to develop a modelof planned health care that ensures timely, high class care,delivered as locally as appropriate and in line with consistentprotocols and outcomes.

Its vision is of a more holistic approach to care, ensuringprompt attention and more convenient appointments withinthe overall 18 week referral to treatment framework. Thiswould mean less disruption to daily life, faster access totreatment, less time spent in hospital and more servicesprovided in community settings. A key pre-requisite of thevision is the need for patients to be better informed andinvolved in decisions about their care.

Aware of the overlap with other clinical pathway groups, thisgroup has defined planned care as being “any plannedinteractions between a patient and health professional forwhich, the date and time has been predetermined”.

What is good quality planned care?

Planned care should be pathway based, using evidencebased pathways that are systematically audited so that allour patients receive the same high quality of care, whereverthat care is provided.

Access into the pathway should be at any point which isappropriate for the individual patient and may varydepending upon where the patient initially presents. Doctorsin A&E and out of hours services should have access to thesame pathways, avoiding the need to pass patientsbackwards and forwards to GPs to gain access to referral ordiagnostic tests. This should be facilitated by timely accessto electronic care records.

Doctors in primary care, in and out of hours, and in A&Edepartments should be able to access appropriatediagnostic tests for their patients without the need to resortto secondary care referral simply to obtain an investigation.

Access to all stages of the patient pathway should be timelyand, as far as possible, convenient for the patient.

In primary care this means all patients should be able tobook a routine appointment with a healthcare professionalwithin 48 hours, that these appointments may be arrangedin advance to allow patients to plan around work and familycommitments, and that routine primary care is availableoutside of normal working hours.

Patients should not have to ‘jump through hoops’ to bookthese appointments. Hundreds of patients trying to getthrough to practices by phone at 8.30am is unacceptable.Booking should not be restrictive and IT solutions such asinternet booking should be considered.

Service availability and particularly extended hours servicesshould be tailored to the specific needs of the localcatchment population. This local flexibility and authority isparticularly necessary to reflect the diverse needs of ourarea.

We recognise, however, that modern, effective primary careis far more than just GP services. Nurse practitioners,

practice and community nurses, pharmacists, mental healthprofessionals, alcohol workers and many more provide highquality, integrated modern primary care. To extend hourswithout extending provision of these services would limit theeffectiveness of the care offered to patients who accessservices outside normal working hours. It is clear, therefore,that extended opening hours cannot be achieved withoutadequate resources and we must, at all costs, avoidattempting to do this by diluting the daytime service as thiswould only divert services away from those in greatest needsuch as the elderly, the ill and the very young.

Patients are not being empowered to get involved in theirown care to the level they could and should be. Patientsshould be meaningfully involved in decision makingregarding their care.

Patients should realise that, increasingly, a doctor may notbe the most appropriate person to deliver their care at everyconsultation and that triage systems may be used effectivelyto direct them to an appropriate healthcare professional.Patients should be fully informed about the range ofhealthcare professionals who make up a health care teamand educated to use these professionals appropriately sothat skill mix can be increased and care can be increasinglycost effective while remaining high quality. Effectiveeducation programmes within primary and secondary careare needed to help implement the pathway.

Access to diagnostic services should be timely, adhering tothe principles of a total ‘18 week pathway’ regardless ofwhere the diagnostic test is accessed. Reporting should berapid and communication of results should be electronic,allowing both primary and secondary care clinicians toaccess test results easily and quickly to avoid duplication ofinvestigations.

Patients should be told their test results as quickly aspossible to avoid unnecessary anxiety.

Simple, ‘high volume’ investigations should be providedwithin a primary care environment to allow convenientaccess for patients. This is especially important for thosepatients who require regular investigative tests.

Where possible, and clinically appropriate, diagnosticinvestigations and their results should be available as part ofa ‘one stop’ assessment service. In particular, where theepisode of care relates to a suspected cancer diagnosisthen anxiety should be minimised by having investigationsand results available at the first outpatient consultation.

For patients whose pathway requires referral for specialistopinion or for surgery, this referral should be made inconsultation with the patient. Ideally all referrals should bemade electronically using the choose and book system,allowing patients to exercise choice of time and location ofappointments if required.

The group recognises that public views on the importance ofchoice varies, with the majority placing a higher priority oncomprehensive and consistently high quality care. However,it is felt that choice itself is an important driver to make thechanges needed.

The importance of the availability of an effective choose andbook IT system that allows providers to populate thedirectory with information sensitive to the locally agreedclinical pathways is stressed.

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That will require providers to be sensitive to locally agreedpathways when populating choose and book and fordirectories of services to be much clearer than they are atthe moment.

Once the maximum ‘18 week’ pathway becomes the normin all areas, it will be important for referrers to recognise itand adapt their behaviour accordingly. It must be assumedthat patients will move very quickly from referral to surgeryand therefore patients should only be referred for routinesurgery in optimum condition. Patients with concomitant co-morbidity, including obesity, should have their conditionoptimised before referral to allow best outcomes fromsurgery and to reduce complications.

In summary:

• All planned care episodes should be booked at a time that is convenient for the patient and reasonable for the service

• They should be within a reasonable time from referral

• Planned care should represent agreed best practice

• Patients should if they wish be able to choose their provider of care

• All planned interventions should follow evidence based guidelines so that all patients receive the same standardof care and treatments, no matter where they live or who provides care.

• Quality outcomes should be pre determined and measured and reported for patients to see if they wish to

• Care should be provided by the most appropriate person, in the most appropriate place

• Services should be centred around the needs of the patient

Our main priority has been to develop a generic pathwaythat reflects our vision and aims and which can be appliedto all episodes of planned care.

Identified below are the key stages of a generic pathwaywith the associate qualitative standards required to deliveryuniformly first class care. It is recognised that these willneed to be tailored for individual use.

Barriers to implementation

The barriers to implementing these changes now are :

• Information technology

A major barrier to effective care is current concernconcerning patient confidentiality and overall security.

The group fully supports the development of secureelectronic record, which has multi level access and which isshared across all health providers. The current barriers tothis relate to data public security concerns. Healthprofessionals must be assured that personal patient data issecure and access to records is controlled via robust audittrails. Personal data is sacrosanct and concerns underminepatient confidence. The group feels that shared access isultimately for the greater good of the patient. It is imperativethat current technical and operational issues are resolved.

• Payment by results (PBR)PBR is not a payment for a result, but a payment for atransaction irrespective of whether the transaction resultedin a positive clinical outcome. The group agrees that fundingmechanisms can be a useful driver to change behaviour and

stimulate innovation. The group supports a payment for anactivity mechanism, but this must be a payment that can be‘split’ for differing elements and rewards providers fordelivering quality outcomes. A system for remuneratingquality outcomes is currently being piloted in the North Westand the group welcomes the approach and would supportspeedy roll out when appropriate.

The clinical pathways designed by the clinicians must besupported by the contracting and financial framework. Boldinnovative pathways need to be underpinned and supportedby the financial system, not hindered by it.

• Human barriersThe group feels strongly that human resistance is a keybarrier to delivering the pathway vision. Our ideal is that allhealth professionals should work to protocols and guidelinesof care and processes that support these models and areevidenced on best practice for the majority of patients.Deviation from these should be the exception not the norm,but protocols should not stifle innovation. It is felt that thislevel of human resistance will continue and that effectivestrategies to manage change will be required.

• Sectoral barriersIncreased cross sectoral working is essential. There shouldbe no barriers between primary and secondary care and thegroup feels that a model which encourages total healthbudgets on a geographical basis should be developed. Jointcommissioning for health and social care should be thenorm. However, the major threat to this is the potential forhealth budgets to be compromised by the funding systemsin place for local authorities. Functional relationships need tobe further strengthened between primary and secondarycare and need to go beyond information sharing and an ITsystem to create a service of teamwork andinterdependency.

• Patient expectations Managing patient expectations is seen as a major barrier toimplementing the pathway. Our view is that healthcareshould be provided by the most appropriate person in themost appropriate location. This does not always mean by adoctor in a hospital or health centre. We need to educateour patients on a much more vigorous footing to understandthat they do not always need to see a doctor or go intohospital, and that other health professional or self care maybe more appropriate.

• Planned care services not available 24/7Current uneven and inadequate access to planned careservices out of normal hours is highlighted as a barrier tothe pathway. Access to routine care needs to be improvedto allow more cost effective use of resources, particularlyinfrastructure and equipment to increase availability, meetdemand and reflect patient aspirations and wishes. Thisapproach should encompass primary, secondary and tertiarycare.

The group feels strongly that extended hours requirementand increased accessibility proposals need to reflect thespecific local circumstances of the individual PCTs. One sizecan not fit all given the geographical diversity of our region.Flexibility and sufficient resources are the key to re-engineering the service provided. Patients should bemeaningfully involved in decision making regarding thisaspect of their care.

• Continuous service reorganisationsThe series of structural reorganisations has resulted in some

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inertia in the system and some reluctance to deliver majorchange and innovation. It is felt strongly that the currentsystem is still not the best, but any changes to reflect theneed to move to total budgets on a geographical basisshould be planned in advance and delivered in a way thatdoes not impact upon patient care.

The scale and frequency of service re-organisation hasreduced available management time and delayed decisionmaking. The group feels that a period of consolidation isrequired so that improvements can be implemented in asuitable environment.

• Unscheduled careA major barrier to the delivery of planned care is therequirement to provide unscheduled care on the same site,as by definition this is often urgent and takes priority. Thegroup has acknowledged the inter-relationship betweenurgent care and planned care, which is frequently deliveredby the same personnel. The importance of effective capacityand demand planning has been stressed and the need forequitable distribution of resources to both areas. The grouprecommends that definitive separation of planned/urgentcare beds would be the ideal, but concedes that flexibilitywill be required in certain circumstances.

• Transition careThe group feels that current transitional care arrangementsfail to meet pathway aspirations. For both children to adultand mainstream to elderly pathways, robust transitionalarrangements based on the clinical conditions of the patientrather than generic disease age profiles are needed.

Implications for Delivery ModelsChanges to the delivery of healthcare, in terms of whodelivers it, where and how, will be essential for the pathwayto be delivered

• Physical infrastructure

The group acknowledges the increased investment ininfrastructure that has taken place and the improvements tofacilities and accessibility for patients. It also recognises thatfor a streamlined patient focused pathway to be delivered,each local area must reassess where different elements ofthat pathway should be delivered. This is particularlyrelevant given regional variations in service availability andquality and will undoubtedly result in discussions aboutlocations and numbers of DGH, primary care, outpatientsand tertiary centres. The group has no firm view on howthese decisions should be made, except that they should bebased on clinical evidence, supported by patients, and notbe unreasonably affected by political requirements. Thegroup feels that more pragmatic discussions need to takeplace with the public on these issues and we must not shyaway from being clear about services and buildings whichare unsafe and unaffordable. Local priorities and needsshould be the drivers underpinning the infrastructureconfiguration.

Similarly car parking and public transport issues will beaffected by our pathway and clear consideration as to howto meet patients’ needs, but in an eco friendly way isrequired.

• Cooperation not competition

The recent policies in regarding plurality of service provisionhave resulted in some major changes to how healthcare isdelivered and practised but has also alienated a number ofhealth professionals. The group feels that healthcare shouldbe provided by the provider best able to meet the specified

need and that that provider could be IS or NHS based, aslong as the values of the NHS were paramount and thatprovider “cherry picking” of services is minimised.

Implications for Enablers• QualityThe pathways of care should be linked to a programme thatrewards quality. Quality should be the prime consideration atall stages of the pathway and the group believes that if thebarriers between sectors were abolished, quality could bethe underpinning principle for commissioning rather thancost. Key enablers commission for quality by PCTs and allorganisations, ensuring quality through robust clinicalgovernance arrangements.

• InformationInformation needs to be timely, accessible to all sectors thathave a ‘legitimate’ need and meet the needs of the serviceand patients. Real time data entry is required and all healthprofessional must play their part in the care record and dataentry to support a live record. Information reports need to bepro-active and not reactive. Data security concerns need tobe addressed urgently.

• InnovationThe pathway should be subject to continual innovation andreview, with mechanisms that allow clinicians and managersto share best practice. It is crucial that the aim to produceconsistent care should not stifle innovation through the useof over rigid pathways.

• Workforce, education and trainingThe key to delivering our vision is the availability of asuitably trained, motivated and skilled workforce.

Organisations that embrace education and training areassociated with better quality outcomes. The grouprecommends board level responsibility for training from theDH level downwards and that CEO’s within the SHA shouldhave training goals as part of their annual objectives.

Each service contract should include an explicit trainingelement that identifies how much should be allocated totraining and the expected outcomes. This way, thedevelopment of the future workforce will be protected.

Rather than sacrificed at the altar of service delivery targets.A adequate, broad based, generic, modular training isneeded to develop a flexible workforce that will evolve in linewith the changing needs of the NHS.

Currently numbers entering training at undergraduate andvarious postgraduate levels are determined, by and large,centrally. The trusts that actually recruit and employ staffonce they are trained need to be more involved in workforceplanning.

• Accountability - local and national Accountability should be at PCT level, overseen by the SHAwith a requirement to adhere to national principles andpolicy outlines. Commissioners should ensure that adequatelines of communication are available to enable the view ofpatients to underpin the decision making process. Ideally,politicisation of health care decision making should beavoided.

• Leadership within organisationsConfidence in leadership is an important enabler. Pathwaystakeholders need assurance that the vision can and will beimplemented. The vision needs to be clinically led at a locallevel.

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Local clinical leaders must be able to continue to influenceservice developments and policy. The group fully supportsthe drive to develop leadership, particularly clinical leaders.as they are the key to delivering change.

It must be recognised that leaders should be appointedbased on their suitability for the role and ability to do it andnot solely because of their professional background.

RecommendationsThe main recommendations of the planned careclinical pathway group are:

• Clinical care pathways should underpin the delivery of planned care

• Care should be given by the provider best able to meet the needs of the patient, irrespective of whether it is an NHS organisation, as long as NHS values are maintained

• All planned care should achieve the following key standards:

• Booked at a time convenient for patient and service

• The patient should be treated as soon as possible

• The treatment should represent agreed best practice

• Patients should be able to choose their provider

• All treatment should be evidence based

• All patients should receive the same standard of care

• Quality outcomes should be pre-determined and measured

• Clinical care pathways should underpin the delivery of planned care

• Accessibility and service availability outside normal hours should be determined locally, reflecting individual catchment population needs and demands

• The payment mechanism should reward the delivery of quality outcomes

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APPENDIX 1Membership of clinical pathway group

NAME REVIEW ROLE DESIGNATION ORGANISATION

Rob Barnett Member GP & Secretary to the LMC Liverpool PCT

Mark Bennett Member Nurse Consultant - Medicine Southport & Ormskirk

Hospitals NHS Trust

Jennifer Butterworth SHA Lead Associate Director of Performance NHS Northwest

Leena Chagla Member Clinical Director for Surgery Southport & Ormskirk

Hospitals NHS Trust

John Curtis Member Consultant Radiologist & Aintree University Hospitals

Regional Adviser NHS Foundation Trust

Ann Dingle Member Consultant ENT Surgeon Mid Cheshire Hospitals Trust

Amanda Doyle Chair PEC Chair/Medical Director Blackpool PCT

Hilary Fewins Member Consultant Radiologist The Cardiothoracic Centre

Liverpool NHS Trust

John Hodgson Member PEC Chair Western Cheshire PCT

Jim Johnson Member Consultant Surgeon North Cheshire Hospitals NHS Trust

Andrew Jones Member Consultant Urologist East Lancashire Hospitals NHS Trust

and North Western Deanery

Martin Kelly Member Associate Postgraduate Dental Dean North Western Deanery

Raj Kumar Member GP Warrington Warrington PCT

Carol Makin Deputy Chair Consultant Colorectal Surgeon Wirral University Teaching Hospital

Foundation Trust

Jane Muller Member Deputy Director of Public Health Cumbria PCT

Alan Nye Member GP Oldham PCT

Caroline Sanders Member Nurse Consultant - Royal Liverpool Children’s NHS Trust

Urology & Sexual Health

Bill Tamkin Member PBC Chair Manchester PCT

(South Manchester consortium)

Lesley Walters Member Head of Physiotherapy Services Lancashire Teaching Hospitals

NHS Foundation Trust

Rita Robertson Member Director Public Health & Strategy Warrington PCT

George Hurst SHA Lead Assistant Director NHS North West

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EXECUTIVE SUMMARYMental health problems are both a high financial anddistress burden on individuals and society. In addition to thedirect impact of symptoms on the individual, there arepotentially significant impacts such as loss of work andproductive roles, loss of independence, physical and mentalhealth interactions, impacts on families and carers.

Many of these are preventable or can be reduced andminimised by appropriate help and interventions, and thiscan often be provided by health and social care systems.Many others require input from a variety of sourcesincluding, but not limited to, education, training, employers,housing providers and the media.

Mental health problems cannot simply be addressed byreactive health interventions or by specialist mental healthservices. Commissioning needs to be based on a wholesystem approach, including joint health and social carecommissioning plans, with defined outputs and service userdefined outcomes

Having skilled staff in place in any setting where people withmental health problems may appear, such as physicalhealthcare settings, will help. This means moving away froma ‘one size fits all’ approach and creating a workforce withthe right skills to deal with those who access them.

Mental health problems are common and therefore basicskills should be common, with stepped care and steppedskills for more complex needs.

There is clear evidence that mental health systems candeliver excellent quality but this is not consistent enough.Effective use of care pathways is the best way of improvingquality in a meaningful way. Service users and their qualityof life must be at the core of service design and delivery.Their views plus the views of carers, the public and staffmust shape the outcome measures of care pathways.

The above are true at national level and as the main body ofthe report demonstrates these are significant issues for theNorth West. The region has a historical pattern of underinvestment in adult mental health services, which the NorthWest SHA and commissioners across the region are startingto address. Comparative funding in other areas of mentalhealth is less well benchmarked.

When compared to other regions, the North Westconsistently comes out above average in terms of rates ofmental health problems and resulting disabilities and risks,and on many issues ranks in the worst two or three regionsout of 10. There is a wealth of benchmarked informationincluding the views of thousands of North West serviceusers in the Healthcare Commission service user survey.Staff and service users, carers and the public are frustratedthat data is widely available from a host of sources such asthe NHS, local authorities, regulatory bodies such asHealthcare Commission and Monitor, groups such as thePicker Institute, MIND, Age Concern, Alzheimer DiseaseSociety and many others. This data is based on staff, user,carer and public views and experiences, but it is notroutinely analysed and used to support and enhance

There is no healthwithout mental health❛

❜


Mental HealthClinical Pathway Group

commissioning and service provision. Too much effortappears to go into collecting more and more data, leading toconsultation fatigue.

There is considerable good practice within the North Westand we include a range of examples in the appendices -many of these are of national quality and some are worldclass. This shows that the North West can deliver. Theavailable data shows that there is still too great a variation instandards which can not simply be explained by differentlevels of need or investment. Healthcare Commission dataand national healthcheck results show that the North Westhas too many services still below the excellent level onquality or the good level on use of resources.

The region has no mental health/learning disability servicesranked as excellent both for quality and use of resourcesand we still have some below good on either. Evidence onprimary care and third sector delivered mental healthservices is less accessible and robust, but again paints avery mixed picture. This report cannot cover all of the issuesunderpinning this, nor can it cover all of the various carepathways required in adequate detail. Mental health andwell being are not the sole prerogative of mental health carepathways or of healthcare and we have shared many cross-cutting themes with the other clinical pathway groups in theregion. To demonstrate the range of potential care pathwaysbut do one in sufficient detail to illustrate the main points,this group has chosen to work up an example dementiapathway. We have collaborated with the other mental healthclinical pathway groups in England, who are each usingdifferent examples so that a good spread can be seen byreferring to each regional report.

The key messages in this report are that the North Westcannot improve overall health and wellbeing without properlyaddressing mental health. There is considerable variationacross the region even in areas with similar characteristicsor in geographical proximity. When commissioners andproviders get it right we have clear evidence of excellence.Many of the steps required to deliver excellence across theNorth West are about better commissioning across wholesystems, with providers being encouraged and rewarded fordelivering quality rather than needing above nationalweighted levels of investment in healthcare for the region.We have identified 20 recommendations to help enable anddeliver the required further improvements and these are setout in the Enablers section.

The overall picture in the North West is therefore mixed,starting from a low base but improving and with realexamples of excellence across the region.

IntroductionThe group looked in detail at mental health and wellbeing in four key areas in the review:

• Older people

• People with learning disability

• People with substance misuse including alcohol misuse

• Working age adults

We recognise that these areas are not mutually exclusive.

In line with the approach being taken nationally, child andadolescent mental health (CAMHS) was reviewed by thechildren’s clinical pathway group. In collaboration with theother seven groups, multiple interface issues and crosscutting themes were identified and these will be expandedon later in the report.The group had 23 members nominated by organisations

throughout the region. The final membership was chosen toreflect the range of clinical expertise, professions andgeography within the North West. The group engaged withwider stakeholders through a series of events and processesoutlined in the Appendix 1.

NHS North West had already established a Mental HealthCommission for the North West prior to the start of the OurNHS Our Future review. This group, together with thecommission, have committed to and are working in closeliaison and have complementary approaches to eachgroup’s activity.

We quickly concluded that there were multiple potentialpathways within and across these areas and in a report thissize each would barely get a paragraph. We, therefore,focused on one specific pathway to allow us to demonstratethe system thoroughly and we chose dementia. Nationally,the mental health groups have worked collaboratively toensure that their reports focus on a variety of pathways andthese reports should be read alongside this one.

In identifying the basic principles that the group would workto, it was considered that the current concepts of primarycare, secondary care, social care third sector care, physicalhealthcare and mental healthcare could inhibit thinking onthe way services are delivered. This could lead to theinappropriate use of time and resources rather than addvalue. As a result the report instead uses the followingterms:

• Office based - Where service user visits the health or social care staff in the provider based office or clinic

• Outreach care - Where the staff member goes to see the person in their own home or in other setting away from the providers base or facilities

• 24 hour professional care - This may be through staff providing 24 hour continuous care in a person’s home but currently, more typically, includes residential, and nursing home care and inpatient care, from short admissions to long term specialist settings such as forensic units

The type of interventions offered and staff skills required willbe based on stepped care approaches, so the commonestlevel will be generalist skills and most interactions will besuccessfully undertaken at this level. There will then be arange of steps (regardless of name/type of providerorganisation) right through to at the most specialised levelsuch as in a high secure forensic hospital. This supports andenhances a whole systems thinking and approach. Carepathways will be simpler for service users and carers to useand to move up or down the steps as their needs change.This will be more effective and efficient in reducing contactswith people who can not help and improving satisfaction byproviding a clear understanding to all of what can bereasonably expected.

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Good practice example

Merseycare NHS Trust’s criminal justice liaison team hasproduced protocols and care pathways for mental healthcollaboration with courts, police and probabtion serviceswithin court services. These include service levelagreements and operational specifications to ensureeffective access to mental health services.

Interface issuesMental health does not exist in isolation. We all havephysical and mental health and the majority of people willhave problems with their physical or mental health or both inthe course of a lifetime. Having serious physical problemsincreases the risk of getting mental health problems andvice versa. Health, social and lifestyle problems interact incomplex ways. Sometimes these issues require specialistintervention, but in many cases appropriate generalistinterventions are better. Increased skills in mental healthassessment and interventions or joint physical andpsychological services working together in general servicescan successfully reduce reliance on specialist services.

Education, training and supervision issuesPublic education and training to promote positive mentalhealth is important, but difficult to do if there are mixedmessages. Training for health and social care staff and otherfrontline access points, including the emergency services,must recognise that people will present with problems inmultiple settings despite systems wanting a single point ofaccess. It is therefore essential that all people who work insuch settings have enough generalist mental health trainingto identify, assist, intervene or signpost people to any furtherhelp they may need.

New research and evidence changes best practice. Ongoingtraining appropriate to the person’s role must beincorporated into their personal development plans. Theymust know what they can do, but also what their limitationsare. Stepped care will involve many steps. It is crucial thatservice users and carers know what should be expected atany particular step and that the person they are seeing hasthe relevant, up to date skills, no matter which organisationthey work for. More complex care may typically be providedby a team who work closely together and between themhave the necessary up to date skills.

The group explicitly recognised that simply designingservices to react when people reach breakdown in theirability to function will not work into the future. The evidenceis that this does not work well now. The demographicevidence is that rates of a range of mental health conditionswill continue to rise if nothing different is done, not leastbecause many conditions, especially depression anddementia, are more common as the population profile ages.

The group identified four issues:

Societal issuesThese include society’s expectations for health andwellbeing and its response to changing age profiles withgreater ethnic and cultural variation. There is considerableevidence that, as a society, we are becoming more riskaverse. Increasingly, we are turning words describing normalhealthy experiences such as stress, loss and distress intopathological terms, meaning they are seen as harmful orabnormal. It is important for everyone to be given theopportunity to develop emotional resilience and this requiresexposure to the full range of human emotions. We all havestrengths and weaknesses and we can learn to maximiseour strengths in ways that do not diminish others. Ideallythis is best learned in childhood, when support should be atits maximum and we have the greatest ability to learn. Risksare part of everyday life. Each person needs to learn whatare the boundaries for them and this is best done withguidance and support, not as part of adult therapy, whenthings have already gone wrong. This will not prevent mentalillness as causes of mental illness are varied, but it willreduce unnecessary additional risk factors and help peopleto be in a stronger position to cope with physical or mentalhealth problems as they progress through life. Stigma andsocial exclusion towards those with mental health problemsfurther compounds the problem. We recognise and agreethat each individual needs to be responsible for maximisingtheir own health and wellbeing, including their mental health,but everyone will need help to do this at some point in theirlives.

Access issues If a problem does arise, good access is not only aboutseeing someone quickly. All the evidence on earlyintervention shows that it is appropriate access to someonewho can provide meaningful help that is the critical factor.Seeing the wrong person introduces delays, increasescommunication risks, increases the risk of the individual justgiving up and increases the sense of the problem being toobig. The person who can help does not have to be aspecialist or even a health and social care staff member.Many people with early common mental health problems arebest helped by support and advice from people they trustwithin their own social network. There is evidence thatpeople with more severe mental health problems who areknown to respond to early intervention are not beingidentified at the point where they seek help or when aproblem becomes apparent. There is evidence thataccessing help on prevention is difficult. Not least becauseadvice on prevention changes and can seem contradictory.People with low self esteem, poor educational attainment,limited social networks, low cultural expectations orattitudes towards mental well being or poor Englishlanguage skills are at highest risk of not getting access toclear prevention messages and someone who can helpthem to navigate the system.

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A project by Michele Bering, consultant nurse at Cheshire& Wirral Partnership NHS Foundation Trust, to improveingand supporting access to mainstream health and socialcare services in Cheshire and Wirral for people withlearning disabililties was shortlisted by HSJ in theReducing Health Inequality category. Her work, run inpartnership with the three PCTs and two local authorities,also secured Health Foundation funding to extend theproject to mental health


Ashton, Leigh & Wigan PCT provide cognitive behaviouraltherapy to patients with respiratory problems suffering withanxiety and depression. The respiratory nurse specialist,who has been trained to deliver CBT with clinicalsupervision, is able to integrate cognitive behaviouralinterventions into respiratory care packages. The aim is toenhance the quality of life of this group of patients andreduce the burden on general and specialist services.

Case for ChangeMental illness is common with one in six people having atreatable problem at any one time. According to the AuditCommission and others, approximately one in four GPconsultations have a primary mental health component. Addto that the needs of people with learning disabilities andpeople with substance misuse, including alcohol, and it isapparent that the areas covered by the mental health clinicalpathway group impact on all facets of life in North Westhence “there is no health without mental health”. Thissection of the report looks at some of the issues facing ushere in the North West, what needs to change and why.

Profile of the North West

• The region covers 14,000 sq km

• Population of 6.8 million

• Four fifths of the region is rural, but most people live in the urban areas; 60% are in the two core conurbations of Greater Manchester and Merseyside

• Equivalent to Scotland or Sweden in terms of populationand expenditure

• Academic attainment is poor compared to rest of the UK, with 3% more having no qualifications and nearly 3% less educated to degree level

• Those in full-time employment is nearly 2% less than the national average

Health inequalities in the North West

• A child born in Manchester will have 10 years less to live than a child born in Kensington and Chelsea in London

• We have some of the worst binge drinking in England

• A third of children under 11 will be obese by 2010

• We have the second highest rate for diabetes in England

• More people in the North West will die of alcohol-relatedillnesses than anywhere else in England

• We have the highest rate of deaths from smoking in England

• The percentage of people economically inactive because of disability or permanent sickness is 7.75% (8.24% in Cheshire and Merseyside) compared to 5.30% for England. This includes the second highest rate for incapacity benefit due to mental health and behavioural disorders

• 2% to 3% more people in the North West consider that their health is not good or have a limiting long term illness compared to the English average

• The North West comes in the worst performing two or three regions in terms of highest suicide and self injury rates in England

Mental HealthPeople with mental health, learning disability and substancemisuse, including alcohol problems, are higher risk groupsfor premature death and long term health disabilities Withouteffective help and treatment these risks are increased.

The quality of life through physical illness is known to beclosely related to mental health problems. People withmental health problems are up to twice as likely to reportexperiencing a long term illness or disability; over two thirdsof people with a persistent mental health problem also havea long term physical complaint. Levels of suicide and selfharm remain unacceptably high. This creates additional

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distress and suffering for the service user, and staff. It alsodamages the whole North West economy and thereforeimpacts on every resident in the region.

Mental health services across the North West, like servicesacross the country, are ‘patchy’. There are some excellentexamples of good service but these are not consistentacross the region. Investment in services for people withmental health problems vary significantly. Compared to 152PCTs nationally, those in the North West were ranked onexpenditure as seen in the table below:

Number of Number of PCTs in PCTs in top 20 bottom 20

nationally nationally

Mental health 1 6

Substance misuse 2 3

Dementia 1 4

Other mental health 1 7

Learning disability 1 2

Since the creation of the North West SHA in 2006/7 and thereconfiguration of PCTs there has been a conscious effort toaddress this with some signs of progress. However thecurrent position still reflects the negative impact of thehistoric under investment. Without a coordinated effort,there is a risk that the North West will not bridge the gapand that avoidable long term suffering, premature death,emotional physical and financial losses and inequalities willpersist compared to the rest of England.

Commissioners putting more money into mental health willnot in itself dramatically improve things. There is evidence ofvariation in the North West that is independent of levels ofspending, with many examples of national and world classservices, but also many that are below standard. There isconsiderable evidence on quality across specialist NHSprovider trusts from the Healthcare Commission reports thatallow benchmarking with the North West and nationally. Thisis a public source of data but there is little evidence of itbeing systematically analysed and used at regional orcommissioning level. There is very little public benchmarkingdata on quality in primary care or third sector providersacross the North West at present. This is a clear gap forcommissioners, service users, carers and the public inunderstanding and being empowered to make decisionsabout use of resources. There is a paucity of outcome dataavailable to the public about provider services.

We will now look at the information that is available andwhat that tells us about current service provision.

The NHSHere are some facts and figures about the NHS in the NorthWest.

• The NHS spends over £11 billion a year on services in the region. This equates to 11% of the region’s GDP and of this, just over £1.5 billion is spent on mental health services (12.1%), meaning the North West has the second lowest expenditure on mental health per head of population in England

• Nationally the percentage spent on mental health is 12.2% and in the North West 16 of the 24 PCTs fund at levels lower than the national average, with a range of 9.4% to 17%, through this may be due to lead purchasing roles

neighbourliness, all of which are known to contribute tomental wellbeing.

For additional and more detailed information on theevidence for increased mental health need in the North Westplease see the appendices.

DiversityThe North West has a rich variety of cultures and traditions.The group is not in a position to determine what might bethe specific local issues for individual communities acrossthe North West as this would require more detailed localwork. As noted previously, there are significant variationsbetween urban and rural community settings, between andwithin the historical counties and the newer local authorityboundaries. Diversity encompasses a wide range of viewsand value sets. Over time some stay unchanged, somechange quickly, some slowly, so service provision needs todynamically anticipate and respond to such variation.

One aspect of diversity is in relation to black and minorityethnic communities and individuals. In particular, it remainsa concern that some census groups are significantly overrepresented amongst those detained under the MentalHealth Act 1983. Standardized data for the North West isnot available in the Count Me In report published inDecember 2007 by the Healthcare Commission, but the datatables suggest that trends are similar to the national Englishpattern.

National data show that:• British white, Indian and Pakistani groups have below

average number of people detained

• Black or black British groups have the highest rates of those detained.

• The highest detention rate is in the black Caribbean group

• The fastest growing group is the other white group

Detention under the Mental Health Act is not and should notbe the only diversity issue that needs addressing, but thesefigures are stark and commissioners and providers ofservices need to reflect on them.

What is Good Quality Care and WhatPrevents this Happening Now?

There is variability in the provision of mental health servicesacross the North West region as well as excellent examplesof good service, some of which are highlighted in this report,but which are not consistent across the region. We look atsome of the reasons why.

Barriers to good quality care include:

• Mental ill health still marginalised despite being a high financial as well as distress burden on society and individuals

• Insufficient good data/evidence to support decision making around health and social improvements

• A recognised under-development of joint mental health commissioning of health and social care across the whole system

• A lack of attention to service user satisfaction data and other service user outcome measures

• The need for investment in the current workforce to develop and meet the needs of future service models

• The need for efficient, effective and seamless care pathways including stepped care

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• The North West spends 67% of investment on services provided by NHS organisations, compared to 77% in London, with the remainder spent predominantly with non statutory and social care providers

• There are 38 NHS trusts in the region. These are:29 acute and specialist trusts

Nine mental health trusts

One ambulance service

• An increasing number are Foundation Trusts, including currently four mental health foundation trusts. There are 24 PCTs in the region and 42 local authorities, of which four are unitary authorities

• The NHS in the North West employs over 184,200 (152,200 fte) staff, of which more than 92,500(78,800 fte) are professionally qualified clinical staff. For identified mental health/learning disability trusts there are 15,754 (15,141 fte) staff. In comparison to the rest ofEngland the proportion of staff per 100,000 population (2005/06) is as follows:

North England EnglandWest Average Highest

Medical 16.9 19 31.7

The North West has the lowest proportion of consultants in England

Nursing 126.2 120.7 155.7

Clinical psychology 6.8 7.9 12.6

The North West had a high proportion of assistants compared to other regions

Therapists 10.4 12.3 15.8

The North West stands out as having a low level of provision in view of its high need level

Counsellors & 13.7 13.2 27.6psychotherapists

The North West has the second lowest proportion of psychotherapist/counselling psychotherapists in England

• It is estimated that there may be more than 9,000 professionally qualified staff working in non-NHS healthcare settings, including the third sector, of which mental health staff will make up a significant proportion. Large numbers of social care and other non healthcare workers support those with mental health problems and learning disabilities outside of the healthcare sector

Key IndicatorsThe following indicators were derived from the ‘Indicationsof Public Health in the English Regions, 7: Mental Health’,Association of Public Health Observatories (APHO), 2006 atwww.apho.org.uk

They show that North West has significant risk andprotective factors and determinants. Unemployment is thethird highest in England. The percentage of those withmental health problems in employment is 20%, comparedwith a national average of 24.7%, placing the North Westsecond worst. The best is the South East where the figure is33%. Information on other risk factors also place the NorthWest amongst the worst performing in England. Theseinclude diet (consumption of five or more fruit or vegetablesper day) where the region was ranked eigth and forrecommended levels of physical activity at ninth. The northof England, including the North West, scored well in terms ofsocial factors such as social support, social networks and

• Stigma and discrimination within society continue to prevent proper engagement in mental health and emotional wellbeing and promotion

Underpinning this is the principle that mental health servicesprovide safe, sound and supportive approaches which areperson centered.

The group has identified the following overall top threepriorities as central to achieving quality of care:

• Equity of access

• Standards of care

• User and carer engagement in all aspects of pathway including defining outcomes

The group focused on four key areas and identifiedstandards that would represent quality care, as shownbelow:

People with learning disability

• Recognising the needs of those with learning disabilitiesacross all services and ensuring equity of access

• Ensuring the appropriateness of standards of care, with a clear definition of threshold for access to learning disability services and supported by a workforce across all services that is fit for purpose

• Ensuring equity of access to carer and family support and recognising the impact that caring has on people who may themselves be older adults

People with substance misuse including alcoholmisuse

• Giving consistent health messages, with a particular focus on young people and prevention

• Ensuring effective coordination between services, recognising the wide range of actual and potential partnerships

• Achieving joint working across all services (not just health) to reduce the risk of exclusion and ensure early and opportunistic interventions

Older people

• Ensuring services are needs led and age appropriate,not age led

• Supporting the needs of both formal and informal carersto ensure a high quality of care

• Creating a wider knowledge of the mental health needs of older people alongside their physical needs, whilst recognising the interplay of these needs

Working age adults

• Ensuring needs based services that meet the mental health and physical health needs of service users, appropriate to the severity of the need

• Recognising the need for mental health wellbeing and mental health promotion for the general population

• Ensuring equity of access through joined up services with clear ownership of pathways

Clinical PathwayThe group has developed a generic clinical pathway thatcan support the multiple care pathways across the fourareas. It has used dementia to illustrate this below:

In this case the term ‘resilient’ is used rather then ‘healthy’as it describes the person as coping with the normalfluctuations of life, experiencing the full range of emotionsfrom joy to distress, but without any significant additionalrisks over the normal for the whole population. A resilientperson may still have underlying health issues, such adisability or long term condition.

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The Central Manchester primary care mental health teamhas been recognised nationally for its work in an area withprofound social problems and with clients who have inaddition suffered severe trauma, with seriousconsequences for their mental health. The team works toaddress the social as well as the health problems of theirservice users, and has established good links with thevoluntary sector.

It uses a stepped care service model that provides aframework for delivering mental health care based oncomplexity of need. In establishing this, the team placedemphasis on the value of remaining responsive to patientsand has managed to avoid developing waiting lists byworking closely with GPs who in turn have increased theircommitment to providing enhanced in-house care forpatients presenting with common mental health problems.Additionally, developing close working relationships with anumber of voluntary and community sector services hasenhanced the service in terms of responsiveness, qualityof service provision and capacity to manage referrals.


Imagine, Mainstream Project, Liverpool, is a voluntarysector organisation that supports people with mentalhealth problems to access mainstream provision ratherthan just mental health services. Each staff member(‘bridge builder’) is responsible for making links with aparticular sector and supporting clients in these areas.Sectors include education and training, employment,visual and performing arts, sports and leisure,volunteering, and faith, spirituality and culturalcommunities. Clients define their own support needs andaspirations, and the client and bridge builder identifypossible opportunities to meet these in mainstreamsettings. Bridge builders offer dedicated tailored supportto clients as they develop the confidence to usemainstream services an further develop social networks.

Example Model of Whole Population

resilient

becomingvulnerable

experiencingharm

fall throughnet

preventativereferral

toresilient

maintainedin service

makingprogress

non-resilient

in service

non-resilientnot in

service

crisisreferral

at risknot in

service

In the model the stopcocks currently turn in either direction,so the aim of pathway development would be to reduce flowto the non-resilient boxes and speed flow towards recoverythrough maintained in service to resilient.

Too many referrals are still of the crisis referral type. Suchreferrals indicate a system failure and need review so thatpathways overcome obstacles to effective access. There is aneed to promote planned booked referrals that suit theindividual and mean they access the best person or team todeliver assessment and effective evidence based help.

The group considered clinical pathways for each of the keyareas and will take these forward, but it was agreed toconsider a single specific pathway in more detail, namelydementia.

The pathway needs to consider interactions with otherspecific pathways, such as those related to intercurrent co-morbidities, and onwards to other pathways, like those forend of life care. Under each step below, we give examplesbut do not itemise all of the possibilities that exist. In movingto implementation, the group recommends that for eachstep there will be links to dynamic evidence basedinterventions such as through NICE guidelines or tools suchas Map of Medicine.

Health promotion and prevention

The person is resilient and the focus is to maintain thatposition while providing a framework for early recognition ofsymptoms.

• Memory should be part of general health promotion

• Make cognitive assessment part of routine health screening using tools such as 6-CIT and ‘clock drawing’

• Raise public awareness as part of mental health promotion

• Signpost to information and services

• Concomitant or predisposing factors including; hypertension, alcohol misuse, smoking, heart disease, diabetes, hypercholesterolemia and obesity must be managed

• Build up neuronal reserves through cognitive, physical, social and leisure activity

Problem presented - first access to services

The person is vulnerable and at risk but not within specialistservices. They may return to resilience or remain at risk offurther problems or experiencing harm.

• Screen for preventable functional, organic or social causes

• Give accurate information and advice

• Promote positive self help and choice

• Refer to appropriate pathways, including next step as appropriate

• Carry out initial screening and assessment

Suspected diagnosis of dementia

Evidence suggestive of a diagnosis of dementia.

People should access specialist assessment via clear,efficient and accessible local routes such as:

• Referral to older people’s liaison services for inpatients in acute general hospitals

• Direct referral to rapid access memory assessment clinic

• Memory clinic providing one stop holistic service with multi-disciplinary health and social care services

If there is no confirmed diagnosis, refer back to first stepwith clear care plan and information including a firm date forreassessment.

Confirmed diagnosis of dementia (low contact)

Person may be able to return to resilience or be maintainedin service.

With patient (and carers where possible) develop a personalmanagement plan that includes:

• Social, physiological and psychological care and treatment

• Named practitioner as primary contact (with identified deputy in case of absence)

• Minimum contact every six months

• Information and guidance, including planning for the future, and consideration of advanced directive if not already done at earlier step

• Support, information and guidance for carers/relatives

• Continue with low contact

Confirmed diagnosis (high contact)

Person is non-resilient and is either within or outside ofservice, but with potential need for crisis intervention.

Patient condition requires high contact with the aim beingable to stay at home with support from specialist servicesand crisis intervention. The assessment of complex health,social and care needs should consider::

• Risk to themselves or to others

• Increasing personal care needs

• Heightened carer needs

• Developing more intensive management plans

Confirmed diagnosis (intensive contact).

Person is non-resilient in service. They will need:

• 24 hour care, which may be delivered in the person’s own home. May also be provided on a respite basis in other settings, such as residential/nursing homecare or in acute hospital or mental health inpatient services

• Continuing specialist mental health support, but emphasis moves to generalist care

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Confirmed diagnosis (end of life care).

Person is non-resilient in service. Their care should include:

• Liaison with specialist palliative care and end of life teams. Apply appropriate pathways

• Care guided by advanced directive, including role of advocates

• Support of carers, including bereavement care

Estimates by a range of organisations including AgeConcern, Alzheimer Disease Society and National AuditOffice suggest up to half the people over 65 with dementiaare never given a diagnosis and figures may be worse forthe smaller numbers of people who develop dementiabefore the age of 65.

This can be due to lack of public awareness, societal issues,poor awareness or training in detection amongst those towhom the problem may present, and they will present inmany different settings not just in GP office. Other factorscould include misguided paternalistic ideas aboutwithholding a “label” or feeling hopeless so no point ingiving diagnosis. Similar reasons were given for notdiagnosing cancer some decades ago and are nowthoroughly discredited in that field; they should be equallydiscredited in dementia. There may be perverse incentivesnot to make use a diagnosis as it can be used as a vehicleto exclude such as in the residential home sector.

Early access at the right time to people with the right skillsto identify the problem and begin advice, furtherassessment, interventions and support for the service userand carers is essential. This will be office based. We haveseen some interesting examples from around the world ofadvice sheets created for staff who might be the first pointof access, such as those in emergency services and localauthorities so they can put the service user in touch with theright person to make an early diagnosis, and think this hasmerit.

Once the person accesses the health and social caresystem it is essential that they are given up to date accurateinformation and the best up to date assessments andinterventions are offered. Map of Medicine is being madeelectronically available to all clinicians with the North WestSHA in 2008 and some group members looked to see how itcould fit into the dementia care pathway. They concludedthat it would be a clinical decision aid to assist within a carepathway rather than a care pathway itself. The advantage ofthis is that it links the person to current evidence at eachstep, including external sources such as NICE guidelines,and will be kept up to date. The disadvantage is that itcurrently only covers the evidence for some interventionsand only part of the pathway. Dementia is one of manypathways considered within Map of Medicine, includingmany mental health related ones, but dementia is the onlyone the group had time to consider in depth.

There is increasing evidence, such as the National AuditOffice, that early diagnosis and early appropriateintervention can improve the quality of life for the individualconcerned and overall reduce the burden of disability on theindividual, the family, the carers and society. It is essentialthat such services are available and further expanded tocope with the anticipated growth in cases of dementia. Thehuman, societal and financial costs are already high, but willincrease further if effective action is not taken.

Most people with dementia and most carers wish for themto remain in their own homes and maintain an independentlifestyle for as long as possible. Office based and outreach

services should therefore be geared to support thesechoices. Interventions should be proportionate and evidencebased on a stepped care model. Such interventions willinvolve a mixture of physical, psychological and socialapproaches. Access to all types of intervention should bebased on need and should not involve exclusion bydiagnosis. In other words many people with dementia willhave other physical health problems and services shouldtreat the whole person according to their needs. Frontlinestaff such as modern community matrons need the skills todeal with people who have dementia alongside theirphysical health problems. For many but not all people withdementia, there will come a time or times when they needsome form of residential 24 hour care either on temporary orlong term basis. There should be a range of availablestepped care types of residential facility addressing needwithout perverse incentives and without exclusion basedpurely on diagnostic category. Current differential paymentschemes based on either, health or social care are a majorissue in creating barriers to effective care delivery.

People with dementia have a variable prognosis, butincreasing evidence is that living for 10 to 20 years withdementia is not unusual. This necessitates effective caresystems that are responsive to changes in need and arecapable of supporting the person with dementia and theircarers. Systems must review that changing need andprovide effective appropriate advice and interventions.These systems must also support and address the needs ofcarers and be responsive to changes in their needs.

It is a fact that eventually all people die, including thosepeople with dementia. Current estimates are that around12% of deaths in England occur in people with dementia(but not necessarily due directly to the dementia). This figurewill rise as life expectancy rises, leading to an increasingprevalence of dementia. Planning for end of life byindividuals and their families is therefore important, includingthe use of advance directives before dementia removes theperson’s capacity to make decisions. Those planning ordelivering end of life services need to ensure that they aresensitive to the needs of people with dementia and theircarers and that no barriers based purely on diagnosis arecreated in accessing such services.

Implications for Delivery ModelsIn looking at the pathways for the key work areas, the groupidentified some of the main issues that will impact onservice delivery:

• People have needs that require services to deliver social, mental health and physical advice and interventions

• Risk groups - those people identified as vulnerable, those people who fall outside of mainstream services and those people with needs, who choose not to, or find it difficult to access services

• The need to support people to look after their own mental health wellbeing through upstream prevention and health promotion

• The need for early and rapid diagnosis/formulation for those with a disorder and normalisation away from health/social care for those without a disorder

• Smooth transfer across stepped care as needed

• Removing unnecessary steps such as referring on to services or practitioners who add no value

• Recovery focus based on pragmatic understanding of best potential outcomes

• Requires appropriate up to date skills at each point of

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access and at each step

• The need for service user involvement in decision making and defining outcomes

What is also evident is that the point of access for mentalhealth can be broader than just healthcare, with peoplepresenting to a wide range of professionals and services. Thiswill often be in office based settings or in 24 hour care settingsincluding medical/surgical wards or local authority and thirdsector services but may also be to emergency outreachservices such as paramedics, police, fire services.

Ideally initial care, especially of early cognitive impairment, willbe office based to enhance normality and mainstream access.With a progressive condition such as dementia, more complexcare packages with increasing proportion of outreachinterventions will be required over time. Currently, a highproportion of people move from intensive home based care to24 hour care either on a temporary basis such as respite, or ona permanent basis. The overall aim of a care pathway wouldbe to effectively support service user and carers to keep theservice user at home. In a good care pathway, the decision totransfer someone to 24 hour care would not be driven by lackof adequate community resources.

Implications for EnablersThe group has set out in the main body of the report and theappendices the rationale for change and given a workedexample of a mental health care pathway. The greatvariation still existing in the North West and between theNorth West and the majority of England in terms of needand effective inputs has also been noted and the higher thanaverage level of poor outcomes and outcome proxyindicators have been highlighted. The report has coveredgood examples supported and underpinned by evidencethat shows the North West can be innovative and deliverhigh quality. This section sets out these key enablers thatwill be needed to improve overall mental health and wellbeing in the North West over the coming years and, in turn,the key recommendations.

QualityWithout a clear and explicit focus on quality, the overallNorth West picture will not substantially improve.

Key indicators for quality are outcome measures that havethe engagement and confidence of service users, carers,staff and the public.

There are very few of these at present, but we believe thatone test of world class commissioning will be the delivery ofsuch agreed outcomes.

In the short term we believe that there are a large number ofproxy measures that can help to determine quality. Theseinclude but are not limited to data on predicted need versusidentified need. We recommend:

• World class commissioning in mental health requires commissioners to use existing data to establish current levels of need and any gap between predicted need andservice delivery and publish this data annually

• This data becomes a key part of benchmarking of commissioning

• There is investment in developing outcome indicators and in developing ways of publishing outcome data to empower service users, carers and the public as well asto assist commissioners and providers in further improving services

InformationIn addition our work has demonstrated that whilst muchinformation on mental health is collected, little is readilyavailable in usable, benchmarked, accessible and publicisedformats. It is a paradox that at a time when service providersand commissioners are frustrated by the amount of timediverted from clinical service delivery to form filling, there wassuch difficulty in obtaining information on quality, need anddelivery. As noted in the main body of the report, for somesectors there was virtually no accessible data on quality at all.We further recommend:

• To achieve world class commissioning that benchmarked information should be made available on quality and value for money for all provider contracts, regardless of sector, and that health and social care commissioners develop such data sets and publish them jointly

• The development of mental health information systems that support clinical pathway service delivery and intelligent analysis of data to underpin transparent and equitable commissioning decisions should be a priority for the North West

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There are many examples of good practice in relation topublic mental health and wellbeing, these include:

• Improving the mental health of people with a physical health problem, long term condition or disability, as seen in Manchester PCT

• Combating stigma and discrimination, especially amongst young people, workplaces and the media,as seen in St Helens and Halton PCT

• Support to employment for people with existing mental health problems through individual placement support, and for those in existing employment with mental health problems through vocational advice in primary care and the workplace, as seen in Bury and East Lancashire PCTs

• Stepped care within primary care need increased investment in steps 1 and 2 for upstream prevention, especially in non-pharmacological interventions. Examples of this are social interventions through socialprescribing schemes on the Fylde coast/Blackpool, Sefton, Stockport and increased access to psychological therapies in Salford. This is being rolled out through increased investment; but attention needs to be paid to addressing health inequalities

• Suicide prevention within secondary mental health services. This is increasingly significant amongst providers of services to older people across the system, especially primary care and also requires local partnerships across sectors. A good example is the Greater Manchester Suicide Prevention partnership, Greater Manchester West Mental Health Foundation NHS Trust

For more information visithttp//www.northwest.csip.org.uk/work/mental-health-

and-social-wellbeing/mental-health-promotion.html

IncentivesIn common with the other regions in England, we haveidentified that the lack of an agreed contracting currency is amajor gap. We recognise that payment by results in thephysical health sector has its limitations, but it givescommissioners and providers a set of benchmarks againstwhich to set contracts. We believe that quality andoutcomes for people with mental health problems in theNorth West will only significantly improve if providers arerewarded and incentivised to deliver quality and value formoney rather than lowest cost. We recommend:

• The North West campaigns for a currency and tariff system for mental health in England that supports care pathways through a stepped care approach, incentivises quality and promotes meaningful outcomes for service users through a recovery focus

• In mental health services, as in any aspect of life, things can go wrong. We endorse the findings of the National Patient Safety Agency and others that say organisationsthat encourage the reporting of errors and incidents are the safest and most likely to promote good quality by having a low threshold for action and enhanced learning. It is therefore important that any contract system does not create any perverse incentives such asreduced incident reporting

• Commissioners ensure in contracts that all providers areadhering to incident reporting systems and proactively learning, proportionate to the types of service they provide not the nature of the employing organisation

• That if a contract provider is not reporting quality, including incidents, or is showing persistent and seriousquality issues on external benchmarking, then commissioners would be required to explain to the public the reason for continuing the contract with that provider

InnovationThe group came across many examples of innovation duringits work. Some examples of particular projects are listed inthe main body and appendices. Many of these are aboutservice redesign to deliver services better such as earlyintervention in psychoses and other such services. Mentalhealth services are correctly seen as generally lowtechnology with a large emphasis on face to face delivery ofservices. This appears to have created a perception thattechnological innovation is not relevant to mental health. Infact, mental health service commissioning and provisionrequires accurate timely and extensive information.

There is clear evidence that increased use of technology,such as 24 hour access to electronic care plans and clinicalinformation on a need to know basis, has improved decisionmaking especially in emergency or transfer situations. Thereis evidence that systems such as electronic prescribing,electronic clinical decision support advice, text messagereminders of treatment appointments, some forms ofelectronic information sharing including some public healthmessages, like those on suicide prevention and some formsof electronic therapy are improving efficiency, effectivenessand safety.

It appeared to the group that such initiatives and regionalcoordination of innovation in mental health are currentlyfragmented and patchy, with too little being made of theopportunities that exist and the complexity acting as aperverse incentive against promoting innovation. We furtherrecommend:

• The North West invests in a system to support, collate and disseminate best practice in mental health innovation including those using improved technology, and that this system has access and/or influence on research and development within the region so that innovators are rewarded and encouraged for adding quality and value.

WorkforceWe have also noted that most mental healthcare now and inthe foreseeable future will involve significant face to facecontact. We have noted that at present too many contactstake place with people without the skills and up to datetraining to deliver the most effective service and haveillustrated this in our dementia pathway example. Werecommend:

• Commissioners evaluate from their published predicted mental health work, as it develops, including what levels of mental health need will present or be a significant co-morbidity factor in which pathways. They must ensure that providers offering those pathways or parts of them have staff with evidenced relevant skills that are maintained and up to date proportionate to the level and type of mental health need they will encounter

• There must be a mixture of some general skills for all frontline practitioners, but with a stepped care approach to more specialised needs, including access to appropriate specialists. For example access to an appropriate level of liaison psychiatry services would back up the generalist knowledge of clinical staff working in an acute physical health care provider service

• Commissioners, providers and regulators work together to ensure that contracts encourage high quality staff into mental health commissioning and provision, reduce the risks of burnout and harm to staff, support them in developing and maintaining skills to deliver improved outcomes and reduce the stigma on mental health by promoting the field as an important career choice for the long term well being of the country

• Training and continuing professional development are driven by service design based on effective care pathways to address local need, rather than existing skill sets driving service design

AccountabilityPromoting and maintaining mental health and wellbeingrequires whole community approaches and cannot simplybe left to health and social care organisations. It is importantthat within local communities there is joint accountabilitybetween health and social care for identifying the mentalhealth needs of that community, including elected leadersand representatives, in promoting mental health and wellbeing. In particular, it is important that these reports identifyareas or groups with high need, such as the examples in thedementia pathway, and identify what will be done to addressthis. Examples include, but are not limited to, estates inurban areas with high socio-economic deprivation, isolatedrural communities without good public transport.

It is important that health and social care commissionersjointly work to support and promote the development ofcare pathways based on local need and that they areexplicit about what they are commissioning, includingexpected outcomes and how these are determined. Werecommend:

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• Locally accountable structures and organisations, including local authorities, should ensure that community initiatives such as Local Area Agreements demonstrate active commitment to improving mental health and well being in the local communities

• Local and national regulators and regulatory reports apply the same quality and governance standards to services based on service being delivered, not the type or sector of provider providing those services

• The good work already underway to promote service user and carer involvement is further developed as part of accountability structures, including helping commissioners and providers to develop meaningful measures for outcomes

• Accountability for addressing discrimination specifically includes accountable bodies demonstrating action against stigma towards those with mental health problems

Leadership within organisationsWe found that there are many good examples of leadershipwithin and across organisations, but this was patchy andcan be strengthened. We recommend:

• Strategic leadership across health and social care should be strengthened as it is critical for joint commissioning of mental health services

• Management systems in health and social care commissioning and provider organisations must value, promote and encourage input from those with clinical, as well as non-clinical, expertise and backgrounds

• Service user and carer inputs and representation must be embedded in key decision making groups within health and social care commissioners and organisations, including recruitment at all levels, service design and delivery and the development of outcome measures

ConclusionIn conclusion, we believe that there are significantopportunities within the North West to turn it from one of theworst performing regions for mental health to be amongstthe best. There is skill, commitment, quality and innovationwithin the North West, but it is currently patchy, fragmentedand has difficulty in attracting support to develop and sharesuccess. We recognise that the North West SHA, throughthis group and the mental health commission, has clearlyindicated a desire to learn and advance Mental HealthCommission and delivery within the region. We welcome theNorth West and national commitment to the clinical pathwaygroups and believe they will go forward as a criticalcomponent of the implementation phase of the review. Theimplementation phase, if properly supported, can delivereffective and efficient care pathways to promote andmaintain mental health and wellbeing in the North West.

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Appendix 1Clinical Pathway Groups Meetings and Engagement Events

The clinical pathway group met on five occasions, the first time on October 30, 2007 and the final meeting for this stage washeld on February 12, 2008

Attendance at meetings averaged at 60% of membership.

Members also engaged others through their organisational and professional networks. Other engagement events included:

• Two national deliberative events, September and January, with 240 patients, public and staff

• 12 focus groups with patients, public and staff, using the Picker Institute, exploring their experience and understanding of the NHS

• Engaging with more than 30 patient and public involvement leads from across the region in October

• Engaging with clinical leaders and networks through a clinical congress attended by over 300 clinicians from across the region in November

• Engaging with over 100 NHS stakeholders from local authorities and social services, voluntary sector and independent sector in December

• Conducting a regional staff stakeholder event in January, engaging with over 200 NHS staff from across all NHS organisations in the North West

Appendix 2Supporting Evidence/Good Practice Examples

The following are additional examples of good practice in the North West that have been made known to the group. Theseare not meant to reflect the full range of good practice that is occurring in the region, but simply to share those whichbecame known to the group. The group has heard anecdotally about multiple other examples, but has found it difficult tocheck and collate these within the time and resources available. One of the group’s recommendations for enablers is theneed to have a regional website for collating and disseminating best practice examples. We hope that these examples willencourage others to come forward and share best practice examples

5 Boroughs Partnership NHS Trust

The trust has developed a strategic outline case for antenatal and perinatal mental health services for up to one year after birth, in line with NICE guidance. This includes a vision for parental mental health services, for parents with mental health issues and complex needs, to support them and their children, including services to support the primary relationship between the parent and child, up to two years of age.

Greater Manchester West Mental Health NHS Foundation Trust

The trust has a developed a trust wide psychosocial interventions strategy linked to its adult forensic mental health services

Creation of nurse led physical healthcare team on the inpatient unit to improve is working to enhance the standards of physical healthcare in collaboration with the mental heath teams.

The trust has published an user led recovery model, used in education of junior doctors and in early intervention services training.

The EDIT, early detection team evolved out of EDIE research trial. The local team has led on a national report regarding early detection – view it at www.earlydetection.csip.org.uk. The service won the North West (Trusttech) award for innovation info service improvements.

Central Manchester and Manchester Children’s University Hospitals NHS Trust

The Manchester specialist midwifery service specialises in providing a service to women and their families where drug and alcohol use is problematic. It supports and co-ordinates the care for HIV positive women identified through the HIV antenatal screening programme. It also includes women in prison settings. The service includes all aspects of a vulnerable and socially excluded lifestyle. This involves collaboration across a wide range of statutory and voluntary agencies to address issues such as mental health, domestic violence, sexual abuse, prostitution and HIV. The combined expertise within the service is key to co-ordinating and developing the responses of other agencies and in supporting the longer term needs of drug-using parents and their children.

Cheshire & Wirral Partnership NHS Foundation Trust

The Wirral drugs service achieved one of the best scores in England in Healthcare Commission reports. The service is a good example of co-operation involving Cheshire and Wirral Partnership Trust, the PCT and acute hospital engages peoplewith substance misuse problems in their overall healthcare, both physical and mental wellbeing, through joint teams.

Cheshire and Wirral eating disorder services offers comprehensive services to children, through to adolescents, adults and older people, that are compliant with NICE guidelines and evaluated on ongoing basis.

Outcome collaborative work including Wirral Assertive Outreach team

Enhancing the healing environment projects, including those with service users and staff to promote and enhance therapeutic design into buildings

Bowmere hospital, designed with input at all stages from service users, carers and staff, is highly praised as an example ofhow to create a modern therapeutic inpatient environment. The wards were praised in Star wards and AIMs national reports

East/Central Cheshire PCT

The PCT has produced a range of audit, pathways and guidance. These include: • Cheshire based books on prescription • Audit of dual diagnosis inpatient pathway 2007

Lancashire Care NHS Trust

The trust has introduced a number of initiatives:• Pathways to specialist mental health services for older people with dementia and depression In the Lancaster &

Morecambe area• Lancashire early intervention service – operational policy 2007• Protected therapeutic time - implementation of daily protected therapeutic time on the psychiatric intensive care

wards at Blackburn & Burnley• Guild Lodge secure services, integrated care pathway user manual• East Lancashire health economy are now using the ecpa

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Manchester PCT

The PCT has worked with clinicians and other stakeholders to agree and implement a wide range of guidance, pathways and other initiatives. These include:

• Brief guide to stepped care for common mental health problems North Manchester primary care mental health team, October 2007, including alcohol factfile

• Using simulation modelling to support strategy development in mental health• Symmetric model of mental health services in Manchester, psychosis map• Referral form - primary care mental health team (PCMHT),• Referral into primary care mental health services: ‘Join the Debate’• Single point of entry model for all referrals to primary mental health care• South Manchester Mental Health liaison meeting: an introduction to PBC• Criteria guidance for CMHT• Brief guide to stepped care for common mental health problems• Discussion paper: primary care led mental health service development• Revised version 2007• South Manchester computerised CBT project• Perception of Manchester services for anxiety and depression as they are now 2006• Central Manchester primary care mental health team annual report• Summary of Manchester supporting health programme,• PBC pathways• Manchester depression pathway

The PCT has also developed protocols in the following areas:• Psychological therapies• Depression• Drug problems• Postnatal depression• Schizophrenia• Anxiety disorders• Dementia and memory problems• Depression in older people

Roles of GPSI in primary care mental health

The PCT has also developed protocols in the following areas:• Psychological therapies• Depression• Drug problems• Postnatal depression• Schizophrenia• Anxiety disorders• Dementia and memory problems• Depression in older people

An audit summary that has started to benchmark key outcomes in this service from audits over the last two and a half years, including waiting times, take-up rates, DNA rates, planned ending rates and so on

‘Stepped care’ service model, and clinical activity data for the period 2005-2006, PCT annual report

Merseycare NHS Trust

Liaison mental health services for older people in the acute trust to provide effective cross sector and cross agency working to support older people with mental health problems

The Merseycare NHS criminal justice liaison team have produced a range of protocols in partnership with the police, probation service, courts and criminal justice system. These include:

• Protocol and care pathway for mental healthcare within court services. January 2007• Protocol and pathway for mental healthcare, draft October 2007• Operational specification and protocol for criminal justice mental health liaison Team (CJLT), October 2007• Police custody suites service level agreement

St Helens and Knowsley PCT

The development of brief Interventions for alcohol in primary care.

A list of additional evidence and other supporting material can be found on the NHS North West website atwww.northwest.nhs.uk

Birth• Maternal and post natal depression

• Perinatal mental health and the support of the mentally ill women through pregnancy and birth

• Pre-conception support

• Training for midwifes in mental health assessment

• Referral routes/pathways to access mental health services

• The role of mother and baby mental health units

• Mental Capacity issues and birth

• Substance misuse

• Perceived high use of medication rather than other interventions such as psychological therapies

ChildrenAs previously indicated the children’s pathway group wasresponsible for reviewing CAMHS and for both pathwaygroups the key issue was improving the transition betweenCAMHS and adult services. Other issues identified were:

• Supporting the mental health needs of parents includingthose with moderate and severe mental health problems


• Self harm including consistent access to eating disorderservices

• Stigma & mental health well being, emotional resilience and tackling risk aversion

• Children as carers of those with mental health problems

• Parenting

• Abuse and managing abusive behaviours

• Impact of entry to the juvenile criminal justice system, conduct disorder and personality disorder to adult mental health

Staying healthy• Substance misuse, particularly the need for consistent

messages about risk for mental health/learning disabilityhigher risk populations

• Cultural issues and diversity

• Societal issues and the impact of issues such as deprivation, homelessness and worklessness

• Health promotion for those with mental health problems including obesity, smoking and sexual health

• Employer/corporate support for health

Long-term conditions• Effective mental health interventions to prevent /reduce

co-morbidity

• Role of staff in long term conditions in assessing and delivering psychological therapies and other interventions

• Need for effective liaison services with mental health teams and clearer pathways

• Impact of dementia

Appendix 3Cross Cutting Themes

The group was particularly interested in identifying themes and issues relating to mental health that impact on other clinicalpathway groups. The group and the other pathway groups identified the following cross cutting themes, which are largelyindicative but do demonstrate the way in which mental health impacts across a wide range of services:

• The level and impact of somatisation disorders in those with long term conditions

• Mental health impact on carers

• Difficulty bin accessing services for mild to moderate mental health problems for those with long term conditions

• Meaningful activities including work roles

Planned care• Access to screening for those with mental health

problems

• Mental health/learning disability team input to help mainstream physical healthcare

• Identifying links between non-attendance and mental health problems

• Liaison including joint clinics

• Equity of access to gender realignment services

• Physical and mental health impact of medication

• Informed consent issues

• Equity of access and pro-active reduction of barriers to people with mental health/learning disability problems

• Liaison between services central to support the 30-40%who have mental health problems

Urgent/unplanned care• Strengthen liaison services, multi-agency working and

information sharing

• Support for physical care in mental health settings

• Deliberate self injury/harm


• Risk of medicalising normal emotional reactions

• Role of ambulance/paramedics in sharing care

• The level and impact of somatisation

• Care for those with mental health problems and learningdisability in acute setting and the extension of the skills base for acute care staff

• The impact of somatisation disorders

• Dental health needs of those with mental health problems and learning disability

End of life• Effective interventions for mental health co-morbidity,

effective liaison

• Access to psychological therapies

• Mental health/learning disability teams helping support mainstream access including to mainstream palliative care

• Normalising and openness about death

• Training and skills on end of life care in mental health settings and in mental health for those in end of life teams

• Staff/carer support

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• Comprehensive palliative care provision, for example dementia

• Dementia including recognition at younger age, for example learning disability, alcohol related early onset dementia

• Impact of Mental Capacity Act

• Openness and honesty in giving diagnosis of dementia

• Managing risk of suicide in bereavement pathway

Appendix 4Key Determinates for Mental Health in the North West

NORTH WEST ENGLAND ENGLAND NW RANKINGHIGHEST (out of 10)

Mental health and behavioural disorders incapacity 388.1 262.6 396.1 9benefit claimant rate per 100,000 (2004/05)

% of adults with a limiting long term illness (2001) 20.7 17.9 22.7 9

Five alcohol consumption above ‘sensible’ daily limits 33.1 26.8 34.1 9(2005)

The population health statistics show the North West was again amongst the worst performing in England, with again theNorth East being the only region with a worse performance. Examples include:

NORTH WEST ENGLAND ENGLAND NW RANKINGHIGHEST

% of adults with a GHQ score of four or more (2004) 14.2 13.2 17.5 8

Mortality rates (age-stand) for suicide and injury 18.5 16.4 20.4 9undetermined (2003-05) - Male

Mortality rates (age-stand) for suicide and injury 5.6 5.4 6.4 8undetermined (2003-05) - Female

Self harm hospital admission rates (age stand) 176.6 142.4 251.2 9per 100,000 (2004)

The North West had the highest levels of hospital admission for schizophrenia, anxiety and depression, despite scoringabove the national average in the percentage of LITs self assessed as ‘green’ for having a mental health promotion leadofficer (69%) and a mental health promotion strategy (41.1%).

In terms of patient experiences, the percentage of complaints referred back to North West Trusts was below the nationalaverage at 37.7%. In the Healthcare Commission patient survey 2007, the percentage of mental health respondents whorated their care as good, very good or excellent was the highest in England at 82.3%. Similarly the same survey showed theNorth West had the highest ranking for respondents having at least one care review and having access to an out of hourscontact number. This suggests that despite the high demand mental services, we do generally provide high quality of care

For more information please go the Association of Public Health Observatories website at www.apho.org.uk

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Appendix 5Membership of Clinical Pathway Group

NAME DESIGNATION ORGANISATION

Deborah Bullock Paramedic, Head of Clinical Safety North West Ambulance ServiceJacqui Bussin Consultant - Care of the Elderly St Helens & Knowsley Hospitals NHS TrustMargaret Campbell Assoc Medical Director Bolton, Salford & Trafford Mental Health NHS TrustMiranda Conway Consultant Psychiatrist 5 Boroughs Partnership NHS TrustSandra Critcher Professional Lead OT Manchester Mental Health & Social Care NHS TrustJulie Cullen Project Director North West Mental Health CommissionIan Davidson Consultant Psychiatrist MH Cheshire & Wirral Partnership NHS TrustChairRipu Deo Consultant Psychiatrist Lancashire Care NHS TrustCeri Dornan GP Manchester PCTDeputy ChairMike Doyle Nurse Consultant in clinical risk Bolton, Salford & Trafford Mental Health NHS TrustMoya Duffy GP (BMA) Liverpool PCTDavid Fearnley Medical Dir/Deputy CE Mersey Care NHS TrustJean Jenkins GP - Winsford Central & Eastern Cheshire PCTGraham Jowett Director of Corporate Strategy Calderstones NHS TrustFaye Macrory Consultant Midwife Central Manchester & Manchester Children’s University

Hospitals NHS TrustDebbie Nixon Director of MH services Liverpool PCTTom Pickup MH Team leader Manchester PCTLaura Pogue GPwSI in MH Halton & St Helens PCTNeil McLauchlan Assistant Director for Education NHS North WestSHA Facilitator & CommissioningMelanie Sirotkin Director Public Health Tameside & Glossop PCTJeff Warburton Service Mgr, Nurse Rep Lancashire Care NHS TrustKaren Wilson Exec Dir of Nursing & Care Mersey Care NHS TrustLiz Woodings Community Mental Health Nurse Heywood, Middleton & Rochdale PCT

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EXECUTIVE SUMMARY

For the aspiration of the review to deliver the move of the NHS from good to great, much has to change.

The approach should be bold and visionary, and not just tinker around the edges of a system that

struggles to deliver for people with long term conditions.

A whole system approach is required, working across notjust health systems but social care, education andemployment, with meaningful involvement of the voluntaryand private sectors, enabled through the greater use oftechnology.

There are many examples of excellent innovative, integratedand holistic care for people in the North West andthroughout the NHS, putting best evidence into practice andimproving the lives of people with long term conditions.Clinicians need support to implement change, and to learnfrom others so that best practice can become the consistentnorm for all.

The NHS spends in excess of £11 billion per annum in theNorth West, yet despite this has some of the worst health inEngland. It is the second worst region in England for lifeexpectancy.

Outline recommendations from the group are givenbelow and are described in more detail in the mainbody of the report:

• Personalise care and put the person with the long term condition and/or their carers "in charge"

• A generic patient pathway with a greater focus on self care and recognising the inter-relationships between diseases

• A collaborative care plan as the central component to all care, a true collaboration between the person with a long term condition, family, and professional carers

• Virtual care campus - care should be focused around general practice/primary care, and incorporate all the skills and expertise that the person with a long term condition and their family require

• Skills and roles - the role of the advocate and care coordinator in the care team is seen as key, with the need to redefine roles within the care campus

• The development of the care passport, using the patients’ own health record and care plan

• The concept of personalised budgets should be developed for healthcare based on need and the currentsocial care models, with indicative budgets at patient level

• Population stratification for risk of disease, morbidity,

There are many examples of excellent,innovative, integrated and holisitc care

for people in the northwest❛

❜


Long Term ConditionsClinical Pathway Group

hospitalisation and so on should underpin all strategies for improving health outcomes and care pathways

• NHS organisations need to have mechanisms to investin long term prevention and broader outcomes of care

The health system needs to deliver solutions to overcome:

• Differing professional and organisational cultures

• Organisational barriers

• The need to develop further skills and capacity and financial barriers

The feasibility of the proposed solutions will be developedover the coming months as part of this on-going work onclinical engagement and will be assessed through scenarioplanning exercises that will test out the assumptions andnew models of care.

ForewordOver 1.5 million people in the North West are living with along term condition and this number is increasing everyyear. Defined by the Department of Health as “a conditionthat cannot at present be cured but can be controlled bymedication and other therapies”, long term conditions areusually complex, sometimes unpredictable and can affectmost, if not all aspects of a person’s life.

A group of clinicians from health and social care cametogether in the North West to produce this report. Everymember of the group was passionate about the need toimprove services for people with long term conditions, tohave a greater focus on prevention and early detection, topromote person centred services that fully involve peoplewith long term conditions and their carers, and to providepeople with more information to allow them to be in controlof their condition.

The group researched best practice both nationally andlocally, to demonstrate how services could be improved andexamples are included in the report. Many professionalbodies, voluntary organisations and pressure groupsdescribed issues from the perspective of one or other longterm condition, for example, asthma, motor neuronedisease, diabetes, and so on. The group reviewed thisevidence, but decided that there were common challengesacross all long term conditions and the greatest impactcould be made by taking a generic approach. People withlong term conditions are more likely to be socially isolated,unemployed, live on low incomes and experience difficultieswith accessing basic services.

To move a service for long term conditions from good togreat means that we have to place the person at the centre,deliver a personalised care plan, personalised budgets andcare without boundaries. A whole system approach isneeded, to work across not just health and social are buteducation, employment, the voluntary and private sectors,and enabled through the greater use of technology. Onlythen can we help people to live a full and productive life withtheir long term condition.

IntroductionFor the aspiration of the review to deliver the move of theNHS from good to great, much has to change. Theapproach should be bold and visionary, and not just tinkeraround the edges of a system that struggles to deliver forpeople with long term conditions.

The emerging findings from the pathway groups have beendiscussed and considered widely, through focus groups,public deliberative events, stakeholder and staff engagementevents and comments from these are referred to throughoutthe report. A greater focus on both personalised care andpopulation based targeted prevention of developingconditions, was the over-riding theme from the discussionsand comments provided to the group, and these areconsidered in detail within the report.

This clinical area covers a wide range of conditions, andmany people have more than one long term condition, sothe group decided to describe a generic patient pathwaywith common principles, with case studies drawn fromspecific disease areas.

Numerous areas of excellent practice are seen in the NHS,some of which are highlighted in the case studies, but it isclear these remain in pockets and are not consistent acrossthe care continuum or across the whole NHS and social carelandscape.

Feedback from stakeholders and patients is that the systemcould be much improved to meet personal and populationneeds. Participants at the deliberative event 1 supported:

• A greater focus on prevention of illness and earlier identification of problems, enabling people to stay healthy within their condition

• Personalisation and tailoring of services to the individual

• More involvement of the family and carers

• Clear and consistent pathways for people with specific conditions

• Better sharing of information between teams, departments and services and more joint working

• Choice about where to have care and more community services

• Continuity of care, including having a dedicated key worker for each patient

• Patients being given more information about their care and more support afterwards

The stakeholder group wished the NHS to recognise thecontribution, opportunities and benefits of partnershipworking, particularly with the voluntary sector andcommunity groups in the field of long term conditions,including patient support groups.

“she (the patient) could be directedto a support group. To speak to

others with the condition” 2

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Case for ChangeIn the North West we are living longer. Life expectancy formales has improved by 1.8 years to 75.4 and for females by1.3 yrs to 79.9 in the period 1999 to 2005, but we are notliving better. Here are some statistics to show the scale ofthe problem:

• Seventh worst region for low income

• 16% of people are on benefits

• Over one quarter of children live in poverty


• Over six out of 10 adults are overweight or obese


• Highest level of drug misuse in England

• Highest level of long term mental health problems in England

Inequalities begin from birth and although we are makingprogress, the North West is trailing behind as the secondworst region in England for life expectancy.

Across England, there are over 15 million people with a longterm condition, of which 1.5 million live in the North Westand the number is increasing. It is expected that theprevalence of long term conditions will increase over thenext 20 years to affect nearly three million people in theregion. Not only is this a result of greater morbidity fromlifestyle pressures of obesity, alcohol consumption, and anaging population, but also as we improve survival frompreviously life threatening conditions. Treatments for cancer,HIV, neurological disease and vascular disease mean we aremoving to pro-actively managing these as chronicconditions rather than “curing”.

Patients with long term conditions pose a unique challengeto the healthcare system, as they often have the mostcomplex conditions with multiple co-morbidities.

Fig 1. Prevalence of long term conditions (unadjusted)

CONDITION NUMBER OF CASESRECORDED(Source: QOF data,June 2007)

Asthma 437,245Atrial fibrillation 96,070Cancer 66,265Coronary heart disease 311,011Chronic obstructive pulmonary disease 137,260Diabetes 279,253Epilepsy 49,296Heart failure 62,731Hypertension 929,658Hypothyroidism 182,884Kidney disease 173,053Stroke and transient ischaemic attack 130,803

Within vascular diseases – peripheral vascular disease,diabetes, coronary heart disease, stroke and hypertension –there is enormous overlap. Take for instance chronic kidneydisease – 85% of people with recognised kidney diseasehave hypertension, 30% have diabetes, and 30% othervascular diseases.

However the huge variation in recording by practices ofdisease prevalence through the Quality and Outcomes

Framework is quite striking. This highlights the challenges inusing information technology to best effect at grass rootslevel. Without improvements in these areas the NHS will notbe able to deliver targeted screening.

The chart below shows the wide variance in the prevalenceof kidney disease recorded in QOF data from one PCT:

Fig 2:

The policy framework for the case for change already exists,including National Service Frameworks, Our Health, OurCare, Our Say, and so on. However they have not beenimplemented consistently, and so the patient benefits havenot been fully realised. The group believes there are majorbarriers within the current health and social care structuresand communities that are preventing the systematicimplementation of best practice. The following barriers arediscussed in greater detail within the report.

• Differing professional and organisational cultures

• Organisational barriers

• The need to develop further skills and capacity

• Financial barriers

These barriers have been exacerbated by NHS priorities andinvestments which the group feels have focused on shortterm targets, and have been largely related to access andfinance. For example the measures and targets for activecase management have been numbers and have focused onprevention of hospital admission, rather than enablingpeople to live well with their long term conditions. Inaddition pump priming and double running of services priorto pathway reform has been resisted on resource grounds.The reluctance of NHS organisations to invest in more longterm gains and to focus on broader outcomes of care needsto change.

There are many examples of excellent innovative, integratedand holistic care for people in the North West andthroughout the NHS, which put best evidence into practiceand improve the lives of people with long term conditions.These tend to have been achieved only when highly drivenclinicians have ignored or overcome current boundaries andbarriers, and have been supported by brave and visionarymanagers. People with long term conditions need cliniciansand managers to share their vision, of care withoutboundaries that will enable them to live well. The NHS mustdevelop systems that focus on the patient and family, not onorganisations or health professionals. These systems mustenable the sharing of good practice, and the way that thishas been put into practice. Clinicians need support to

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Chronic Kidney Disease - QOF Prevalence &Age Specific Prevalence Aged 18+ 2006/7 -

By General Practice

National Practice Code

Recommendation

The focus needs to be on personalising care, putting theperson with the long term condition and/or their carers‘in charge’ enabling them to live well.

The need for further development of skills as healtheducators within long term condition management shouldbe considered, as all healthcare professionals do notnecessarily have the skills to provide this support topatients.

A person centred approach considering not just their clinicalneeds, but their social and family circumstances, wasendorsed by the review’s stakeholders group in its report.However, concerns were expressed at the deliberative eventthat this could further exacerbate inequalities, with the mostable and confident navigating the system easily, at theexpense of the most vulnerable, such as the elderly, theinfirm and those without family to look after them or fighttheir corner. The need to consider the individual’s culturalrequirements is frequently not recognised.

Recommendation

The role of the advocate and care coordinator in thecare team is key, with the need to redefine roles withinthe care family/care campus.

Recommendation

Population stratification for risk of disease, morbidity,hospitalisation, and so on, is a crucial component thatneeds to be reflected throughout the reformed carepathways.

It should underpin all strategies for improving healthoutcomes and care pathways. The level of risk should be amajor element that is considered in the collaborative careplan and could potentially inform the level of personalisedbudget available. Further development of practice basedregisters to target screening is needed, as well as thedevelopment of appropriate pathways for preventing furtherprogression of disease.

Generic Patient PathwayThe generic patient journey for people with long termconditions is described in Fig 3.

For people with long term conditions and their families thisis not a linear process. Central to all good care iscollaborative care planning between patient, family and thehealthcare team. This enables the patient to live as well aspossible with their long term conditions, based on theirpersonal goals, beliefs and needs, not on a single disease. Itincludes a plan for what to do if the conditions areexacerbated, and what to do to maintain health andwellbeing. Collaborative care planning should occurrepeatedly based on need, and should also occur when thatperson’s needs change. This is described as a time oftransition. There is more information about this in the latersection on transitions in care.

Two transcending themes of care for people with long termconditions are prevention and self care. Prevention for thepopulation, identifying and working with those at high riskwill be most effective. However it is also key for theindividual with a condition, both to prevent its worsening,and to prevent other long term conditions which commonlyco-exist. Self care is a fact of life, not an option, foreveryone with a long term condition.

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implement change, and to learn from others so that bestpractice can become the consistent norm for all. The currentdelay of 17 years from research evidence to wide scaleimplementation 3 must stop. There is a need for systemsthat can adapt quickly to changing need and demand,where clinicians are empowered to innovate, patient valuesare paramount, and the quality of care and outcomes istransparent.

What is Quality Care:What Stops this from Happening Now?Our shared expectation with patients and families is for personalised care without boundaries. Every person with along term condition should feel that they are in charge andare experts by experience. This should be supported by apersonalised care plan that is agreed collaboratively withtheir family and professional carers. The aim of the care planis to enable the individual to live as well as possible withtheircondition, to achieve personal goals and live their livesto full potential. This section of the report looks at the needfor everyone to work together to support people with longterm conditions and their families and how that can beachieved. The case study below shows how personalisedcare can work well.

Case Study:M is a retired nurse who has moderate ischaemic heart disease on angiogram. She also has irritable bowel syndrome and when stressed experiences severe abdominal pain. She has had exploratory surgery on several occasions but in recent years her surgical team have felt that surgery is compounding her problems and should be avoided if at all possible.

M has a difficult relationship with her local hospital. She is advised to come to hospital if she develops persistent chest pain and because of her known cardiac disease, she tends to be admitted. However when she is in hospital, she is very aware of her five volumes of hospital notes. Sheworries that staff think she is wasting their time and exaggerating her symptoms. The stress of being in hospital tends to trigger her irritable bowel syndrome, further prolonging her stay.

M and her liaison psychiatry team developed guidelinesfor how she wanted to be managed while in hospital. This specifically recommended that she should be admitted for monitoring if she presents with chest painbut also warned staff that such an admission was likelyto be followed by abdominal pain and advised that advice from a senior should be sought if there were concerns about conservative treatment. It made explicit M’s worries about being seen as a nuisance and being rejected. It predicted that the transition from intravenous to oral painkillers was likely to be difficult but that she can manage this with reassurance. M’s cardiologist and surgeon were happy to support these guidelines and to act as a point of reference for staff who do not know M.M kept several copies of these guidelines to give to staff and another copy was placed in her medical records.

In the year before these guidelines were introduced, M spent 68 days in hospital over 3 admissions. In the year following the admission, M has spent 9 days in hospital, again over 3 admissions - and describes these admissions as more constructive and helpful. M says that the guidelines help staff to distinguish between her problems that need physical treatment from the issues that respond best to reassurance. The fact that she developed the advice, and that her cardiologist and surgeon supported this, helps her to feel that she is taking control and responsibility for her situation.

Further information from [email protected]

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Maintenance

PREVENTION

PREVENTION

Palliative

Structured SelfManagement

Education

COLLABORATIVE CARE PLANNINGInformed by assessment of:• family and carer roles• risk and disease severity• self care ability• personal goals• function• psychological health

Includes for patient and family• agreed goals• personal action plans• self management education• treatment plan• support/care team• agreed follow up and access• exacerbation plan

Step up Care

Exacerbation

Self Care

Self Care Self Care

Self Care

Presentation

Diagnosis Initial Severity Assessment

Initial Education and Care Plan

Long Term Conditions Generic Patient Journey

It is the role of the health and social care team to enable,equip and support the individual to self care as well aspossible. This is a crucial element of collaborative care.

Public and professional awareness for early presentationand recognition of disease are also key to the health of thepopulation and the individual.

There will come a time for the individual and family whenpalliative care is most appropriate. This will often need tostart a number of years before the person’s death.

There are many challenges and barriers to patients receivingthis good care at present and these will be highlighted withinthe report as four key challenges.

RecommendationPatient pathways should reflect a greater focus onself care and recognising the inter-relationshipsbetween diseases.

Collaborative care

Collaboration in care is the hallmark of good long termcondition care. This is collaboration between the personwith the condition, their family and their professional careteam. Increasingly people are living with multiple long termconditions and historically, as health professionals, we havefocused on treating the disease. The emphasis must changefrom this, to enabling and supporting the individual to livewell with their condition and to achieve personal life goals.

Whilst the main emphasis in collaborative care is oncollaboration between the patient, family and professionalcarer, true collaboration between members of the care teamis also fundamental.

A collaborative care plan, owned and held by the patient oradvocate is essential to good care. This could be eitherelectronically or paper based, according to the wishes of thepatient.

“the care plan providesBetty with a structure for her

treatment and a sense of control” 4

A collaborative care planning visit should therefore be thecentral component of the continuing patient journey withlong term conditions. A designated care co-ordinator willhave responsibility for ensuring a plan is developed andagreed. This should involve:

Planning for the visit:the visit should be based on information. From a patient andfamily perspective this can include a self assessment of selfmanagement skills, disease control, psychological wellbeing, functional capacity and effectiveness of the care teamto support living with the conditions. From a care teamperspective this will include population and individual riskassessment, of disease progression/complications andhospitalisation, via register management, full collection ofbiomedical measurement related to disease severity, controland co morbidity.

The process of the visit:to ensure a collaborative approach, a shared agenda shouldbe agreed between patient and care team. Assessmentsshould be shared and individualised goals agreed. These willbe personalised life related goals, and should be combinedwith biomedical goals, and personalised action plans toachieve these. Understanding of beliefs and values,

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education and negotiation will be needed to agree these.Care plans will then need to include action plans,exacerbation management and maintenance plans, as wellas health and social care activities to enable diseasemanagement, self management, and an active life with theconditions. Plans for recovery and rehabilitation may well becomponents of the care plan. Follow up and supportarrangements, and contact arrangements at times ofincreased need are also vital components. Key roles withinthe care team including family members need to be agreed,including the roles of advocate, care coordinator, keycontact, and the roles of primary care, specialist care andsocial care team members.

This vision of collaborative care planning extends the currentconcept of annual reviews that are used in many diseaseareas, so that they become more personalised and holisticin nature. An example of how this would work is shownbelow.

Case Study – the ‘Year of Care’

The year of care describes the care that is required fora person with one or more long term condition over a defined period of time. It is agreed with the patient and family/carer at a collaborative care planning visit. Different components of care required within the year of care could be provided by a number of different local providers, including non traditional providers. This may particularly be the case for self management support. As well as defining and agreeing the care required, the year of care approach is seen as a form of patient led commissioning, with choice. This should be linked to locality commissioners, who are required to commission a number of providers to meet the need defined through collaborative care planning. This may also enable more appropriate methods of financing care required by people with long term conditions over a period of time, rather than at a single visit.

Collaborative care planning that defines the year of care for an individual, would naturally link to a care passport, that would enable the patient to access that care at the time of need. There is more information about this later in the report. The concept of the year of care for diabetes is currently being piloted in three PCTs outside the North West.

For further information contact [email protected]

For most people with long term conditions the focus ofcollaborative care planning will be with the extended primarycare team. The role of primary care will need to bestrengthened and developed with new skills and new waysof working in order to deliver more personalised care aroundpatients. For those with more complex disease or need,specialist care givers from different professionalbackgrounds integrating with primary care will be involved.

Recommendation

A collaborative care plan should be the centralcomponent to all care, a true collaboration betweenthe person with a long term condition, family, andprofessional carers

The concept of transitions in care, as well as annual review,can be expanded to understand when collaborative careplanning is needed by the individual.

The care campus is a virtual location which is wherecollaborative care for the individual would take place. It is

not a building or a place; but an approach to deliveringhealthcare focused around the patient and the primary careteam coordinating function. Roles and functions of all careteam members including family are defined andstrengthened. It incorporates health and social care but isnot just about growing the team. Accelerating thedevelopment of care focused on primary care requireschange not just growth

Within the campus are all those people and facilities thatmeet the individuals’ needs:

• The patient enters the centre consisting of case managers, care co-ordinators, educators, health advisors and so on. This should be expanded to include elements of social care, housing, employment

• The second layer consists of primary care doctors, acting as the quality managers, with skills and expertise on problem solving, prioritising individual medical need, managing the healthcare of a small population and linking with other clinicians as the medical lead and co-ordinator

• The third layer consists of specialists including advanced practitioners and consultants, who work with the extendedprimary care team on specialised problems and have an educational role

Recommendation

The care campus would be focused around thegeneral practice/primary care.

Transitions in care

Collaborative care planning will need to occur on a regularperiodic basis, dependent on need, and should occur at alltimes of transition.

Traditionally we have seen transition as being when a patientcrosses a healthcare boundary, such as from hospital tohome or vice versa or from childrens to adult health careteams. However we believe that a transition for a personwith long term conditions should be expanded to includeany time where their care needs change. This shouldtherefore, include a new medical or social care needincluding planned care, pregnancy, new disease orco-morbidity, change in severity of condition or need. Itwould also include other life changes such as changeswithin the family, employment or other living circumstances.

Recommendation

The concept of transition needs to be expandedbeyond children/adult transition to any time ofchanging need.

The extended primary care team

Within the type of care envisaged, the roles of members ofthe care team will evolve. The primary care doctor will havean overarching role for the health of a defined population, inidentifying need, prioritising care and having a problemsolving and diagnostic role. Primary care nurses will have anextended role in care planning and care coordination, andthe primary care team will be expanded to incorporate rolesof other professionals including pharmacists, allied healthprofessionals, health trainers and others. Active casemanagers will be one of the main carers for patients withmore complex needs. The role of the specialist will be tosupport the primary care team, delivering and enabling carein the same setting when appropriate, with an expandededucation role. Furthermore, all members will need to work

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across traditional boundaries of hospital and communitycare, health and social care. Skills of key staff will need toextend to health, social, and psychological needs. The casestudies below demonstrate effective cross boundary andextended primary care team work.

Case Study - Cross Boundary Working

A 90 year old female patient with ischaemic heart disease,hypertension, type 2 diabetes and fibrosing alveolitis, was referred by her GP to the community matron for assessment of failing heath needs. The patient lived at home with her husband, who was suffering from dementia.

The patient’s breathing caused increasingly distressing symptoms for the patient and her family. She became verybreathless on minimal exertion requiring constant careand supervision from a number of professionals. The community matron arranged assessment for oxygen needs with the hospital respiratory physician and specialist nurse and arranged for treatment via a concentrator with the oxygen company. The patient’s oxygen requirements increased over the following weeks and liaison with the respiratory nurse and a Macmillan nurse was arranged regarding appropriate medication to relieve anxiety surrounding her increased breathlessness.

The overall care package as her condition became palliative was funded by continuing health care, to include carers four times per day, seven days per week and a trained nurse seven nights per week. Social care and medical needs were managed and co-ordinated by the community matron. This collaborative working continued over a nine month period without a hospital admission and any intervention from her GP, until he prescribed the medication for the end of life pathway.

The community matron ensured the patient’s husband received support from the dementia nurse to help prepare him for the impending death of his wife.

The district nursing service provided nursing care once/twice per day and monitored for deterioration to enable the end of life pathway to be implemented.

In her role as co-ordinator, the community matron visited on a daily basis to ensure the services involved in thecare delivery were regularly updated and made aware of changes to the patient’s condition.

The patient’s request not to be admitted to the hospiceor her local hospital for treatment and to end her final days at home with her family was respected.

Further information is available from [email protected]

Case Study -Health and Social Care Collaboration

The GP asked the district nurse to assess a patient for care following one of his visits at 3pm on a Friday afternoon. The lady who lived with her daughter, had rheumatoid arthritis. As infection had made her condition worse and she was unable to cope with normal activities of daily living. She had been sleeping in the chair for several nights and had developed a small pressure sore. She was unkempt. The district nurse ordered a packageof home care to start the next day. The social worker reviewed the care the following week and found the lady was independent and coping nicely at home with the extrahelp from the home carer.

The district nurse commented that by having the ability and permission to order a package of home care, the patient was able to stay at home and thus prevented a hospital admission for social care reasons. She also stated that even though ordering the package of home care was time consuming, she felt satisfied a good service had been offered. The patient was put under less stress by just having one professional assess her needs and order a package of care andthis was much better all round.


Prevention and early detection

More work in raising awareness of health and commondiseases needs to be coupled with information on what thepublic can do to prevent illness for themselves.

“There’s more need for prevention.By the time you go to the GPin this situation you are ill” 5

Community pharmacists give patients unparalleled accessand could deliver tailored health promotion, self care andself management services based on their knowledge ofindividual patients’ conditions and their regular face to facecontact. Investment in this area has traditionally beenpatchy, and this opportunity has never been fully exploited.The case study below demonstrates one of theseopportunities.

Case Study - Prevention

A proactive approach to reducing levels of obesity within Lancashire has been taken by Central Lancashire PCT in partnership with Central Lancashire Local Pharmaceutical Committee, working with their weight management care pathway group. Building on a pilot scheme in Coventry, the PCT is finalising a community pharmacy obesity management service. This is based on a personalised behaviour change programme aimed to achieve target weight loss, educate and support patients with healthy living, prevent those at risk of developing long term conditions, and also focussing on traditionally hard to reach groups, children and men.

Data indicated that there may be as many as 53,000 people over 16 years in central lancashire who are morbidly obese but are not recognised as such through GP practice registers. Benefits of the programme include weight reduction, increased activity and mobility and empowering people to self manage. However, perhaps one of the greatest benefits can be linked to the

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Case Study - Extended Primary Care Team

Diabetes care in Bolton is integrated across the care continuum and agreed by Bolton PCT and Bolton Hospitals NHS trust. The majority of routine care is provided by practice based primary care teams. These teams have continual skill development and maintenance within the practice and on formal courses by the specialistdiabetes team. District wide needs such as retinal and foot screening and patient education are provided across the district by PCT staff. Retinal screening treatment pathways integrate with the hospital trust without the need for referral. Foot screening pathways integrate with the community based specialist diabetes team, which alsoworks closely with hospital based colleagues in community and hospital settings. Patients with more complex needs are seen within the practice or in the town centre diabetes centre by the specialist diabetes team, which is part of the PCT. The team also works in the hospital for patients with diabetes who are inpatients, and supports other specialist practitioners such as those in cardiology and surgery. An out of hours advice line is provided by the specialist team for patients and professionals.

Public health teams in Bolton have worked with local communities, the voluntary sector and the local council to develop social prescribing. Health professional can refer patients with long term conditions for social care, such as exercise, community support groups, housing or employment advice and so on, when the need arises.

Further information contact John Dean on [email protected]

In summary, collaborative care planning is central to longterm condition care, but will require a redefinition ofrelationships, the health care team, the location of care, andtransitions. It will also need considerable skill developmentand cultural change for patients, families and careprofessionals. Whilst this may all seem rather distant fromcurrent care, there are many examples of components ofthis vision already in practice.

Collaboration and integrated working across healthand social care

In the North West, local organisations are developingsystems to promote and deliver better care throughpartnership working. Cumbria County Council, building uponsingle assessment arrangements, have aligned teams ofcommunity nurses and social workers for older adultsaround clusters of GP practices to enhance communicationand integrated working. The agencies of each organisationhave been formally trained and accredited in order to enablestaff to assess and arrange the various services requiredacross health and social care and without boundaries. Thiscan include nursing staff assessing and arranging socialcare services and social workers assessing and arranginghealthcare services.

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Case Study - Exhale

Using an active case management approach, Sefton patients with moderate to severe chronic obstructive pulmonary disease (COPD) were proactively introduced to a self-managed programme of pulmonary rehabilitation. The model was based on evidence of successful disease specific self management programmes.

Assessment of patients’ quality of life improvements was demonstrated through a doubling of the average walking distance during the study.

The new care pathway demonstrated a 23% reduction in COPD admission and a 20% reduction in A&E attendances for case managed patients. On a small sample of 30 patients, a saving of £81,425 was demonstrated.


The use of technology could be exploited by the NHS tomaximum effect by providing support to dedicated staff onhow to introduce new technology and how to measure it’seffectiveness.

“Look at Job Centre plus for an accessible model.It gets a positive outcome. You could have touchscreen computers and individual advisors. This

should be aped because it personalised services” 7

Case Study - Using Technology

Blackpool PCT introduced the Telehealth system as part of the new roles of community matrons. It promotes remote monitoring of blood pressure, weight, oxygen saturation, blood sugar monitoring and provides prompts for medication and questions regarding health status that can be set by the supervising clinician. Ten patients with complex needs were specifically chosen. Examples:

Patient 1: Male aged 61 with learning disabilities, very anxious with COPD/ischaemic heart disease/heart failure and type 1 diabetes. Currently taking 15 medications and struggles to differentiate between anxiety and significant cardiac symptoms. Put on support education programme, medication reminder and developed confidence in his ability to self manage

Patient 2: Female aged 62 with learning difficulties with ischaemic heart disease/heart failure/type1 diabetes/renal impairment/atrial fibrillation/ retinopathy. Would not engage with healthcare, abdicating responsibility for her illness. Repeated admissions due to hyper/hypo-glycaemia as she would not monitor her blood glucose. Now monitoring blood sugar, more aware of the effects of missed medication and understanding the relationship between diet, insulin and illness

Patient 3: Female aged 80 with end stage heart failure and severely impaired renal function. Monitoring blood pressure and weight whilst titrating medication, as part of education programme. Patient learning to recognise signs of worsening illness much earlier and initiate intervention. Blood tests still required fortnightly, but now carried outby primary care assistant rather than community matron

Patient 4: Female aged 65 with heart failure and significantly impaired left ventricular function. Very time consuming home visits due to multiple non-specific symptoms whilst titrating medication. Now seen in clinic with clinical parameters available to staff

very essence of going to the pharmacy, and not the doctor for their care.

Further information contact [email protected] 07795 037677

Whilst the prevention of illness has been considered by thestaying health pathway group, within long term conditionswe cannot ignore the need for pro-active diseasemanagement. This relies upon the establishment of effectivepractice based registers, with a system to identify those whoare at risk of developing a long-term condition. A responsiveapproach enables and supports the population in identifyinghow risk factors actually impact on the escalating incidenceof long term conditions. The case study approach belowenables the targeting of screening resources to best effect.

Case Study - Targeting at Risk Patients

The Knowsley local enhanced service commissioned by practice based commissioning groups was established in April 2007, to raise standards in diabetes management beyond the national QOF and establish additional capacityand capability outside hospital care.

A key element to be addressed was the unidentified 1,700 6 patients not currently being treated based on expected population morbidity, and improved self management and education for patients. The programme plans to develop this service further to actively retrieve patients from secondary care and manage them as part ofthe diabetes pathway closer to home.

The Knowsley diabetes patient group has been fundamental to ensuring the service is designed around the needs of patients.


Self care and keeping well

Once the patient has developed a long term condition thereis further potential for the range of healthcare professionalssuch as occupational therapists, physiotherapists andpharmacists, to support self care leading to better healthand other outcomes such as:

• Increase in life expectancy

• Better control over symptoms

• Reduction in pain, anxiety and depression levels

• mprovement in quality of life with greater independence

• Days off work can reduce by 50%

• Increase in social capital, in other words more trainers, active citizens

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Overall, whilst the initial number of contacts were high to set up the equipment, this has now reduced as professionals are familiar with and have confidence in the equipment. Whilst the numbers are small, a reduction of 75% hospital admissions, 43% reduction in home visits and 85% reduction in GP contacts was demonstrated. Front line case managers attribute this to “early results arein relation to improvement of patients’ abilities to self monitor and recognise early signs of worsening condition and are very promising. There is a real shift in consultationtype from face to face to telephone consultation increasing capacity.

Patients have welcomed the project saying “it is reassuring that my physical condition is being monitored. If any of the vital signs are abnormal, I am contacted and asked if I require assistance. As a person living alone, this is a comfort and bolsters my confidence and is so reassuring”.

Further information contact [email protected]

Ownership of care and personalised plan

Individual budgets introduced in social care havedemonstrated that people with long term conditions cantake control over their own care and increase their sense ofwellbeing. This should be extended to aspects of healthcareto give people more choice and control.

Patients should be seen as the leader and owner of theircare and have a personalised plan enabling them to live wellwith their conditions. The development of a personalised/indicative budget dependent on need would enable patientsto access support and services in a more entrepreneurialway and tailor the support to their values and requirements.

Case Study - Personalised Budgets

Helen, 64, from Oldham needed care when she came out of hospital. She had different carers looking after her but this did not work out. It was both exhausting and embarrassing for her. She asked her family to intervene. This was hard for Helen as her family were already subjectto the demands and pressures of their own working lives.

Helen said:“I didn’t know from one day to the next how I was going to manage, due to feeling unwell and also who would be there to support me.”

With her individualised budget, Helen now has the support of her choice. Moreover, she can choose howand when that support is taken up. Now, not only is her personal care no longer so embarrassing for her, but she does not have to rely on her family, even though they remain part of her natural support network.

Further information is available from [email protected]

Care passportThe fundamental requirement of collaborative care describedearlier should be further developed into a care passport,enabling people to access services directly at a time ofneed. These services could include libraries, physicalactivity, psychological support, medical and social careacross the continuum. In addition the patient should holdtheir own care plan which could be either electronically orpaper based depending on the needs of the patient, and

have direct access to their health and social care record.

However, until we address the importance of building thiscapacity for patients and carers in terms of knowledge,understanding and ability to take care of themselves foroptimum health throughout the life of their disease, we willnot achieve this. Anecdotal evidence is widespread this isstill not the case for many patients and carers.

Harnessing the opportunities of the internet to allow patientsto access their records is one step nearer to integration andmany GP practices are signing up to this. Patientinvolvement in their care planning and management can begreatly enhanced through patient level access to their healthrecord.

Case Study - Kidney Care on My Space

Renal patients in Salford can access their records online through a password protected web-site. Have a look for yourself at www.renalpatientview.org/index.do

Further information contact Donal O’Donoghue at donal.o’[email protected]

Case Study - Access to Patient Notes via the Internet

A GP practice in Hyde has introduced a system that allows patient access to their GP health record via the internet. This is a web based service for patients with longterm conditions so they can access their records including test results, medication history, consultation history and so on. Patients choose who they share this with, but significantly, can access their record for other health professionals at time of need, such as visiting a pharmacist or out of hours GP. They can also access it from wherever they choose, whether that is at home, in a library or internet café. Over 250 patients, many with long term conditions, have registered for this interactive service since it began. They can also see high quality information from other web sites linked directly to the medical record, such as Patient UK, and lab tests online UK. Security of the data is provided through password protection processes and each patient has their own unique password following an explicit consent process. Benefits reported include:

• Patients becoming active partners in the doctor-patient relationship

• Helping the clinician to help the individual, by having all the information to hand now

• Encouraging partnership working, including with social care

Further information [email protected]

What is Preventing the Movefrom Good to Great?

To achieve the care model described will require a culturalshift by patients, health and social care professionals andmanagers.

Four areas of key challenges have been identified by thisgroup that prevent good care from happening along thegeneric patient journey and the report sets these out next.

CultureIt is important that everyone with a long term condition hasthe opportunity to reach their personal goals andaspirations. This needs the whole team to adopt a recoverymodel and focus on people’s hopes and goals rather than

pathology and illness.

A lack of public awareness of long term conditions preventsearly detection and accurate early diagnosis and is a barrierto access. In particular services for men, young people andthe black and ethnic minority community needs to be moretailored as these groups do not traditionally approach healthcare services.

There is little information to enable us to understand whypatients and carers perceptions mean they do not want to‘bother’ the doctor, but this is a prevailing attitude in somecommunities. Whilst the majority of the public believe moreexercise would improve their health and many would like totake part in exercise, few actually change their lifestyle. Anew social marketing approach is in the early stages throughthe Our Life programme.

Excessive drinking is highlighted as a problem in all lifestylesurveys and a culture change is required to address thisproblem. Individuals believe government has a large role toplay in tackling this issue. The public are aware diet has amajor influence on health and do want to eat healthier.However, as with exercise, barriers such as cost and timeare reducing their ability to make healthier choices.

Clinical behavioural issues and challenges have arisen fromwithin healthcare - fears of litigation, becoming risk averse,and professional self imposed barriers such as moving andhandling risk in patient’s home, which healthcareprofessionals sometimes avoid, rather than minimise therisk.

Clinical champions often follow failure cycles. In otherwords, when innovative care models are introduced, there islittle planning to maintain these through the LocalDevelopment Plan (LDP) process. Funding stops, staff getdisenfranchised, then the idea gets re-invented a few yearslater, and the cycle repeats itself.

Cross organisational working

Systems need to make the right thing the easiest thing todo, by removing barriers and enabling best practice.

Greater integrated working irrespective of structures is thegoal, but organisational boundaries currently do not supportelectronic communication across health and social caresystems. This was considered inexplicable and frustrating topatients at the deliberative events with many examplescited. Quality needs to be measurable, transparent andaudited. The National Sentinel audit of stroke care was citedas a good example of this. The group considered lack ofresources for measuring quality, and concern that healthcaresystems do not always measure the right things.

Currently quality is measured in silos and not seen as awhole system issue. Only certain aspects of quality anddisease areas are incentivised, such as the Quality andOutcomes Framework with many aspects such as supportfor self management, care coordination and care planningnot included. Commissioning systems require furtherdevelopment to ensure consistency of quality, bycommissioning and providing a common model of care thatremoves organisational boundaries as barriers.

The lack of definition of quality from the patient’s point ofview has not enabled meaningful patient choice to be takenforward. How can quality be made more transparent topatients when quality measures used don’t readily translateto patients language? Clinicians talk about biomedicalmeasures and doctors speak in blood test values, like the

HbA1c test, but patients need to know what in means in realterms to them. In other words what do they have to do toenjoy optimum health? Current staff training and educationto be able to interpret clinical data and translate this forpatients and carers is not currently widespread.

Patient experience is more difficult to measure - the annualHealthcare Commission patient satisfaction and patientexperience results needs to be built into existing processesfor reviewing clinical outcomes, for example cancer followup visits.

Both patients and healthcare professionals experiencedifficulty in signposting patients into appropriate services.A single point of contact to overcome this was a popularsolution.

Skills and capacity

The group acknowledged a big skill gaps in identifying theneed and in delivering self management support in bothprimary care teams and specialist care, despite patientswanting this. Barriers in this area include lack of informationabout how individuals can use the NHS to help themselvesto make healthier choices. Face to face advice wasconsidered by the voluntary sector stakeholders as thepreferred communication route. Right now, not all healthprofessionals receive education and training in long termconditions that would cover:

• The benefits of collaborative working

• The recovery model as used in mental health

• Systems and how they work together

• Mental health issues associated with long term conditions

• Specific conditions

• Screening and holistic assessment for long term conditions

• Risk factors and signs of relapse/deterioration so that appropriate specialist advice can be obtained quickly if and when needed

Finance

Mechanisms are required to incentivise PCTs to invest inprevention of long term conditions and in care pathwaysthat deliver sustainable long term results, such as self care.

Payment by results (PBR) was considered a major barrier byall members of the group. For example, resources and staffproviding care are not always in the right setting - specialistdiabetic nurses are often employed and paid for in a hospitalsetting - and the tariff supports this traditional model ofcare. There is a need to think about care beyond buildings,and the investment should allow organisations to quicklyadapt their resources to reflect these new models of care.

At the deliberative events, patients expressed concerns thatthere would not be sufficient resources to devote to primarycare services. Pump priming and double running of servicesprior to the pathway reform are resisted on resourcegrounds, and this area needs to be addressed in futuredelivery plans.

Little or no investment in supporting the spread of bestpractice and sustainability was cited as a factor here bymembers of the group.

The group agreed resources should be channelled to theareas of biggest impact and not always into specialistniches for small groups. Examples were stroke care andthrombolysis where the evidence was established andreflect the current biggest cause of mortality and disability.

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RecommendationNHS organisations need to have mechanisms toinvest in long term and broader outcomes of care

Implications for Delivery ModelsThe challenges across different health sectors and localauthorities are only too plain to see and although all havethe best interests of the patient at heart, the lack ofintegrated care planning and communication fails to deliverthe world class goal to which we aspire to as fair,personalised, effective and safe health and social care.

Providing high quality care for people with long termconditions requires organisational structures to supportintegrated working and defined care co-ordinators withauthority to enable care across settings.

Lack of co-ordination and ownership coupled withorganisational silos creates problems in care delivery on adaily basis. We have previously demonstrated what aco-ordinated approach can achieve, but as already stated,good/best practice too often exists in pockets. In thissection of the report we look at what needs to be done toaddress this.

A new model of care should be commissioned that enablesintegration of health and social care, with the roles ofprofessionals changing to meet patients’ needs. Thereneeds to be a clear description of what primary care shouldbe like to incorporate social care, community care andspecialists.

The need to integrate mental, physical, social and emotionalhealth in a holistic approach requires a broader range ofskills within the primary care team. If general practice is thelocation of the care campus for most patients, then theprimary care team will need to develop, not just expand andincorporate many other aspects of community care includingsocial care professionals. The role of the specialist will be insupporting the primary care team. Clinical teams will needinvestment in training to enable them to deliver these newmodels.

New services and roles within the community requireinvestment in the infrastructure to enable the quality ofservices to be measured through clinical audit. This auditmight cover the percentage of patients with a care plan andpercentage of patients with telephone numbers to ring in acrisis.

Social marketing techniques could be used to create acultural change that promotes self management, ownershipof care and staying healthy. This forms part of our NHSNorth West Our Life strategy.

FeasibilityFurther work on the feasibility testing will be completedthrough scenario testing.

Implications for EnablersThe current initiative of a year of care being piloted shouldenable the health service to identify how the collaborativecare planning process can be most effective for thispathway.

The better use of information technology is a key enabler,but the technical solutions require different ways of workingby clinicians to maximise these benefits. Quality datasystems and information available to patients and

professional carers should enable this. However, theresources required to capture data to the standards of theSentinel audit on stroke, for example, should not beunderestimated. Personal care records for patients enabledby IT, can be achieved without major resources, as shown inthe Hyde GP case study earlier. The greater use oftechnology in enabling greater access to information,particularly for those staff working in more remote and ruralareas and tele-health solutions, could reduce travellinginconvenience for both patients and staff.

World class commissioning and practice basedcommissioning starts with the needs of patients andfamilies, all stakeholders involved in developingcommissioning plans, and setting relevant standards. Aprimary care model with clear specifications will need to becommissioned. Incentivising collaborative care betweenorganisations and professionals, such as training in newskills, team working and so on will need to be included inthe commissioning specifications within primary care andspecialist services.

Personalised budgets through patient level costings ofpackages of care would enable better informed decisionmaking on how to improve the value of the support forpatients, and reflect individual priorities.

The role of health educators in maximising the active role ofpatients and carers is crucial in the future. Education inschools on prevention and health is an opportunity we havenot yet fully realised.

Agreed quality measures across organisations would enablea less interrupted patient journey. So, for example, PHQ9targets for depression screening in primary care enableearlier interventions before progression of the condition.Hospitalisation rates for avoidable admissions should bemore actively used to stimulate the discussion on how wecan better prevent exacerbations requiring admission.

Incentives need to reward improvement rather than a fixedtarget. The NHS North West strategy for Advancing Qualityhas started implementing this in pilot sites for acute careand a similar approach in primary care should be developed.Mechanisms need to be developed to improve the spread ofbest practice across organisations, and increase thesystematic adoption of good initiatives.

ConclusionTo move a service for long term conditions from good togreat means we need to place the patient at the centre,delivering a personalised care plan, personalised budgetsand care without boundaries. To achieve this will require asignificant cultural change including an extended primarycare team and development of broader skills.

Commissioning for population needs to enable people withlong term conditions live well as part of their community.

A whole system approach is required, working across notjust health, but social care, education and employment, withmeaningful involvement of the voluntary and private sectors,enabled through the greater use of technology.

The aim can be realised by learning and spreading currentbest practice, supporting clinical leadership and innovation,and by commissioning integrated care focused aroundprimary care and the individual. This will enable people tolive well with their long term conditions.

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Appendix 1 Notes

1 Deliberative events are large forums organised to stimulatediscussion and debate around key issues

2 Comment from participant at public deliberative event inJanuary 2008

3 Balas EA, Boren SA; Managing clinical knowledge for health care improvement. Yearbook of Med Informatics 2000; 65-70

4 Comment from participant at staff deliberative event inJanuary 2008

5 Comment from participant at public deliberative event inJanuary 2008

6 York University PBS forecasting tool

7 Comment from stakeholder event in December 2007

Appendix 2 We would like to thank the following organisationsfor their comments and best practice examples:

• Blackpool Primary Care Trust

• Bolton Primary Care Trust

• Bury Primary Care Trust

• Central and Eastern Cheshire Primary Care Trust

• Central Lancashire Local Pharmaceutical Committee

• Central Lancashire Primary Care Trust

• Central Manchester and Manchester

Childrens Hospital NHS Trust

• Cheshire & Wirral Partnership NHS Foundation Trust

• Christie Hospital NHS Foundation Trust

• Cumbria County Council

• East Sussex Local Pharmaceutical Committee

• Heywood, Middleton and Rochdale Primary Care Trust

• Knowsley Primary Care Trust

• Manchester Local Pharmaceutical Committee

• Manchester Primary Care Trust

• Motor Neurone Disease Association

• National Technology Adoption Hub

• North Lancashire Primary Care Trust

• Oldham Primary Care Trust

• Salford Primary Care Trust

• Salford Royal Hospitals NHS Foundation Trust

• Sefton Primary Care Trust

• Stockport Primary Care Trust

• Tameside and Glossop Primary Care Trust

• The Walton Centre

• Wigan Council

Appendix 3 Reports from the following national and

regional NHS Review engagement events havebeen incorporated within the overall review

process by this group, as shown below.

• National deliberative event (first) September

15 2007

• Our NHS Our Future Interim Report October

2007

• National Clinical Summit November

21/22 2007

• North West Clinical Congress November

27 2007

• Focus Groups Report from Picker November

Institute - ‘Exploring attitudes towards 2007

and experience of the NHS in the

North West

• Wider stakeholder event December

12 2007

• National deliberative Event (second) January

24 2008

• North West staff stakeholder event January

29 2008

Details of the Clinical Pathway Group meetings:

• Clinical pathway group meeting 1 October 30 2007

• Clinical pathway group meeting 2 November 12 2007

• Clinical Pathway group meeting 3 November 29 2007

• Clinical pathway group meeting 4 January 15 2008

• Clinical pathway group meeting 5 February 12 2008

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Appendix 4Input of wider stakeholders

Long term conditions wider reference group.Contributions were received through telephone contact, emails, and ad-hoc meetings.

NAME ORGANISATION

John O’Reilly Aintree Hospitals NHS Foundation TrustKathryn Smith Blackpool PCTKeatley Adams Bolton PCTRichard Sly Bury CouncilJerry Martin Bury PCTMark Dickinson Central & Eastern PCTPeter Trainer Christie Hospitals NHS Foundation TrustDr Vaikom Mahadevan Central Manchester and Manchester Children’s University Hospitals NHS TrustPeter Selby Central Manchester and Manchester Children’s University Hospitals NHS TrustHelen Pattie Diabetes UKJulie Byron Diabetes UKPatrick McDowall Lancashire Teaching Hospitals NHS Foundation TrustMichelle Timoney Liverpool PCTHelen Bowker Manchester PCTBev Waddell Manchester PCTGeorgina Bosson Manchester PCTHelen Hosker Manchester PCTLesley Vernon Manchester PCTLouise Stuart Manchester PCTSue Hamman Mid Cheshire Hospitals NHS TrustMax Winson Mid Cheshire Hospitals NHS TrustSally Mann Mid Cheshire Hospitals NHS TrustIvan Benett North Cheshire Hospitals NHS TrustGraham Barton North Cheshire Hospitals NHS TrustSteve Bentley North Cheshire Hospitals NHS TrustZuber Ahmed Oldham PCTBarbara Green Oldham PCTGeorges NgMan Kwong Pennine Acute NHS TrustLiz Stafford Rowlands PharmacyPat Graham Bolton Hospitals NHS TrustMarie Barnes St Helens and Knowsley Hospitals NHS TrustJulie Hendry St Helens and Knowsley Hospitals NHS TrustCaroline Weston Sue Ryder CareDiane Robson Trafford PCTJennifer Sigley Trafford PCTRobert Mitchell BMAGary Simpson Sefton PCTGershan Davies Aintree Hospitals NHS Foundation TrustSwamy Narayana East Lancashire PCTShirley Smith Trafford Hospitals NHS Trust

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Appendix 5Members of the long term conditions clinic working group

NAME ORGANISATION

Jill Stannard (Chair) Adult Social Care Cumbria County CouncilJayne Butters Community Pharmacist Oldham PCTKaren Clancy Respiratory Nurse Consultant Heywood, Middleton and Rochdale PCTSandra Counsell Occupational Therapist Wigan MBCMohan Datta-Chaudhuri Consultant Stockport NHS Foundation TrustJohn Dean (Vice Chair) Medical Director Bolton PCTElaine Gregory Community Nurse Manager Central & Eastern Cheshire PCTHeather Grimbaldeston Public Health Central and Eastern Cheshire PCTMadeline Harding Dentist North West Ambulance Service NHS TrustJohn Lyne Practice Manager Bury PCTAnthony Mackay Rehabilitation Manager Blackburn with Darwen PCTRam Nalla Consultant & BMA North Cheshire Hospitals NHS TrustDonal O’Donaghue Consultant Salford Royal Hospitals NHS Foundation Trust Melanie Ogden SHA Lead NHS North West Thomas Philips GP Blackburn with Darwen PCTJulie Rigby Neuro-Rehabilitation Salford PCT

Consultant PhysiotherapistJune Roberts Nurse Consultant (respiratory) Salford PCTSusan Summers Deputy SHA Lead NHS North WestGeraldine Swift Consultant Psychiatrist Cheshire and Wirral Partnership NHS TrustNigel Taylor GP Sefton PCTHelen Tyrer Physiotherapist Manchester PCT

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EXECUTIVE SUMMARY

This report is a collation of evidence, facts and opinion from an experienced group of stakeholders

across the North West about current and future services in end of life care.

The scope of end of life care is based on the Department of Health (DH) working paper and encompasses

adults with any advancing, progressive, incurable illness such as cancer, heart failure, renal failure,

chronic obstructive pulmonary disease, dementia, stroke, and neurological disease.

The scope includes care given in all settings, including at home, care homes, whether personal care or

nursing care, community hospitals, hospices, acute services, prison or other institutions.

The North West end of life clinical pathway group has developed a five phase pathway shown in the main

report which follows the person’s journey from advancing disease through to death and during

bereavement.

Our vision:To create a world class end of life care

service for people in the North Westthat enables choice and ensures quality.

We aim to:Achieve a 10% reduction in hospital deaths

through enhanced community services by 2012


End of Life CareClinical Pathway Group

According to the NHS end of life care programme 2007 theprinciples that underpin ‘a good death’, are ensuring:

• All people are treated with dignity and respect at the end of their lives

• Pain and suffering is kept to an absolute minimum for people approaching the end of life

• All those approaching end of life have access to physical, psychological, social and spiritual care

• People’s needs, priorities and preferences for end of life care are identified, documented, reviewed, respected and acted upon wherever possible

• The many services required are well co-ordinated, so that each person receives seamless care

• High quality care is provided in the last days of life and after death

• Carers are appropriately supported both during a person’s life, at death and bereavement

• Health and social care professionals at all levels are provided with the necessary education and training to enable them to provide high quality care

• Services provide good value for money for the taxpayer

• The person and their carers have access to care and support

Phase 1 - advancing disease, with a time frame of oneyear or more. Example of practice required; the person isplaced on a supportive care register in a GP practice or carehome. The person is discussed at monthly multi-disciplinarypractice/care home meetings.

Phase 2 - increasing decline, with a time frame ofapproximately six months. Example of practice required;DS1500 eligibility review of benefits, preferred priorities forcare noted, advance care plan in place and trigger forcontinuing healthcare funding assessment.

Phase 3 - last few days of life, examples of practicerequired; primary care team/care home inform communityand out of hours services about the person who should beseen by a doctor. End of life drugs prescribed and obtained

The North West End of Life Care ModelThe model of delivery advocated by the group uses a whole systems approach for all adults with a life limiting disease,regardless of age and setting, moving from recognition of need for end of life care, to care after death. In order to apply themodel, staff across organisations are required to understand the needs and experiences of people and their carers. Thereport sets out a series of quality standards for end of life care and explains how these should be implemented. The modelcomprises five phases as described below, with some examples of practice highlighted:

1 year 6 months 1 yearDeath

BereavementFirst Daysafter Death

Last Daysof Life

IncreasingDecline

AdvancingDisease

1 2 3 4 5

and Liverpool care pathway implemented.

Phase 4 - first few days after death, example of practicerequired; prompt verification and certification of death,relatives being given information on what to do after a death(including D49 leaflet), how to register the death and how tocontact funeral directors.

Phase 5 - bereavement, with a time frame of one year ormore. Examples of practice required; access to appropriatesupport and bereavement services if needed.

With these principles in mind, the group has developed thefollowing key recommendations:

• A robust integrated commissioning framework based onthe North West end of life care model should be

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developed across health, social care, voluntary, charitable and independent sectors, with identified strategic leadership within each PCT. This framework should enable a 10% reduction in hospital deaths by 2012

• Quality standards with associated measures should be developed to support self assessment based on the North West end of life care strategy by August 2008

• A public campaign should be established to raise awareness about end of life care, resulting in a more open conversation within society that also engages people’s views about death and dying

• NHS North West should continue to build on the currentsuccess of implementation of the national end of life care tools; Gold Standards Framework, Liverpool care pathway and preferred priorities for care

• Advance care planning should be undertaken in all sectors of care, preferably electronically based. A person’s preferences and choices should be identified, fully shared with all relevant staff and be accessible 24 hours a day, seven days a week

• Fully integrated and co-ordinated services should be available across organisations with 24/7 access to specialist palliative care services. This should be underpinned by a single point of access for the person and their carers including documented evidence of the use of supportive care registers

• Evidence should be in place of comprehensive holistic assessment that clearly meets the person’s individual needs. The assessment should be based on the North West end of life care model and standards

• Support should be provided for carers of all ages duringthe person’s life and during the bereavement phase

• Workforce development should include mandatory training and education in end of life care for all relevant staff, both clinical and non clinical on a continuing basis, with a particular emphasis on effective and sensitive communication. This is fundamental to ensuring quality in end of life care and must be a key feature in local delivery plans

• A strategy should be developed by the SHA, PCTs and local authorities to support a culture of change in end oflife care, incorporating research, innovation and service improvement

• A financial investment programme should be identified to support the delivery of the health and social care commissioning strategy

ForewordThis report was produced by a process of engagement andinvolvement of a wide diversity of staff from across differentprofessions and organisations and from listening to thepublic.

The group members all shared experience, commitment andknowledge about end of life care and services. The report istherefore grounded in reality and is supported by evidenceand local intelligence.

For those of you involved in end of life care there will not bemany surprises, but what it does do is bring together aconsidered review of the whole system and focuses on theparticular issues that were considered important for theservices and people in the North West.

We are particularly pleased with the model of care wedeveloped and used as the basic template for the pathwayreview. The model is clear and simple and succinctlyoutlines the parameters within which the end of life carereview was based.

We identified 11 recommendations for action and we believethat if these are delivered it will build on the good practicealready in place, and also add the following importantaspects to our current services:

• The development of agreed standards to underpin the commissioning of services which will start to improve the consistency of services across the North West

• The importance of working together as a single pathwayacross organisations that supports choice, personalisedcare and improves the efficiency and effectiveness of the pathway for people at a time when this is needed most

• The importance of using evidence based practice through ensuring all staff are knowledgeable and competent in end of life care

• The recognition of end of life care services as a discreetpathway that needs to be resourced appropriately

We have set one single vision and target that is based onwhat people have said they want and currently too often isnot achieved.

Our vision is: to create a world-class end of life care servicefor people in the North West that enables choice andensures quality.

We aim to: ahieve a 10% reduction in hospital deathsthrough enhanced community services by 2012.

Organisations in the North West have a history of workingtogether and we are known for our excellence in end of lifecare. Our target is ambitious, but our real challenge is toensure that in the process of delivering the target wemodernise our systems and processes, so that they are trulyperson centred and ensure ‘choice’ is available to all overtime. It should not be a quick fix approach but a wholesystem ‘team’ approach, with a long term sustainable planthat improves end of life care for patients and their carersacross the region.

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IntroductionDying, death and bereavement are a natural part of life, butare processes that are increasingly dealt with by the medicalprofession. Dying as a phenomenon is often hidden andseparate from the wider family and usually from the localcommunity.

As a result, our community/society has lost its knowledgeand confidence in supporting each other and there areadditional fears associated with dying, death andbereavement through mis-information and media images ofpainful and difficult death (Kellehear, 2005). Here we set outsome of key statistics around death and dying in the NorthWest.

North West end of life data analysis

Around half a million people die in England in each year Thelarge majority of deaths at the start of the 21st centuryfollow a period of chronic illness, such as heart disease.

In the North West, the total number of deaths in 2006decreased by 4,960 (6.6%) compared with those in 2002. Allbut one of the 24 PCTs within the region have seen adecrease in the number of deaths; this is most distinctive inSefton PCT, where the number of deaths, fell by 14% (496)over the same four year period. The remaining PCT whichwas Warrington, saw an 5% increase in the number ofdeaths (85).

There have also been distinct changes in the age at whichpeople are dying across the North West. Most notable ofthese is the drop of over 1.54% of people dying aged 65 to74. Of the three areas within the North West, GreaterManchester is the only area to see an actual increase (29deaths) in the number of people dying before the age of 54.On a regional level, the number of people dying across allage bands fell between 2002 and 2006.

Cause of deathAcross the North West region there have been someimprovements in the number of deaths caused by ischaemicheart disease, cerebrovascular and other circulatorydiseases. However there has also been over 1%proportionate increase in respiratory deaths and 0.9%increase in neoplasm diagnoses, cited as the cause of deathwithin the region over the past four years.

Place of deathPlace of death remained relatively static between 2002 and2006 across the North West. The acute setting is by far themost common place of death, accounting for almost 60% ofall those recorded. This does not seem to differ when age,gender, disease or locality, are taken in to account.

The second most common place of death is at home, whichaccounts for just under 20% of all deaths recorded acrossall the PCTs within the region.

It would appear that each place of death has a differentcommon cause of death. For example, the most commoncause of death reported within the hospice setting wasneoplasm, where as within the nursing home setting,cereberovascular disease was far more common than any ofthe other causes.

These types of results are also replicated when looking atdata from individual PCT areas and would appear acommon theme across the North West as a whole. Moreinformation can be found in the graphs in Appendix 1.

Hospital deaths There were 38,250 deaths in hospitals in the North West inthe financial year 2005/06 and these were patients who hadbeen admitted to hospital. Of these, 6% died on the daythey were admitted to hospital and 10% died on thefollowing day.

Of all the admissions to hospital for these patients in thefinal year of their lives, 39% of patients had a singleadmission, 53% had two to five admissions and 8% hadmore than five admissions.

It is estimated that each of these patients spent an average34 days in hospital in the final year of their lives, including17 days in their final stay in hospital

This data supports the group’s aim to reduce deaths inhospital by 10% and to provide enhanced provision in thecommunity, ensuring choice and quality.

The Case for ChangeThere are many areas of good practice across the NorthWest in end of life care, but there are also some challengesthat need to be addressed. This section sets out some ofthe barriers and challenges we face and also outlines thequality standards for end of life care that we should beworking towards and how these could be implemented.Barriers to good quality care currently include:

• Social and cultural perceptions of death and dying are problematic and death is not openly discussed

• There is a need to recognise the importance of public health in relation to death and dying

• There is currently a lack of robust commissioning plans for end of life care

• There is inconsistency in the provision of specialist palliative care services, access and a lack of co-ordinated services

• Out of hours services and access to 24 hours, seven days a week care and support vary

• There is lack of suitably skilled/trained staff

• There is a dis-jointed approach to working across organisations, including the voluntary, charitable and independent sector

NHS North West: Cause of Death 2006

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The End of Life Care PathwayThis is what the group thinks the end of life care pathwayshould involve:

Starting the conversation - the lack of acknowledgementof the importance of end of life care, together with failure torecognise and assess the approach of last stages of life,means that there is usually limited or no conversation withthe person and or their family. The use of prognosticindicators to guide clinicians is poor and needs more opendiscussion and development. The importance of havingeffective communications skills is fundamental to improvingthe conversation - staff without these skills may avoid thesubject. It is at this early stage, though, that many importantissues can be safely raised, such as, tissue and organdonation.

Assessment and care planning - there is a lack of a wholesystems approach to assessment and care planning. Staffamy be wary of advance care planning and this is often dueto a limited understanding of the disease trajectory, limitedcommunication skills, confusion regarding roles andresponsibilities and inadequate health and social careassessment skills.

Co-ordination and register - there is variableimplementation of supportive care registers across primarycare/care homes. An identified responsible lead professionalis not always evident. Transfer of information across servicescan be fragmented and often delayed.

Integrated commissioning and service delivery - there isa need for strategic and operational leadership at providerlevel and a requirement for staff to have clarity in their roleand responsibilities. Working between different organisationsand systems can cause confusion and result in afragmented service. There was unanimous support from thepublic and the clinical group that it is vital that an integratedcommunity strategy and service between health and socialcare is developed, and that staff working within the systemhave clear understanding about their roles andresponsibilities. Funding across services is very fragmentedand creates tension in the system. This lack of a coherentfunding base creates many gaps and discontinuity ofservice. There is no doubt that the ideal provision toachieving a 24 hour, seven day service will be difficult toachieve without improved joint funding. Other areas ofinadequacy are:

• Psychological and spiritual care, which we identify as unrecognised and under valued

• Isolated and incompatible IT systems can mean that hospices are often unable to be universally linked to NHS net

• The roll out of end of life care tools is good, but there are still pockets where very little, if anything is in place

• Lack of protocols for managing end of life care for people, which may result in risk averse behaviours affecting decisions relating to the person’s care, such astimely discharge from hospital through a rapid response team

Review - there is a lack of consistency regarding theprocess for reviewing a person’s care and where it is done;there are often no set triggers for further reviews. Theidentification of a lead professional such as a key worker atdifferent points on the pathway is considered best practiceand central to supporting effective reviews.

• There is inconsistent access and provision of continuinghealthcare funding

• Evidence based practice across health and social care is inconsistent

• There is a lack of co-ordinated assessments, integrated care records and accessibility to records, especially out of hours

• There is insufficient sophisticated and integrated information technology provision, resulting in isolated systems

• There is not a comprehensive system for obtaining the persons preferences and cross organisational communication and working

• Welfare rights issues are inconsistently discussed with the person and their families

• There is a need for equal access to spiritual and psychological services across organisations

• Uptake of the three national end of life care tools acrossthe North West varies

• Too many people are dying in hospital - 60% in the North West compared to where people want to die. Evidence suggests that the majority wish to die at home

• The importance and needs of carers are often overlooked

Having identified these, the group went on to discuss thefollowing issues that all support the need for change.

CultureThere is a professional and public ethos of keeping peoplealive no matter what, which means death is perceived asnegative or a failure and is not openly discussed. Thiscreates negative perceptions and attitudes amongst people,families, and professionals. In an engagement event for thepublic held in the North West, they called for morediscussion about death in society and local communitiesand also between clinicians and patients with long termillnesses.

“How do we get people to talk about itwhile they are healthy? We can start

with when they make a will”

“Involving people with chronic long termconditions and the carers -

it is still a taboo - people who are dyingcan’t talk about it themselves”

(National Health Service Northwest, 2007a)

Strategic commissioningThere is a lack of integrated commissioning, planning,contracting and monitoring of service delivery across healthand social care. This will require a PCT and local authorityjoint approach. There is a requirement for a robust servicespecification for health and social care and quality standardsfor end of life care. The lack of access to 24/7 services anda requirement for a co-ordinated response to out of hour’scare calls also need to be addressed

This picture is reflected across many parts of England, butthere are many examples of excellent practice, particularly inthe North West. This is shown in some of the individualexperiences featured in Appendix 4. The real challenge isachieving consistency of service across local communitiesso that people, wherever they are, receive the excellent carethey deserve. The baseline reviews completed by the PCTswill help to inform the commissioning process for the futureand identify gaps in provision and areas of excellence.

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Last days of life - There is a variation in the uptake of theLiverpool care pathway. The dying phase is often difficult torecognise, particularly in non-malignant disease andtherefore a person may not be identified as being in thisphase. When it is recognised, unless the person is on theregister for end of life care, there is a lack of protocols tomanage end of life care, creating inappropriate transfer to anacute setting. This results in high numbers of people dyingin hospital rather than where they would wish/choose to die(usually at home). Deaths in the acute setting are associatedwith environmental issues in regard to privacy dignity andrespect.

Care after death - the problems that arise after death are amixture of issues related to either where the patient died,whether in the home or in the community and/or generalinconsistency of provision, for example, bereavementsupport may not be available. The lack of protocols formanaging expected out of hours death in the communitycan led to unnecessary calls, which often results in the needto involve the police and coroner. This creates furtherdistress to the carer and family. In the hospital there areoften concerns about viewing the deceased and these relateto the environmental factors such as poor facilities in themortuary, lack of privacy and personal time in the ward.

Support for carers - there is inconsistent support for carersacross sectors and organisations. This can create conflictbetween the person and their carer, especially if the carerhas not been involved in any initial discussions. An exampleof this would be the person’s preferred place of care anddeath. There is also a lack of knowledge and provision ofinformation about referral routes to readily accessiblewelfare rights, continuing healthcare funding, respiteservices, and so on.

Workforce and Education DevelopmentLack of appropriate staffing can result in sub-optimal careand is of particular concern in terms of providing a 24 hourservice across health and social care. The workforce for endof life care covers many different disciplines and workacross many different organisations, which makes it moredifficult to capture the total workforce picture. There arehowever some areas where we know there are shortagesand hard to fill posts, particularly in specialist areas likepalliative care medicine.

There is a requirement to integrate end of life training in preand post registration courses for doctors, nurses, alliedhealth professionals, social workers and pharmacists. It isalso important to recognise the need for education for manyother groups who are often not considered, for exampleparamedics, care home staff, prison staff, domestics,porters and reception staff. There is a requirement for aneducation, skills and training strategy to be developed forend of life care, which should include mandatorycommunication skills training for relevant staff.

Measurement and information systems

The current systems for monitoring and assessing end of lifecare services vary across different organisations, whichmake comparisons either impossible or difficult. The datacollected nationally for palliative care is not mandatory andthe general accuracy is questionable due to the variation inthe system. The importance of information and intelligenceon the quality of services delivered needs to improve, sothat commissioners and providers can benchmarkthemselves against outcomes, assess progress and mostimportantly demonstrate that services are meeting people’sneeds.

FundingThere appears to be a lack of incentives and/or support fortraining time for staff in care homes and also a lack ofunderstanding about resources that may be available tounpaid carers, for example attendance allowance. Fundingfor end of life care needs to be developed to identify the truecost for this service. In the current system, funding for endof life care tends not to be uniquely attributed to thisservice, except perhaps for specialist medical posts. Thereis difficulty in accessing funding for continuing healthcare, inparticular for people with a non-cancer diagnosis.Differences such as funding source, which is free in the NHSand not in social care, and barriers between social care andhealthcare create tensions.

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The North West End of Life Care ModelThe model of delivery advocated by this group uses a whole systems approach for all adults with a life limiting disease,regardless of age and setting, and this is set out in this section of the report. It moves from recognition of need for end of lifecare, to care after death. In order to apply the model, staff across organisations are required to understand the needs andexperiences of people and their carers. The pathway model identifies five key phases, outlined below, along with someexamples of practice.

Advancing disease - timeframe is one year or more. Example of practice required, the person is placed on a supportive care register in practice/care home. The person is discussed at monthly multi-disciplinary practice/care home meetings.

Increasing decline - timeframe is approximately six months. Example of practice required, DS1500 eligibility review of benefits, preferred priorities for care noted, advance care plan in place and trigger for continuing healthcare funding assessment.

Last days of life - timeframe is the last few days. Examples of practice required - primary care team/care home inform community and out of hours services about the person who should be seen by a doctor. End of life drugs prescribed and obtained, and Liverpool Care Pathway (LCP) implemented.

First days after death - timeframe is the first few days. Examples of practice required include prompt verification and certification of death, relatives being given information on what to do after a death (including D49 leaflet), how to register the death and how to contact funeral directors.

Bereavement - timeframe is one year or more. Examples of practice required include access to appropriate support and bereavement services if required.

1 year 6 months 1 yearDeath

BereavementFirst Daysafter Death

Last Daysof Life

IncreasingDecline

AdvancingDisease

1 2 3 4 5

What would Good Quality CareLook Like and what Prevents

this Happening?The profile of end of life care in health and social care hasbeen relatively low in the past. This section provides aframework for good quality care using evidence of bestpractice. It covers a range of quality standards and howthese should be implemented. Case studies showing howpatients have benefited from these quality standards wherethey have already been used in the North West can be foundin Appendix 3.

Public profileIn a 2005 UK survey by ICM (Feinemann, 2006) 67% ofpeople over 65 had made a will and 51% had discussedhow they would like to die, which leaves a large majority ofthe population not having had any discussion. Death anddying is a subject that is often avoided in society today andin the same study 66% of bereaved relatives had neverdiscussed with their loved ones their preferred place of careand death.

Public health approaches to end of life care mean a pursuitof the goals of prevention, early intervention and harmminimisation within all end of life care policy and practiceinitiatives. It builds community capacity through workingwith local communities, public education, legislative andpolicy changes (International Working Group on Death,Dying & Bereavement, 2005:159).

Below are a series of standards for offering the best qualityend of life care for people in the North West and how thesecould become a reality.

Quality standardHealth and social care commissioners will be required todevelop a public health strategy (promoting health andwellbeing) which is based on changing society’s attitudeto death and dying and supports reducing bereavementmorbidity and mortality (DH, 2006b:17).

The principles for implementation are:

• Patient and public involvement forums are actively engaged in end of life care services (DH, 2007b)

• A public health strategy, promoting health andwellbeing and framework is in place, with an emphasis on social and corporate citizenship responsibilities, with an emphasis on tissue and organ donation

• Satisfaction surveys/complaints are regularly undertakenand are proactively used to improve services

• There is a level of engagement with the media, with anemphasis on the importance of sharing the experience of a good death

• LINks forums will be actively engaged in end of life services

• Hospices and palliative care services have community engagement as part of their local delivery plan

• Recognise the importance of activities undertaken by community, independent and voluntary sector organisations, which contribute to end of life care, resulting in less pressure on statutory services(NHS Northwest, 2007b)

Quality standardCommissioners will work with local partners includingthe voluntary sector and local authority to establish longterm strategies for understanding and addressing theneeds of the people they serve (DH, 2007d).

Commissioning is underpinned by compliance with theNICE and the end of life care guidance within thenational service frameworks (NICE, 2004) (DH, 2005a).


• A joint health and social care commissioning framework is in place for end of life care services

• Commissioning needs to be based on the needs of the local population, with an appropriate range and volume of services (NICE, 2004:11)

• Three to five year contracts with service providers to encourage stability of service delivery

• Each PCT has a commissioner for end of life care

• PCTs should ensure that they commission services fromhealthcare professionals who have received end of life training at the appropriate level and can demonstrate this (DH, 2007a:70)

• A quality outcomes framework is in place as part of the commissioning framework. Contracting should be transparent, equitable, of high quality and have measurable outcomes

• Joint PCT and local authority monitoring systems for end of life care should be devised and audited

• The Healthcare Commission and its future successor needs to include end of life care services in their assessment framework

• Pooled budgets for health and social care

• Development of compatible integrated information systems

• An end of life care co-ordinating centre for out of hours with an attached rapid response team, working as a onecall centre system

• Systems in place in all care settings to help with anticipating prescribing and access to drugs and equipment within identified time limits

• Prognostic indicator guidance is used for every person with an identified life limiting disease (Thomas & Sawkins, 2007)

• The views of people and their carers are taken into account in developing and evaluating end of life care services (NICE, 2004:7))

• Consistent and effective services 24/7 across both generic and specialist services

• Local area agreements should incorporate local targets in end of life care

• Joint strategic needs assessment plans incorporate endof life care

Quality standardThere is an effective end of life care pathway based onthe North West model that is person centred. Thepathway should be underpinned by strategic partnership,with co-ordination across all organisations and atoperational level between services delivered byhospitals, PCTs, social care, ambulance and voluntarysector to provide a seamless service (DH, 2006b).

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End of Life PathwayOver the last three years the national end of life careprogramme has demonstrated the importance of partnershipworking needed to implement the recommended tools ofgood practice (NHS End of Life Care Programme, 2005;Lancashire & South Cumbria Cancer Network 2008;MCPCIL, 2007).

Following the publication of ‘Building on the Best - choice,responsiveness and equity in the NHS’ (DH, 2003a), it wasshown that people and carers want choice over care at theend of life. This has been reinforced in the consultationdocuments Our Health, Our Care, Our Say (Opinion LeaderResearch, 2006).


• Comprehensive implementation across services of the three national tools:

- PPC recognises the importance of choice and the need for advance care planning to ensure that people have choice

- GSF provides a model for primary care aiming to improve communication between the person, families and healthcare professionals and adapted for care home setting

- Liverpool care pathway for the dying developed to take the best of hospice care into other care settings, and includes symptom control guidelines

• Choice for people, their carers and families is important to ensure that individual needs are identified and an appropriate plan of care is agreed and delivered. The importance of choice and a rising expectation that choice is available will need to be included in service models for the future throughout the care pathway journey

• Wherever possible, in social care, individualised budgetsshould be offered to enable people to exercise their full choices in the social care services they require

Quality standardEnsure that discussions with individuals regarding endof life issues are undertaken by appropriately trainedstaff (NICE, 2004).


• All senior healthcare professionals will be able to demonstrate that they have a level of competence to communicate complex information to the person and their families, involving them in clinical decisions and offering choice (DH, 2007a:72)

• Health and social care professionals are competent in communication skills related to end of life advance care planning in all life limiting disease groups. This may include discussions regarding tissue and organ donation (DH, 2005a)

• Professionals caring for people with long term conditions need to recognise and discuss end of life care issues with the person/family

• Identification of the lead professional, or key worker, is paramount to ensure timely communication

Quality standardAll services must ensure that the needs of the personwith an advancing, life-limiting illness are assessed andthe information is communicated within the team and toother professionals as appropriate. Advance careplanning and the end of life care tools are used in allcare settings (NICE, 2004:11)


• Guidelines for assessment are in place in relation to the following domains - physical, including personal care; psychological, social, religious/spiritual, cultural and carers needs; information for individuals and their carers (DH, 2004a:18)

• Annual audit of PCTs and hospital trusts of the uptake of the end of life care tools and quality of care achieved

• Records clearly articulate the phase in line with the North West model. These must be transferable and accessible across partner organisations, preferably through fully compatible and integrated IT systems

• Gold Standard Framework, or an equivalent model, is in place in all GP practices and care homes

• Single assessment process is in place across health andsocial care (DH, 2004b)

• Named lead professional, or key worker, is identified in all care plans and communicated to all individuals and teams involved in the care of the person. This must alsoinclude carers and changes to the names of the lead professional (NICE, 2004:7)

• Preferred priorities for care/advance care planning are inuse in all settings

• The privacy and dignity of people will be respected and maintained at all times and in all environments

• Protocols for continuing healthcare funding are consistently and equitably applied

• The requirements of the Mental Capacity Act (MCA) (Department for Constitutional Affairs, 2005) need to be taken into consideration at all points of assessment and care planning and throughout care delivery

• Discussions regarding welfare rights referral will take place as early as possible

• People who choose to, have a completed advance care planning in place that is timely and regularly reviewed(Henry C & Seymour, J 2007)

• Protocols for assessment of the persons needs in relation to specialist equipment are in place

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1Starting the conversation

1Assessment & Care Planning

Quality standardAll organisations providing end of life care mustimplement processes to ensure effective inter-professional communication. Mechanisms need to beestablished to ensure that each person approaching endof life receives co-ordinated care in accordance with thecare plan available 24 hours a day, seven days a weekthroughout the disease trajectory (Richards, 2007; NICE,2004:7).


• Supportive care register is in place and accessible across all sectors 24 hours a day, seven days a week. (Thomas & Sawkins, 2007)

• The North West end of life model is used for identifying significant points in the persons journey and used as a lever for action

• Health and social care staff providing day to day care for the person must be at the core of end of life services(NICE, 2004)

• The person’s progression through the end of life care model is communicated across all sectors and within the wider multi-disciplinary team

• The person’s journey and pathway of care is seamless across all organisations

• A single point of contact, which can deal with clinical and social care for patients and provide a consistent point of contact for information and reassurance 24 hours a day, seven days a week (NHS Northwest, 2007b)

Quality standardTo enable choice for the dying, PCTs, social andhealthcare commissioners must review the availabilityand quality of end of life care services in different caresettings, with direction and support from the North WestSHA. This will take account of current guidance and thework undertaken to develop baseline reviews of end oflife service provision (Richards, 2007).


• Clearly identified leadership at operational level for end of life care

• Individualised information is effectively transferred in a timely manner between organisations and sectors, ideally by fully integrated and compatible IT systems

• Protocols for managing people coming to the end of life are in place across all service providers, including a ‘Do not attempt to resuscitate’ policy

• Rapid discharge pathways are in place for people in acute care who wish to die at home; including access toequipment without undue delay, within 24 to 48 hours; two hours for ambulance transfer of dying person for rapid discharge. This will require the development of systems and processes (NICE, 2004)

• Domiciliary symptom control treatments are provided in

1 2 3Co-ordination of Care

the community if required by medical and nursing services (NICE, 2004:10)

• Rapid response services available to meet the changing needs of the person and their carers

• Multi-disciplinary teams for health and social care provide generalist and specialist palliative care, with integrated models of care delivery and regular team meetings that assess the care needs of the individual and their family/carer(s)

• Access to specialist spiritual, psychological, social assessment and rehabilitation services for all life-limitingillnesses

Quality standardIntegrated multi-disciplinary team meetings are heldinvolving all relevant staff across sectors, with theoutcome of the discussions recorded andcommunicated to all relevant staff, the person and theirfamily. This would be at significant trigger points alongthe end of life care model, including diagnosis anddisease progression (NICE, 2004:41)


• Monthly integrated multi-disciplinary meetings across allcare settings take place

• Changes in the person’s phase ‘colour coding status’, as per the North West end of life care model are communicated across providers using a standardised format, for example an out of hours handover form

• Services are available to meet the changing needs of the person and their family as identified by the review process, for example rapid response teams beingavailable in the community

• Consideration of transfer of care for teenagers must be considered as part of the reviews, where appropriate

Quality standardChoice of place of care and death and quality of care willbe measured and monitored by PCTs and the HealthcareCommission.


• There is a 10% reduction in hospital deaths through enhanced community services by 2012

• Access to appropriate services in the community setting, such as Crossroads, Marie Curie nursing, night sitting from charitable and voluntary sectors

• Liverpool care pathway for the dying should be used in all locations to identify and address the needs of all people who are dying (NICE, 2004:11)

• Use of prognostic indicator guidance criteria for use of the Liverpool care pathway and multi-disciplinary team discussion is evident when diagnosing dying

• Spiritual/psychological support services should be available 24 hours a day, seven days a week

1 2 3Integrated Service Delivery

1 2 3Review

3Last Days of Life

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• Anticipatory prescribing for common symptoms is available in the community with access to equipment and medication 24/7 without undue delay(NICE, 2004: 10)

• People die where they choose whenever possible and with dignity. This will be evidenced by an increasing uptake and audit of the preferred priorities for care document across sectors, as well as a reduction in unnecessary hospital admissions in the dying phase

• Further discussion regarding tissue/organ donation with the person and their carers in a sensitive manner, accommodating the wishes of the person, their family and their carers

• There is an assurance that at the time of the person’s death, staff will treat the person and their family with care, sensitivity and respect (DH, 2003b:11)

Quality standardThere is an integrated approach to care after death bythe implementation of protocols and guidelines in allappropriate care settings including access tobereavement support services.


• The care after death section of the Liverpool care pathway to be used for all deaths, or other equivalent locally developed protocols

• Protocols and guidelines agreed regarding the involvement of the police and coroners for out of hours expected deaths, for example nurse verification of expected death

• Viewing arrangements in place for families of the deceased both on the hospital ward, in the care home and in the mortuary. This needs to take into account individual beliefs, culture, religion and values(DH, 2006a)

• Integrated, co-ordinated and individualised response to the bereavement needs of those affected by the death of an individual (DH, 2005b)

• Where organ donation has been identified, protocols arefollowed as necessary with tact and sensitivity

• The management of sudden death may require additional support for both the families and staff involved, for example when there has been neonatal death or suicide

• Special attention and services may be required for children who lose parents (see children’s pathway)

Quality standardCarers should have their needs assessed independently,with access to appropriate and timely verbal and writteninformation, including access to practical help andwelfare rights (Great Britain, 2004)


• Provider organisations should nominate a lead person tooversee the development and implementation of services that specifically focus on the needs of families and carers during the person’s life and in bereavement, which reflect cultural sensitivities (NICE, 2004:12-13)

• All carers are offered an independent carer’s assessment

• Equitable and timely access to welfare rights across all sectors

• Independent support for family and carers from specialist services such as hospices, specialist palliativecare teams

• Timely and equitable access to carer support schemes at any point during end of life care

• Appropriate, timely and accessible information is readily available, and meets the need of a diverse population, taking into consideration issues including physical and learning disability and ethnicity

• Support for carers in line with protocol when organ donation has been agreed

• Employer organisations have policies in place to enable their staff who are carers to work and to care

Quality standardThe North West SHA should work closely with servicesto determine and meet workforce requirements and toensure education and training programmes are availablefor all health and social care staff (NICE, 2004:13)

Provider organisations should identify staff that maybenefit from training and should facilitate theirparticipation in training and ongoing development.Individual practitioners should ensure they have theknowledge and skills required for the roles theyundertake within the spectrum of end of life care(NICE, 2004:14)

Workforce and EducationThe workforce, education and training strategy is central toachieving high standards of care. It is needed bothnationally and regionally to ensure end of life careknowledge, skills and attitudes are incorporated in to preand post registration training for all professions involved inend of life care. A competency based approach to learningis needed using the clinical pathway and model advocatedin this report for all clinical and non clinical staff, includinginduction programmes for new staff. The North West hasidentified three levels of involvement in the end of life careservice that will be used to develop an education strategyfor the future. Consideration should be given to mandatoryrequirements, in particular for communications skills. Thereare many areas of good practice in the region to build upon,and these include shared learning across health and socialcare and shared learning amongst different staff groups.

There is a need to identify dedicated resources that willenable educators to provide the education and organisationsto release the staff to undertake the training. A longer termstrategic approach between professional bodies,commissioners and providers is needed.

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• The SHA will be required to develop an education strategy that is competency based, for all regulated professionals, with pre and post registration training on end of life care. Education is also required for previously under recognised groups such as prison staff, paramedics, allied health professional and care homes

• All pre registration courses for health and social care workers should include end of life care. Professional bodies should have core curricula for end of life care incorporated in their training programmes

• All staff involved in the delivery of services must receive training on end of life care, such as porters, cleaners, receptionists and so on

• Workforce planning and future requirements based on needs assessment should be reflected in the commissioning strategy. This should include the development of specialist roles, including children’s services, with reference to the contribution of health care scientists

• Education/training for the person and their carers that responds to changing needs across the spectrum of theend of life care model encouraging self care and family care

• Equitable access to funding and training budgets for staff across provider organisations working within end oflife care

• Equitable procedures in place to ensure staff can be released to continuously update their skills and knowledge, and meet their continuing professional development requirements

• Mandatory and fully funded appropriate end of life care education for all health and social care professionals

• Communication skills training should be mandatory for all staff and there should be advanced communications skills training for staff in specialist roles

• Training for the MCA is required for all staff

• Assessment skills in relation to psychological and spiritual needs should be part of the education and training strategy for all staff

• Community teams are identified as key partners in enabling people to die at home, including care homes

Quality standardThe importance of research, evidence based practice,audit and innovative ways of working are vital to ensurestaff and organisations constantly keep up to date withbest practice but also support a culture of continuousimprovement.


• The development of a network to support innovation in practice is recommended. The network would:

- Include all staff working in end of life care, the person, carers, educationalists, and academics from all sectors, including NHS, social care, independent sector, charitable organisations, voluntary organisations, police, ambulance

- Review practice, develop new ideas and test out new models, new knowledge and/or technology

- Create the opportunity for the development of a community of practitioners as ‘spearhead’ leaders in the world of end of life care

• The SHA should have a defined strategy for research and development for end of life care

Measurement and Information SystemsQuality standardsEffective, timely and relevant end of life care informationshould be available to individuals, commissioners,clinicians, service providers and policy makers in orderfor commissioners to monitor the effective delivery ofservices. Measurable outcomes based on qualitystandards are crucial. The North West SHA should agreeto collect a minimum data set on each of its serviceusers for end of life care across the North West(DH, 2004a:18)


• Quality standards are to be developed nationally and adopted across the North West

• Effective peer review of end of life care services across all sectors to be undertaken

• Systems in place to audit the uptake and implementation of end of life care tools and the quality of care delivered

• Quality standards for end of life care assessed by the regulators, the Healthcare Commission, and Commission for Social Care Inspection

• Mandatory collection of national minimum data set for palliative care

• Mandatory bi-annual national care of the dying audit across all providers of end of life care

• Surveys of bereaved relatives and views of care using the VOICES questionnaire

• Development of compatible integrated information systems that enabless measurement/audit of end of life care services

Quality standardEnd of life care commissioning strategies are supportedby the required resources to enable service provisionand development based on assessed needs and qualitystandards.

FundingThe resources required for end of life care need to bedeveloped in partnership with the key stakeholders tomaximise the opportunities that partnership workingprovides. The baseline reviews and this report will be usedwith our partners in local authority, the PCTs and the SHA toidentify the future strategy and resources that are needed todeliver end of life care services.


• A service specification with service level agreement to support end of life care across hospital, hospice and community settings

• Equitable and timely access to continuing healthcare funding

• Funding to support substantive posts for end of life carefacilitators/leads across all sectors

• Level of funding is agreed for staff training and development across provider organisations of end of lifecare

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fully shared with all relevant staff and accessible 24 hours a day, seven days a week

• Fully integrated and co-ordinated services should be available across organisations with 24/7 access to specialist palliative care services. This should be underpinned by a single point of access for the person and their carers, including documented evidence of the use of supportive care registers

• There should be in place evidence of comprehensive holistic assessment that clearly meets the person’s individual needs. The assessment should be based on the North West end of life care model and standards

• Support should be provided for carers of all ages duringthe person’s life and during the bereavement phase

• Workforce development, with mandatory training and education in end of life care and a particular emphasis on effective and sensitive communication, should be provided for all relevant staff, both clinical and non clinical, on a continuing basis. This is fundamental to ensuring quality in end of life care and must be a key feature in local delivery plans

• A strategy should be developed by the SHA, PCTs and the local authority to support a culture of change in end of life care, incorporating research, innovation and service improvement

• A financial investment programme should be identified to support the delivery of the health and social care commissioning strategy

• Increase the end of life care component within the Quality Outcomes Framework

• Funding mechanism in place to support third sector services

Leadership within organisations

Leadership is needed at all levels to provide direction,motivation, drive, support and to demonstrate acommitment to staff working in this area. In order to delivercross-organisational models of service, joint developmentssuch as co-ordination and education/training roles withdedicated time and responsibilities for end of life care suchas coordination roles are needed to deliver this agenda.

Communication strategy

The implications of delivering a first class end of life careservice will require as a priority a communication strategythat puts the person and carers at the centre of the systemand simplifies communication across all organisationsinvolved.

Achieving the Quality StandardsTo achieve these quality standards, the following actionsmust be taken:

ACTION TIMEFRAME

1.Communicate report through March 2008web site, networksand providers)

2. Influence chief executive First draft officers, commissioners and July 2008other key stakeholders

3.North West National Palliative July 2008Care conference

4.National strategy launch July 2008

5.Pilot standards September 2008

6. Implement standards based April 2009commissioning framework

7.Establish a North West partnership April 2008board for end of life care

Key Recommendations• A robust integrated commissioning framework based on

the North West end of life care model should be developed across health, social care, voluntary, charitable and independent sectors, with identified strategic leadership within each PCT. This framework should enable a 10% reduction in hospital deaths by 2012

• Quality standards with associated measures should be developed to support self-assessment based on the North West end of life care strategy by August 2008

• A public campaign should be established to raise awareness about end of life care, resulting in a more open conversation within society that also engages people’s views about death and dying

• The NHS North West should continue to build on the current success of implementation of the national end oflife care tools - GSF, LCP, PPC

• Advance care planning should be undertaken in all sectors of care, preferably electronically based. A person’s preferences and choices should be identified,

Appendix 1Cause of Death Graphs

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Cause of Death: Cumbria & Lancashire 2006

Cause of Death: Cheshire & Merseyside 2006

Cause of Death: Greater Manchester 2006

Appendix 2This section looks at cross cutting themes that have beendiscussed with chairs and facilitators from other clinicalpathway groups.

Urgent care

• Are out of hours services co-terminus or separate?• We need an integrated IT system

Long term conditions

• When and how do we start the conversation?

Children

• Is joint working needed? Who’s going to do it? Is end oflife for children the responsibility of end of life care or children’s?

Staying healthy

• We need to develop a social marketing model for end oflife care

Birth

• Bereavement support commissioned across health community

Planned care

• We need integration and to recognising overlapping prognostic indicators

• Integrated IT

Mental health

• Identified lead for end of life within psychiatric services• Integrate end of life into dementia and learning difficulty

cases• Do not assume staff have end of life skills

Below are the issues raised by the other clinical pathwaygroups in relation to end of life care.

Urgent care• Where does end of life care start?• How do we know about the care package when patient

has an acute episode? This considered issues such asis acute intervention appropriate?

Long term conditions

• When does end of life care start? Think about patients living with COPD/heart failure who may need palliative care for two years before they die

• Access to enhanced care for patients who have non malignant disease

• Access to specific services for example respiratory management at home for people with motor neurone disease and multiple sclerosis

• At what point with long term conditions do we plan/discuss end of life care?

• Address provision to respite to support carers through long term conditions/end of life

• Integration across long term conditions and palliative care. Need for psychological support and mental health care

• Adaptations to home environment should be given priority for palliative care patients

• Urgent access needed for specialised equipment, including at weekends. Contact details should be part ofcare plan

• Different time spans for long term conditions and end oflife care, for example with conditions like motor neuronedisease and dementia

• Involve patients at time of terminal diagnosis being made and have open dialogue

• Palliative care in care home establishments to prevent avoidable hospital admissions and support patient preferences

• Guarantee equitable service to all patients living with palliative disease

Children• Maintain life for children until death, supporting them to

take part in normal activities like, school, play, and socialising

• Maintain normality until death• Planned death versus unplanned• Children are individuals and have individual needs,

dependent on their stage of development• Who’s responsible for this area? The childrens clinical

group or end of life clinical group?

Staying healthy

• Develop a social marketing strategy for end of life care• Staff believing in and signposting staying healthy

services • Mental health - ‘compressing morbidity’ choice

- improving quality of death• Employers/companies should be supportive• Development of bereavement counselling as a standard

intervention for family members• All staff should be trained and confident to deliver end

of life care

Birth• Bereavement support for intrauterine deaths, stillbirths,

termination of pregnancy and neonatal deaths• Bereavement care needs resourcing and skills• Counselling for termination of pregnancy and early

pregnancy loss• Health visitors need training in mental health issues/end

of life care

Planned care• Palliative care and who delivers to all ages? Children’s

issues• Working with end of life services, for example

undertakers• Supportive and palliative care guidance, involvement of

wider multi-disciplinary team and access to equipment• When does end of life care start?

Mental health• End of life care for those who lack capacity, such as

those with learning disabilities, dementia and so on• Advanced directives - capacity to consent - do not

assume that mental health services have the necessary skills

• End of life care needs psychological component• Suicide and the effect on bereaved including work

colleagues• Psychological and psychiatric links to end of life care.

Someone from this area should take the lead on end of life care issues for mental health

• Mental health services need access to end of life care services, including skills around managing the bereaved

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Appendix 3Patient Experience

Case study 2AB is 72 and was diagnosed with non small cell carcinomaof the lung. Her husband was 74 and had two previousstrokes and she was his main carer. Her case andtreatment plan were discussed at the cardio thoraciccentre (CTC) multi-disciplinary team meeting in themorning and, later that day, the patient was seen and toldher diagnosis. She then saw the oncology team, whodiscussed treatment options of combined chemo-radiotherapy. She was noted to have pain in her chest andhad been concerned about managing her husband’s careneeds. She was finding it more difficult to cook. She wasoffered the chance to see the specialist palliative careteam at that time for symptom management, which shedid.

The senior occupational therapist and social workerarranged a joint home visit for the following week and shewas linked into the hospice for support.

The multi-disciplinary team was able to plan effectively,with input from appropriate professionals. There was goodcommunication between healthcare professionals andpatient. Timely referral to specialist palliative care team(SPCT) was due to them being part of the multi-disciplinary team. There was also input from hospitalpalliative care, occupational therapist and social worker,who were able to assess patient and husband in their ownhome surroundings.

The palliative care specialist was contracted to work at thehospice and the CTC and this provided close partnershipworking.

There was early referral to hospices services andcommunity SPCT, which were available when required.This cross-boundary working enabled seamless care andthere was multi-professional support for patient andspouse, which helped with advance care planning.

The patient was seen by the specialist palliative carephysician who was able to identify the main concerns,manage symptoms appropriately and link into wider SPCTand hospice services. The patient and her husband wereseen at home by the occupational therapist and socialworker. There was a good level of communication betweenall health care professionals/agencies involved and goodcommunication with patient in giving of significantinformation and advance care planning in a sensitive andsupportive manner.

Case study 1Mary was a 71 year old lady with learning disabilities wholived in sheltered accommodation with another lady withlearning disabilities called Elsie. The two were veryindependent, requiring minimal help from social servicescarers. Mary was diagnosed with inoperable lung cancerand was then referred to the learning disabilities nursingservice to help support her through the initial diagnosis.Mary had an extreme fear of hospitals and healthprofessionals, but she did accept the learning disabilitynurse. The nurse helped to work through the diagnosisand prognosis with Mary, who then expressed a wish notto go to hospital. A PPC document was completed.Mary had good support from both health and social carestaff, who communicated regularly about her care.

The learning disability nurse took on the role of healthfacilitator and supported Mary through the difficultexperience of coming to terms with her diagnosis andprognosis.

The nurse acted as the key worker and co-ordinated careeffectively, eventually getting Mary to accept otherprofessionals such as the district nurse.

The learning disability nurse ensured that Mary had goodaccess to generalist and specialist palliative care servicesand gave appropriate information in a way that wasunderstandable to the client.

Because Mary had a PPC document, this helped facilitateher wishes about where she wanted to die. To illustratethis, at one point in her illness she developedhypercalcaemia and agreed to go to hospital fortreatment. While she was in she developed a chestinfection and the ward staff wanted to keep Mary in, butbecause she had taken her PPC document in with her shewas able to say she wanted to go home. She wastransferred home and died very peacefully with supportfrom all involved in her care.

The completion of the PPC with Mary and the learningdisability nurse allowed Mary to express her fears andconcerns and have her wishes met. It also meant that allthose involved in her care understood what she wanted.

Mary received support throughout her disease from bothhealth and social care staff and this was aided by havingthe nurse as a key worker, introducing timely andappropriate discussions and facilitating theimplementation of the PPC document with Mary. She alsoensured that effective communication took place. Thisalso gave Mary more confidence in her team and she diedat home, where she wanted to be.

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C was well supported by all staff on the unit and hersymptoms were well managed. She died peacefully threeweeks after admission and support was given to herfamily throughout their bereavement.

This case illustrates the benefits of timely referral by thedistrict nurse to the hospice outreach team – the nursewas aware of the home treatment service because oftraining she had received from the specialist palliativecare team, funded by the Department of Health.

Throughout, there was close partnership working betweenall agencies, with initial support in home surroundings andthen a specialist in-patient bed when required. Crossboundary working ensured seamless care and there wasmulti-professional support for all the family throughout C’sillness and their bereavement.

Case study 3C was a 47 year old woman with motor neurone disease.She lived with her husband, and teenage daughter andson. She was diagnosed in October 2006 following a falldue to lower limb weakness. She refused to accept thediagnosis and discharged herself from the neurologist’scare. She had been seen previously by an orthopaedicsurgeon who had suggested surgery for a prolapsed discand so she sought alternative therapies for her perceived‘back problem’ for several months before being referred tohospice outreach therapy team by the district nurse inMay 2007.

The patient and her family were seen at home by theoccupational therapist from the outreach team and theconsultant in palliative medicine to identify main concerns.There was considerable anger within the family followinguncertainty around diagnosis and subsequent reluctanceto engage with neurological services or to accept lifethreatening nature of condition. C was confined to livingupstairs due to paraplegia and refusal to acceptdownstairs adaptations. Her husband carried her up anddownstairs, her children were unaware of diagnosis and Cwas still in denial and requesting treatment to improvepower in her legs. C said if she became quadriplegic shewould commit suicide.

From May to August, C was seen in her own home by theoccupational therapist, physiotherapist andcomplementary therapist each week, developingtherapeutic relationships and increasing acceptance ofand confidence in palliative care services. The hospicephysician carried out several domiciliary visits to monitorpain control and other symptom management.

C gradually accepted reflexology and acupuncture forback pain and agreed to referral to a family supportworker to begin to address issues with the children.Relaxation techniques taught C to alleviate panic attacksand her husband accessed carer support group athospice.

The hospice occupational therapist worked in partnershipwith social services occupational therapist and the motorneurone disease association to facilitate timely provisionof equipment.

Gradually, C began to accept the diagnosis and began totalk about the prognosis and her fears about dying. Shewas afraid of dying at home and the nature of death. Sheexpressed suicidal thoughts, though realised she wouldnot act on these because of her family. She was low inmood as reality of situation became clearer. In September,C agreed to admission to inpatient palliative care forsymptom review and respite for her family. Prior toadmission, she was able to tell her son about herdiagnosis.

On admission to palliative care unit, C was extremelyanxious, but this was relieved by cross boundary workingby the physiotherapist, occupational therapist andcomplementary therapist from the hospice and she wasable to continue therapies on the ward by people shealready knew. Her husband was still able to access thehospice carer support group, the children were being seenby a family support worker and C was helped to prepareletters for her husband and children.

Appendix 4North West Examples of Innovative Practice

The following examples have been taken from ‘Building ofFirm Foundations - Improving end of life care in care homes:examples of innovative practice’, a report that wasproduced by The National Council for Palliative Care. Formore information, visitwww.endoflifecare.nhs.uk/eolc/eolcpublicationsor www.endoflifecareforadults.nhs.uk

Greater ManchesterPalliative care education and information website inManchester

• A new palliative care website has been set up in Manchester to provide 24-hour information and educational resources

• The site includes tutorials, local contact details, referral forms and a bulletin board

Cancer network guidelines for bereavement care inGreater Manchester and Cheshire

• The Greater Manchester and Cheshire network has produced new guidelines for bereavement care

• The guidelines have been sent to all chief executives of hospices and trusts

• Bereavement is now on local strategy groups’ agenda and has been included in local delivery plans

Introducing the Gold Standards Framework andLiverpool Care Pathway to health care professionals inTameside and Glossop PCT

• Tameside and Glossop PCT has introduced the Gold Standards Framework and Liverpool care pathway to most practices, all district nursing services and two nursing homes in the last 18 months

• Early results suggest this has cut hospital admissions and increased patient choice about end of life care

Using end of life care tools in the nursing care home - adeveloping model for education and sustainability inSalford and Trafford PCTs

• Facilitators in Salford and Trafford PCTs are supporting staff in nursing care homes to use end of life care tools

• So far, staff in eight homes have been trained with another 22 due to follow by 2012

• Staff who have had the training feel more confident about advanced care planning and symptom control

Respite palliative homecare teams in Salford and Trafford

• Respite palliative care teams in Salford and Trafford have ensured that 80% of those visited are able to die at home

• Before the teams were established, only 21% of cancer patients were dying at home

• The teams now provide care for patients and carers during the last year of life

• Increased uptake among non-cancer patients is now a priority

Improving end of life care for individuals with dementiain the North West

• Five pilot sites in the North West are introducing the Gold Standards Framework for people with dementia

• It has not always been possible to persuade GPs to prescribe in advance

• Following discussion and the use of the end of life care tools, staff have learnt that each person has their own beliefs and wishes and these should be respected even when different from their own

Using end of life care tools in the care/nursing home adeveloping model for education and sustainability

• A project was set up to provide staff working in care homes (nursing), with the skills and support to effectively utilise end of life care tool, incorporating a model of sustainability

• Facilitators within Salford and Trafford PCTs supported three care homes to take part in an end of life care pilot study in 2006 and through a lessons learned approach, three key themes have emerged:

- Motivated and skilled change agents are needed in order to sustain the effective use of end of life care tools

- Views of care homes staff support the notion that the three end of life care tools compliment each other

- A model of education and sustainability is required that will ensure best use of time and resources

End of life care and the ambulance service - an integrated approach in North West Ambulance Service NHS Trust

• Ambulance staff in Oldham are testing out a standardised DNAR form for palliative care patients

• The decision not to resuscitate could be applied where the patient has indicated this to be their wish; appropriate treatment options have already been exhausted; or where the quality of life following resuscitation would be unacceptable

Cheshire and Merseyside

Meet and greet supported discharge scheme forpalliative patients

• Marie Curie has developed a ‘meet and greet’ supported discharge scheme for palliative care patients returning home

• The nurse remains with the patient for an agreed length of time before the district nurse takes over

• The scheme has proved popular with both health care professionals and carers

Using a joint organisation approach to facilitate theimplementation of end of life tools in Cheshire Hospice’seducation programme

• An education body is working in partnership with the local PCT to increase the use of end of life tools among care staff in Cheshire

• The aim is to increase use by a minimum of 50% and tomatch or exceed national figures

Developing a LINK nurse scheme to improve end of lifecare

• A LINK nurse system was developed for 27 care/nursing homes in West Lancashire, Southport and Formby

• The aim is to develop closer links with

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care/nursing homes, increase staff confidence and extend the use of the care pathway for the dying to all expected deaths

East Cheshire Crossroads Macmillan palliative careservice

• East Cheshire Crossroads Macmillan palliative care service is helping carers to ensure their relatives are able to die at home if they wish to

• The team of 10 trained support workers offers a 9am to4.30pm service every week day and aims to respond to all referrals within 36 hours

• Future plans include extending the service to children and people with dementia and offering overnight respite breaks and some weekend cover

Cumbria and Lancashire

Introduction of end of life care tools to improve care atRisedale Estates

• All Risedale Estates homes implemented the GSF, LCP and PPC tools

• Residents say they feel more in control; staff are more confident and knowledgeable

• The Liverpool care pathway has enabled nurses to discontinue inappropriate procedures in the last 48 hours of life and concentrate on ensuring the last hours are comfortable and peaceful for residents and families

Educational approach to care/nursing homes inLancashire and South Cumbria

• Many district nurses blocked difficult conversations withdying patients

• A free interactive workshop is giving staff new skills and greater confidence

Model of care covering palliative patients’ health andsocial care needs in Lancashire

• A seamless health and social care service now operatesin East Lancashire to help all palliative care patients whoare expected to die in the next six months

• Since the service started, 70% of those referred have died at home and only 13% in hospital

North Cumbria Palliative Care website in North Cumbria

• Palliative care specialists in North Cumbria have developed a website to help isolated GPs offer support to people dying at home

• More people die at home in North Cumbria than nationally

• The website has proved extremely popular.

Developing a network of palliative care link workers incare homes and domiciliary care in Morecambe Bay

• A network of palliative care link workers has been established in care homes and domiciliary care agenciesacross Lancaster. The aim is to share information about best practice in end of life care with generic staff and to develop closer links between these care workers and the local palliative care team. This initiative has been ledby Lancashire County Council Adult and Community Services Directorate and the St John’s Hospice in Lancaster.

Appendix 5Glossary of Terms

ACP - Advance Care Planning

CPD - Continuing Professional Development

CSCI - Commission for Social Care Inspection

CTC - Cardio Thoracic Centre

DH - Department of Health

EOLC - End of Life Care

GSF - Gold Standards Framework

GP - General Practitioner

HCC - Health Care Commission

IT - Information Technology

ICM - Market Research Company

LA - Local Authority

LCP - Liverpool Care Pathway

LD - Learning Disability

LINKS - Similar to patient advisory service

MCA - Mental Capacity Act

MDT - Multi Disciplinary Team

MND - Motor Neurone Disease

NICE - National Institute for Clinical Excellence

NHS - National Health Service

NW - North West

Organisations - Care Homes, Hospices, Hospitals, PCT’s, Independent and Voluntary sectors and charitable organisations

OT - Occupational Therapist

PCT - Primary Care Trust

Person’s/ Client, Patient, Person with illness People’s - and service user

PPC - Preferred Priorities for Care

QOF - Quality Outcomes Framework

SHA - Strategic Health Authority

SLA - Service Level Agreement

SPCT’s - Specialist Palliative Care Teams

Stakeholders - Staff, patients, carers and so on

VOICES (questionnaire)

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Appendix 6End of Life Care Reference Group Members

Name Role Organisations

Jan Ablett Clinical Psychologist, Palliative Care Marie Curie Cancer Care/

University of Liverpool

Sue Ashcroft - Simpson Admiral Nurse Team Leader Manchester Mental Health & Social Care Trust

Joanna Bayly Physiotherapist, Palliative Care Woodlands Hospice,

University Hospital Aintree Site, Liverpool

Rita Boylan Registered General Nurse The Fountains Nursing Home

Greater Manchester

Melissa Bradshaw Registered General Nurse Westwood Lodge Greater Manchester

Barbara Burkey Chair, Patient and Carer Group Merseyside and Cheshire Cancer Network

Shan Charnock Qualified Assistant Practitioner Hyde Hospital Pennine Care NHS Trust

Community Dementia Team

Hilary Compston Associate Director Cancer Network Greater Manchester & Cheshire Cancer Network

Michael Connolly Macmillan Nurse Consultant Macmillan Team Wythenshawe Hospital

Elaine Cox Staff Nurse The Meadows Pennine Care NHS Trust

Julie Foster Mental Capacity Act Trainer/ East Lancashire PCT

Co-ordinator North West

John Gorman Hospital Chaplain Royal Liverpool and Broadgreen

University Hospitals Trust

Precious Handongwe Registered General Nurse Hyde Nursing Home Greater Manchester

Patricia Hewitt Psychotherapist Rossendale Hospice

Isabel Hill Occupational Therapist, Palliative Care Pennine Acute Hospitals NHS Trust

Mary Hill Speech and Language Therapist Ashton Leigh and Wigan PCT

Simone Isaacs Physiotherapist, Palliative Care Pennine Acute Hospitals NHS Trust

Roisin Kavanagh Dietician, Palliative Care Pennine Acute Hospitals NHS Trust

Pamela Kehoe Admiral Nurse Manchester Mental Health & Social Care Trust

Lynne Kenway Physiotherapist, Palliative Care Pennine Acute Hospitals NHS Trust

Wendy Makin Palliative Care Support Team Christie Hospital NHS Foundation Trust,

Manchester

Blessy Oomen Registered General Nurse Hyde Nursing Home Greater Manchester

Nick Sayer Consultant in Palliative Medicine St. Catherine’s Hospice, Preston

Christine Sutcliffe Social Worker Marie Curie Cancer Care

Liz Thomas Area Manager, Welfare Rights Lancashire Welfare Rights

Tracy Wild Macmillan Lead Palliative Care Nurse Pennine Acute Hospitals NHS Trust

Alison McCarthy Lead Cancer Nurse Pennine Acute Hospitals NHS Trust

Alison Wilkinson Clinical Nurse Specialist Palliative Care Royal Bolton Hospital

Chris Shearin Policy & Knowledge Management & Cumbria PCT

Implementation Lead Senior Commissioner

(Leads on EOLC)

David Waterman Consultant in Palliative Medicine Stockport PCT

Barbara Downes Medical Director/Consultant in Bolton Hospice

Palliative Medicine

Jan Vickers Nurse Consultant for Paediatric Macmillan Team The Royal Liverpool

Palliative Care Children’s NHS Trust

Jill Smith Clinical Nurse Specialist Palliative Care Royal Bolton Hospital

Nuala Roberts Heart Failure Specialist Nurse Royal Bolton Hospital

Siobhan Horton Director of Clinical Services St Luke’s - Hospice Winsford Cheshire

145

Appendix 7Schedule of meetings and outputs required

(Shaded rows denote outputs/deliverables)

Date and time Purpose National or regional

17 September 2007 NW Chairs and facilitators meeting NW

6pm - 8pm, Birchwood, Warrington

18 September National and NW deliberative event NW

All day, Manchester

4 October Chairs and facilitators meeting National

All day, London with Ara Darzi

October National Interim Review published National

24 October Programme steering board NW

30 October Clinical pathway groups meeting NW

All day, Haydock racecourse

30 October, London Planning meeting with DH National

By mid November

(to be arranged by Clinical pathway groups) Clinical pathway groups meeting NW

21 & 22 November National Clinical Summit National

2 days, ExCel, London

27 November NW Clinical Congress NW

All day, JJB Stadium

29 November Clinical pathway groups meeting NW

All day, Reebok Stadium

29 November, Tickled Trout CEO forum for NHS review NW

6 December DH filming care pathways in North West National

14 December First draft output from clinical groups NW

12 December, Reebok Stadium Stakeholder event with voluntary/charitable NW

sector, local authorities and IS

19 December Programme steering board NW

15 January 2008 All day Clinical pathway groups meeting NW

17 January 2008 Lord Darzi and chair of chairs meeting National

24 January National and NW 2nd deliberative event National/NW

End January Second draft output from clinical groups NW

12 February All day Clinical pathway groups meeting NW

February (date tbc) Second National chairs and National

facilitators meeting

Early/mid February Final output from clinical groups NW

March/April Clinical pathway groups reports collated NW

and publication of SHA vision

19 March Programme steering board NW

21 May Programme steering board NW

June Final report published National/NW

constitutional event

Department for Constitutional Affairs (2005) Mental CapacityAct 2005. Chapter 9. London: The Stationery Office.http://opsi.gov.uk/ACTS/acts2005/ukpga_20050009_en_1(Accessed 21 February 2008)

Department of Health (2003a) Building on the best: Choice,responsiveness and equity in the NHS. CM 6079. London:The Stationery Office

Department of Health (2003b) Care homes for older people:national minimum standards and the care homes regulations.3rd ed. Gateway Reference 2003. London: The StationeryOffice http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4005819(Accessed 21 February 2008)

NAME ROLE ORGANISATION

Adrienne Brownrigg End of Life Care Lead - Cumbria & Lancashire NHS Northwest

Anita Roberts Learning & Teaching Lead Marie Curie Palliative Care Institute

Anthony Reynolds Chaplain Leigh/Wigan

Bernie Hardman MacMillan Development Manager (North West Area) Macmillan

Carol Turner Lead Cancer Nurse Blackpool, Fylde & Wyre

Carole Mula Nurse Consultant in Palliative Care Christie FT/ Manchester PCT

Chris Mullen (SHA Lead) Associate Director Workforce Strategy NHS North West

Claire Henry End of Life Care, National Programme Director Department of Health

Craig Frame GP BMA

Diane Barker North West Area Mgr, Marie Curie Cancer Care Marie Curie Cancer Care

Dorothy Phillips Head of Service for Services for Older People Oldham Council Adult &

Assessment, Care Management and Support Community Service

Fiona Murphy Bereavement Donor Co-ordinator Bolton Trust

Hong Tseung GP Halton & St Helens PCT

John Ellershaw (Chair) National Clinical Lead for Spec Palliative Care Univ. of Liverpool

Julie Gorry National Council Palliative Care (North West Area) St John's Hospice

Kim Wrigley End of Life Care Lead - Greater Manchester NHS Northwest

Louise Forman Consultant Palliative Care Lancashire Teaching

Sue McAinsh Project Manager - ELC NHS Northwest

Petula Chatterjee GP Manchester PCT

Ron Hopkins Medical Director Bolton Trust

Stephanie Gomm Consultant in Palliative Care Co-Network Chair Salford Royal Trust

(Deputy Chair)

Steve Barnard Paramedic, Head of Clin. Governance NWAS

Tilley Reid Occupational Therapist, Clinical Manager Clinical Manager, Woodlands Hospice

Tom Fairclough Commissioning Knowsley PCT

Trish Bennett Director of Nursing Liverpool PCT

Yvonne Mpofu RGN The Lakes Care Home,

Greater Manchester

Appendix 8End of life care clinical pathway group members:

146


Department of Health (2004a) Manual for cancer services2004. London: The Stationery Office.http://www.dh.gov.uk/en/Healthcare/NationalServiceFrameworks/Cancer/DH_4135595(Accessed 21 February 2008)

Department of Health (2004b) The single assessmentprocess: guidance for local implementation. GatewayReference 2002. London: The Stationery Office.http://www.dh.gov.uk/en/PublicationsandstatisticsPublications/PublicationsPolicyAndGuidance/DH_4008389(Accessed 21 February 2008)

Department of Health (2005a) National Service Framework forrenal services – part two: chronic kidney disease, acute renalfailure and end of life care. London: The Stationery Office

147

Department of Health (2005b) When a patient dies: adviceon developing bereavement services in the NHS. GatewayReference 5578. London: The Stationery Office.http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyandGuidance/DH_4122191(Accessed 21 February 2008)

Department of Health (2006a) Care and respect in death:good practice guidance for NHS mortuary staff. GatewayReference 6831. London: The Stationery Office.http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4137969(Accessed 21 February 2008)

Department of Health (2006b) Standards for better health.Gateway Reference 6405. London: The Stationery Office

Department of Health (2007a) Cancer reform strategy.Gateway Reference 9092. London: The Stationery Office

Department of Health (2007b) Further developments inmeasuring quality adjusted healthcare output. London: TheStationery Office

Department of Health (2007c) Operating Framework2007/08: PCT baseline review of services for end of life care.Gateway Reference 8116. London: Department of Health.http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_074108(Accessed 21 February 2008)

Department of Health (2007d) World class commissioning:vision. Gateway Reference 8754. London: The StationeryOfficeFeinemann, J (2006) How to have a good death. London:Dorling Kindersley

Great Britain. Carers (Equal Opportunities) Act 2004.Chapter 15. London: The Stationery Office

Henry, C. & Seymour, J. (2007) Advance care planning: aguide for health and social care staff. Gateway Reference7793. London: The Stationery Office

Higginson, I.J. (2003) Priorities and preferences for end of lifecare in England, Wales and Scotland. London: NCHSPCS

International Working Group on Death, Dying & Bereavement(2005) ‘Charter for the normalisation of dying, death andloss: draft statement’ Mortality 10 (2) pp. 157-161

Jones, K. & Bayliss, C. (2007) ‘Integrated NHS and socialcare palliative care at home’ In: Department of Health End ofLife Care – supporting information, data and evidenceSeptember 2007: working draft for clinical chairs version1.0. London: Department of [email protected]@knowsley.gov.uk

Kellehear, A. (2005) Compassionate cities. London: Routledge

Lancashire & South Cumbria Cancer Network (n/d) ‘Thepreferred place of care plan and why it was developed’ Thepreferred place of care plan and why it was developedhttp://www.cancerlancashire.org.uk/ppc.html(Accessed 20 February 2008)

Marie Curie Cancer Care (2008) ‘Delivering choiceprogramme’ Delivering choice programme.http://www.mariecurie.org.uk/forhealthcareprofessionals/deliveringchoiceprogramme/ (Accessed 21 February 2008)

Marie Curie Palliative Care Institute Liverpool (2007) ‘Aboutthe LCP’ Liverpool Care Pathway for the Dying Patient(LCP). http://www.mcpcil.org.uk/liverpool_care_pathway(Accessed 21 February 2008)

National Health Service End of Life Care Programme (2005)‘The Gold Standards Framework: a programme forcommunity palliative care’ The Gold Standards Framework.http://www.goldstandardsframework.nhs.uk(Accessed 20 February 2008)

National Health Service End of Life Care Programme (2007)‘Making change happen: examples of innovative practice’Improving End of Life Care for Adults.http://www.endoflifecareforadults.nhs.uk(Accessed 20 Februrary 2008)

National Health Service North Wwest (2007a) National andNorth West Deliberative Event. Manchester.(18 September 2007)

National Health Service North Wwest (2007b) Stakeholderengagement event. Reebok Stadium, Bolton.(12 December 2007)

National Institute for Clinical Excellence (2004) Improvingsupportive and palliative care for adults with cancer: themanual. London: NICE

Opinion Leader Research (2006) Your health, your care, yoursay – research report. London: Department of Health.http://www.dh.gov.uk/en/PublicationsandstatisticsPublications/PublicationsPolicyAndGuidance/DH_4127357(Accessed 21 February 2008)

Richards, M. (2007) End of life care strategy for adults –emerging themes: paper from the end of life care strategyadvisory board to SHAs workstream leads. London:Department of Health.http://www.networks.nhs.uk/uploads/07/10/eolc_advisory_board_paper_emerging_themes_051007.pdf(Accessed 20 February 2008)

Thomas, K. & Sawkins, N. (2007) Gold StandardsFramework in Care Homes programme: good practiceguide. Walsall: GSF

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