Paths to Personalisation

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PATHS TO PERSONALISATIONIN MENTAL HEALTH

A whole system, whole lie ramework


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2 PATHS TO PERSONALISATION IN MENTAL HEALTH A whole system, whole lie ramework


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THE NATIONAL MENTAL HEALTH DEVELOPMENT UNIT

The National Mental Health Development Unit (NMHDU) is the agency charged with supporting

the implementation o mental health policy in England by the Department o Health in collaboration

with the NHS, Local Authorities and other major stakeholders. Further inormation about the

NMHDU and its programmes o work is available at www.nmhdu.org.uk

NEW HORIZONS

Paths to Personalisation is aligned with the vision and recommendations o New Horizons,

a cross government mental health strategy, published in December 2009. New Horizons is a

comprehensive programme o action or improving the mental well-being o the population and

the services that care or people with poor mental health. It brings together organisations across

national and local Government, voluntary and statutory agencies, as well as local communities and

individuals to work towards a society that values mental well-being as much as physical health.

Further inormation is available at www.newhorizons.dh.gov.uk

DEPARTMENT OF HEALTH PERSONAL HEALTH BUDGETS

PILOT PROGRAMMEThe Department o Healths personal health budgets team works with 73 PCTs, in 66 sites,

who have provisional pilot status as part o the programme. Twenty o these sites have

been selected or an in-depth study, as part o a wider evaluation exploring the potential o

personal health budgets to benet dierent groups o people and how PCTs can make them

work. The pilot programme will run until 2012. Further inormation is available at

www.personalhealthbudgets.org.uk

DEPARTMENT OF HEALTH PUTTING PEOPLE FIRST NATIONALDELIVERY PROGRAMME

The Department o Healths Putting People First national delivery programme works with key

stakeholders across local government, NHS, the third sector and proessional and regulatory

organisations, to support the implementation o the shared vision o Putting People First (DH, 2007),

through a radical reorm o public services enabling people to live their own lives as they wish,

condent that services are o high quality, sae and promote their own individual needs or wellbeingand dignity. Further inormation is available at www.dhcarenetworks.org.uk/Personalisation

THE NATIONAL DEVELOPMENT TEAM ON INCLUSION (NDTI)

The National Development Team or Inclusion is a not or prot organisation concerned with

promoting inclusion and equality or people who risk exclusion and who need support to lead

a ull lie. We have a particular interest in issues around age, disability and mental health. The

NDTi was commissioned to write this ramework on behal o the Department o Health and

the NMHDU. Further inormation is available at www.ndti.org.uk
http://www.nmhdu.org.uk/http://www.newhorizons.dh.gov.uk/http://www.personalhealthbudgets.org.uk/http://www.dhcarenetworks.org.uk/Personalisationhttp://www.ndti.org.uk/http://www.ndti.org.uk/http://www.dhcarenetworks.org.uk/Personalisationhttp://www.personalhealthbudgets.org.uk/http://www.newhorizons.dh.gov.uk/http://www.nmhdu.org.uk/


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5

INTRODUCTION 4

Who and what is this ramework or? 4

What is personalisation? 5

A whole system, whole lie ramework or personalisation

in mental health 6

SECTION 1: 8

HELPFUL, PERSON-CENTRED SYSTEMS AND APPROACHES

The systems I use support me to make my own decisions. People

listen to me and treat me with respect.

SECTION 2: 10

INFORMATION AND ADVICE, PERSONAL MOTIVATION

AND SELF-HELP

I have opportunities or sel-help and taking control. I have

the inormation and advice I need to eel empowered and

make choices.

SECTION 3: 12

SUPPORT FOR MANAGING PERSONAL BUDGETS

All the things are in place that can help me comortably managethe resources allocated to me, in a way that suits me.

SECTION 4: 15

SUPPORT FOR CARERS

I get the support I need to carry out my caring role, stay well and

live my own lie.

SECTION 5: 19

FAIR ACCESS AND EQUALITY

Opportunities are available to me without discrimination

or unairness

SECTION 6: 22

CREATIVE COMMISSIONING

There is opportunity, choice and innovation in what is available

to support me and give me a good quality o lie.

SECTION 7: 27PARTNERSHIP FOR INCLUSION

My needs are met in a way that is easy or me. I get the support

I need to participate as a citizen and take advantage o the things

available to all.

SECTION 8: 33

PREVENTION AND EARLY INTERVENTION

I get help and advice about how to stay well. Support and help

are available to me and my amily at an early stage i I begin to

eel unwell or things go wrong.

SECTION 9: 35

GOOD LEADERSHIP FOR ALL

I can have a leadership role and there is good leadership

wherever it is needed.

SECTION 10: 37

WORKFORCE AND ORGANIZATION DEVELOPMENT

The people who are paid to provide me with support and

treatment have the right skills and approach and are available

when I need them.

SECTION 11: 40

STORIES AND PERSONAL ACCOUNTS

SECTION 12: 41

REFERENCES

SECTION 13: 43

OUTCOMES AND QUALITY FRAMEWORK

CONTENTS


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INTRODUCTION

WHO AND WHAT IS THIS FRAMEWORK FOR?

This guide has been produced to help all those involved understand how things willneed to be done dierently to make personalisation a reality or people with mental

health needs. This is a whole system guide, so hopeully it will give some inormation,

guidance and signposts or people, whoever and wherever they are. The guide provides

inormation about what personalisation means or mental health services and supports,

oers examples o what needs to be in place to make things work, and provides

pointers to good practice and sources o advice and inormation.

There should be something o interest or useul links to be ollowed up, or example or

people with mental health needs and carers (particularly i they are in expert partner

roles) health and social care commissioners, providers, practitioners, care co-ordinators

and sta rom all sectors universal services community groups senior managers

board and elected members enthusiasts, advocates and leaders. It is also intended

to help people look across the system to recognise all the things that need to t well

together in partnership or a personalised approach.

The ramework has been developed and tested with the help o an expert group,

including people who use or have used mental health services. It starts rom the point

o view and perspective o someone with mental health needs and considers the range

and nature o things that need to be in place. The rst person statements, ormed

with the help o the group, are designed to consider the question What helps to make

this happen? The group elt that this approach would help ocus attention on what

needs to be in place to achieve the right outcomes or people, and on peoples real

experiences o systems and services. These statements also provide a whole systemquality checklist or personalisation (See Appendix 1).

The Signposts part o each section provides links to urther reading, websites,

examples and urther resources.


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There has been a gathering policy momentum leading to local authority

and health service reorm. A undamental re-think o the relationship

between citizens and public services runs through, or example, Improving

the Lie Chances o Disabled People1, Our Health, Our Care, Our Say2,

Putting People First3, and NHS Next Stage Review4.

The main messages are very clear. We should expect a personalised

approach, which means a relationship with public services which

ensures that:

We are empowered to have more say and control in all aspects o

public lie and participate as active and equal citizens

We have maximum control o our own lives, including control o our

own health and health care

We are supported to live independently, stay healthy and recover quickly

We have choice and control so that any support we may need ts the

way we wish to live our lives.

One way o giving us more control over the support we may need is to

allocate an amount o money (a personal or individual budget or direct

payment) so that we can decide ourselves how it can best be used. (For

more inormation about personal budgetssee Section 3). Having access

to personal budgets has undoubtedly led to very positive outcomes or

some people. An Individual Budgets Pilot Programme (IBSEN) took place

in England in 13 local authorities and has now been evaluated. The

evaluation report5 ound that having an individual budget was associated

with better outcomes and higher perceived levels o control and peoplehad more positive aspirations or their lives. Specic benets or people

with mental health needs were reported. However, the report also

highlighted major barriers to take up or people with mental health needs.

Research on Direct Payments also shows that they are least commonly

provided to people with mental health needs6.

WHAT IS PERSONALISATION?

Direct payments or people with mental health problems: A guide to

action7sets out good practice in making direct payments more accessible

to people with mental health needs. This guide ollows on and places

personal budgets in a wider context.

Money by itsel does not guarantee choice or control. It is clear that i

opportunities are to be more generally available to people with mental

health needs and not just a battle won here and there (relying on good

luck and a ew right thinking people) there need to be radical changes

that will place personal budgets in the wider context o personalisation.

Personalisation means recognising and respecting us as individual citizens,

amily members and members o our community with the inormal

networks that provide most o our support, most o the time. It cannot

be achieved without an energetic and eective partnership approach

between and beyond health and social care. It requires partnership that

concerns itsel with improving the lie and health o all citizens, andremoving barriers so that there is access or all to activities, services and

opportunities. This is an approach requiring comprehensive cultural and

organisational changes to encourage creativity, innovation, positive risk

taking and to change the balance o power between citizens and public

services. The IBSEN evaluation reported cultural and organisational

barriers in these areas, particularly in mental health, that will need to be

addressed to make any real impact on the way many people with mental

health needs currently experience public services.

Personalisation? I know this is happening when I am treated with warmth, respect

and honesty when people listen to me, treat me as an equal, and support me andwhen I dont have to ght all the time to get what I want to help me recover and livemy lie the way I choose to.

Mental health expert by experience


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This guide describes the wide range o things that need to be in place

or a personalisation approach to be a common experience, not an

exceptional one, or people with mental health needs. It proposes a whole

system approach, looking at the way dierent elements and strands

o activity work together and impact on one another to achieve better

outcomes or people.

What people know and eel to be right sometimes gets lost in translation

when ltered through the systems set up, in good aith, to provide help

and support. However, it has always been the case that determined

individuals, sta and people using services, have managed to just get on

and make the right things happen. This oten involves working round

processes and systems and the prevailing culture in order to do something

dierent that meets an individuals unique and particular needs.

A whole system approach, looking at all the things that need to be

in place, does not mean that people should stop driving ahead or

individual successes while they wait or everything to be xed. It simply

acknowledges that we can only get so ar, or a limited number o people,

i we do not make progress on all the cultural and organisational changes

that need to take place so that everyone can benet as a matter o right

and common practice.

This ramework is only a guide and is not comprehensive. Like most

rameworks, there is not a perect t or all the sections, they are all

connected and there are overlaps. The aim o this ramework is to provide

a tool to start checking what needs to be in place or personalisation

in mental health, and planning what action can be taken to ensure

that it is. It highlights the need or rereshed and energetic partnership

and collaboration across the whole system. The ramework will be

urther developed to take account o learning rom the experience o

implementing personalisation as it progresses.

Anita Cameron

A WHOLE SYSTEM, WHOLE LIFEFRAMEWORK FOR PERSONALISATIONIN MENTAL HEALTH


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I am in control o the support I need to live my lie the way I want to.

What helps to make this happen?

A whole system ramework or personalisation in Mental Health

I have opportunities or sel-help and taking control.

I have the inormation and advice I need to eel

empowered and make choices

There is opportunity, choice and innovation in what

is available to support me and give me a good quality

o lie.

All the things are in place that can help

me comortably manage the resources

allocated to me, in a way that suits me.

My needs are met in a way that is easy or

me. I get the support I need to participate

as a citizen and take advantage o the

things available to all.

I can have a leadership role and there is

good leadership wherever it is needed.

Opportunities are available to me without

discrimination or unairness.

I get the support I need to carry out my

caing role, stay well and live my own lie.

The people who are paid to provide me with support

and treatment have the right skills and approach, and

are available when I need them.

I get help and advice about how to stay well. Support

and help are available to me and my amily at an early

stage i I begin to eel unwell or things go wrong.

Inormation and advice,

personal motivation and

sel-help

Creative Commissioning

Workorce and

organisation development

Prevention and

early intervention

Helpul, person-centredsystems and approaches

The systems I use support me to make my own decisions.People listen to me and treat me with respect.

Support or managing

personal budgets.

Good leadership or all

Fair access and equality

Support or carers

Partnership or inclusion


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From the very rst contact by phone, on line, personal

visit, or meeting the messages that individuals or their

riends or amily members receive will have an impact

on the way they eel about themselves and on the way

they engage with organisations and proessionals. A

personalised approach will be evident in the language,attitudes and behaviour on initial contact and in all the

processes that people go through. The simple test or this

is to ask How would I eel i this was what I, or a member

o my amily, experienced?

Person centred approaches were promoted through Valuing People

(DH, 2001)43 or people with learning disabilities. The guidance produced

to support the development o person centred approaches denes the

term as: activities which are based upon what is important to a person

rom their own perspective and which contribute to their ull inclusion

in society Person centred planning is a process or continual listening

and learning, ocusing on what is important to someonenow and in theuture, and acting upon this in alliance with their amily and riends.

(DH, 2001)43.

Putting People First3 highlights the intention or these approaches to be

used across the board and or Person centred planning and sel directed

support to become mainstream.

I have a good experience when I rst seek inormation, help or support.

I am treated in a respectul way that leads to the right outcomes or me.

People have a sense o being respected i they experience:

A recovery approach that treats people as equal partners with the hope

and expectation o a ullled lie

Assessment and sel-assessment that is a set o personalisation

principles, not just a document, and takes account o varied

experiences, backgrounds and complexity o need

Assessment that ocuses on what matters to people and what works

or does not work or them

Co-production as the everyday approach: this means people working

in partnership with their amily, carers and proessionals to plan,

develop, arrange or purchase the services and support that are

appropriate to them

Person centred planning and reviews that put people in control and

equip and empower them to make decisions about their own support

and recovery

People who genuinely listen and go at a pace that suits the person they

are supporting: this will be refected in outcomes and how close they

are to what people want or themselves

An integrated system that responds to peoples diverse roles and needs

(e.g. health, amily, parenting, relationships, housing, employment,

leisure, education) and does not only ocus on times when people

are unwell (For more detail see under Partnership section 7)

The right and appropriate support to help people be prepared and

ready to take control and to plan or their own recovery.

People I come into contact with have the right approach and skills

to treat me respectully, help me recover and live my lie the way I

choose to.

Examples o what needs to be in place to support this:

A culture that systematically promotes and nurtures the right

approaches and skills with all new sta routinely inducted into

person-centred approaches and person centred thinking

Senior management commitment and enthusiasm to get the

culture right

Clarity about resources or training in person-centred systems,approaches and person centred thinking (including or senior managers)

and or developing good inormation and communications

Learning and problem solving encouraged and built in to systems

Clear local and government support or innovation and creative use o

processes, practice and resources so that sta are condent that this

is a recognised and endorsed way o working (See also Workorce and

Organisation Development section 10).

SECTION 1

HELPFUL, PERSON-CENTRED SYSTEMSAND APPROACHES

THE SYSTEMS I USESUPPORT ME TO MAKEMY OWN DECISIONS.

PEOPLE LISTEN TO ME ANDTREAT ME WITH RESPECT

WHAT HELPS TO MAKETHIS HAPPEN?


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There is a planned and balanced approach

to crisis and risk that I eel condent in and

that does not undermine my sense o being in

control o my lie and recovery.

Getting the balance right between creativity,

personal control, aspiration and positive riskmanagement is a key challenge to address or

personalisation. Risk is something we all live

with every day and is an important part o

opportunity and change but responses to this in

services can sometimes result in over-restrictive

practices. On the other hand, signicant risk,

or example o sel-harm or harm to others,

needs to be acknowledged and worked with in

a responsible way.

Although the IBSEN evaluation5 o the Individual

Budget Pilots did not demonstrate any increased

risk to or by people using individual budgets,

it did report concerns raised by care, social

work and adult saeguarding sta around the

possible risks o nancial abuse, neglect and

physical harm. Balanced against this is the

evidence o people with mental health needs

using individual budgets reporting a higher

quality o lie and a possible tendency towards

better psychological wellbeing (SCIE, March

2009)8and evidence rom international research

that people using sel-directed support instead

o traditional services are generally more likely

to report improved outcomes and satisaction(SCIE, March 2009)8.

Examples o things that will help achieve

this balance:

Advance directive and crisis planning and

day to day person-centred risk management

that is taken seriously so that people are

condent that action will be taken with due

regard to their plans and wishes

Recognition that peoples needs are not

constant and any risk agreements should be

regularly reviewed and subject to change

Activity that promotes a positive risk tak ing

culture in organisations, or example:

involving people in developing a Choice,

Empowerment and Risk policy, training or

all, and support rom senior managers so that

sta eel condent about this approach

Sel-regulation, with investment in resourcesto oer peer support and share eedback

about, or example, peoples experiences o

providers and personal assistants

Involvement o people in setting up and

carrying out quality assurance activities

Sucient time spent with people to help

them design support that will be based on

their choices and wishes, whilst recognising

those risks that can be reduced

Acknowledgement o carers needs and wishes

and the sensitive balance o support or the

rights o all involved.

SIGNPOSTS

Care Programme Approach and Assessment

1. Wellness Recovery and Action Plan, A practical approach to recovery.

www.workingtogetherorrecovery.co.uk/Documents/Wellness%20Recovery%20Action%20Plan.pd

2. 3 Keys to a Shared Approach in mental health assessment, CSIP/NIMHE, 2008

www.3keys.org.uk

3. Re-ocusing the Care Programme Approach: Policy and Positive Practice Guidance , DH, March 2008.

www.dh.gov.uk/publications

4. Eective Care Co-ordination in Mental Health services: Modernising the CPA: A policy booklet.

(DH, 2000)www.dh.gov.uk/publications

Positive Risk Taking and Risk Management

5. DH, Independence, Choice and risk: a guide to best practice in supported decision makingDH, 2007

Best practice guide, learning and development materials, supported decision making tool, leafet or

people using services. http://socialcare.csip.org.uk/index.cm?pid=6

6. Person centred riskA course or senior managers, rst line managers, amily members and carers andsupport workers.www.helensandersonassociates.co.uk

7. Risk enablement and personalisation project. DH Social Inclusion [email protected]

8. Positive Risk Taking Policy: Gateshead Councils Community Based Services An example o a policy that

has been developed to ensure that there is a consistent approach to the identication, assessment and

management o risk across services.www.scie-socialcareonline.org.uk/prole.asp?guid=4225c224-

60eb-48e-837b-c6c44172cb80

9. Clinical Risk Management: A clinical and practitioner manual,Steve Morgan, Sainsbury Centre or

Mental Health, 200. www.scmh.org.uk/pds/clinical_risk_management.pdwebsite

Person-centred approaches

10. Person-centred thinking with people who use mental health services,Helen Sanderson Associates

with David Coyle, University o Chester (2005).www.helensandersonassociates.co.uk/PDFs/

MHminibookweb.pd

11. Our choices in mental health, CSIP A ramework or providers to extend choices and practical support.

www.mhchoice.csip.org.uk

12. Supporting People with Long Term Conditions(Re: Statement o values and principles o care

planning. P12).www.dh.gov.uk/en/Publicationsandstatistics/Publications/

PublicationsPolicyAndGuidance/DH_4100252

13. Co-production: an emerging evidence base or adult social care transormation: SCIE Research

Briefng 31,2009.www.scie.org.uk/publications/briengs/brieng31/index.asp

14. Website with support planning resources.www.supportplanning.org/MentalHealth/
http://www.workingtogetherforrecovery.co.uk/Documents/Wellness%20Recovery%20Action%20Plan.pdfhttp://www.3keys.org.uk/http://www.dh.gov.uk/publicationshttp://www.dh.gov.uk/publicationshttp://socialcare.csip.org.uk/index.cfm?pid=6http://www.helensandersonassociates.co.uk/mailto:[email protected]://www.scie-socialcareonline.org.uk/profile.asp?guid=4225c224-60eb-48fe-837b-c6c44172cb80http://www.scie-socialcareonline.org.uk/profile.asp?guid=4225c224-60eb-48fe-837b-c6c44172cb80http://www.scmh.org.uk/pdfs/clinical_risk_management.pdfwebsitehttp://www.helensandersonassociates.co.uk/PDFs/MHminibookweb.pdfhttp://www.helensandersonassociates.co.uk/PDFs/MHminibookweb.pdfhttp://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4100252http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4100252http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4100252http://www.supportplanning.org/MentalHealthhttp://www.supportplanning.org/MentalHealthhttp://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4100252http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4100252http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4100252http://www.helensandersonassociates.co.uk/PDFs/MHminibookweb.pdfhttp://www.helensandersonassociates.co.uk/PDFs/MHminibookweb.pdfhttp://www.scmh.org.uk/pdfs/clinical_risk_management.pdfwebsitehttp://www.scie-socialcareonline.org.uk/profile.asp?guid=4225c224-60eb-48fe-837b-c6c44172cb80http://www.scie-socialcareonline.org.uk/profile.asp?guid=4225c224-60eb-48fe-837b-c6c44172cb80mailto:[email protected]://www.helensandersonassociates.co.uk/http://socialcare.csip.org.uk/index.cfm?pid=6http://www.dh.gov.uk/publicationshttp://www.dh.gov.uk/publicationshttp://www.3keys.org.uk/http://www.workingtogetherforrecovery.co.uk/Documents/Wellness%20Recovery%20Action%20Plan.pdf


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12 SECTION 2: INFORMATION AND ADVICE, PERSONAL MOTIVATION AND SELF-HELP

I have the opportunity to improve my knowledge o my mental health

and sel care options.

Sel care means having the opportunity to be responsible or your own

health and to make the most o lie and eel ullled.

Examples o things that help with this:

Access to local Expert Patient Programmes. These are sel-managementcourses giving people the condence, skills and knowledge to manage

their condition and be more in control o their lives

Support to develop a personalised sel-care plan or support plan

Inormation about, and access to, tools and assistive technology

(such as touch sensors) that could help people sel manage

Health and social care policies and sta guides about sel-care

Promotion o the role that pharmacies can have in providing sel-care

support with managing symptoms and medication

Accessible inormation about mental health diagnoses and treatmentoptions is available and oered to all

Inormation about mainstream activities in the community is made

available at the same time as inormation about more specialist supports

and services.

I can easily nd the inormation I need about a wide range o things that

are available in my locality.

Some people will already be clear what they want to help them live their

lives and know where to nd it. Other people will need dierent kinds

o help and inormation to see what opportunities there are and what

options they might have beyond their immediate knowledge o services.

This might be about where to get help or to take up activities in the

wider community (such as leisure activities, employment, or learning).

The power to change things can be limited by lack o inormation. Even

i you are clear about what you want, it can be very time consuming

and exhausting searching or how and where to nd it. This is

particularly dicult or anyone who does not speak English, or who has

communication or literacy diculties (or more inormation see section

on Fairness and Equality section 5) Anyone working with people to

help them put together support plans will also need reliable, easy to get

at, inormation.


Partnership work within local authorities, across library and inormation

services and social care services, to plan or and manage the inormationneeds o all

Websites designed specically to provide inormation or people putting

together support plans

Access to inormation technology and specic training and support

to use it

Dedicated sta who are trained and ava ilable to help people use

computers and access the internet

Support or local networks and peer groups or the inormal exchange

o inormationMeetings and discussion groups on a planned and continuous basis

not just one-o opportunities so that there is a regular opportunity

or people to ask questions and be given up to date inormation

Use o local radio, community broadcasting and satellite channels that

are designed or dierent communities and audiences

Inormation available very locally e.g in local shops, pubs and GP surgeries

Inormation related to times in peoples lives when help is needed

Involving people with mental health needs in the design,

implementation and evaluation o inormation services

Making sure that providers are clear about their responsibility to

provide inormation

Undertaking research into what really gets inormation to people

Co-coordinating and managing inormation and knowledge that is

held by service users, sta, organisations and communities.

SECTION 2

INFORMATION ANDADVICE, PERSONALMOTIVATION ANDSELF-HELP

I HAVE OPPORTUNITIESFOR SELF-HELP ANDTAKING CONTROL

I HAVE THE INFORMATIONI NEED TO FEEL EMPOWEREDAND MAKE CHOICES



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Self care and self help

1. Sel Care Connect. A website with inormation on courses and materials, actsand gures and a support network. www.sel-careconnect.co.uk

2. For research evidence on sel care. www.dh.gov.uk/selcare

3. Common core principles to support sel care: a guide to supportimplementation, Skills or Care/Skills or Health, 2008. www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084505

4. Department o Health,Sel Care A real Choice: Sel-care support APractical Option (2005) Practical ideas and action on how to supportsel care. www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4100717

5. The sel care challenge: A strategy or pharmacists in EnglandThe RoyalPharmaceutical Society o Great Britain (2006). www.rpsgb.org.uk

6. Inormation about the Expert Patients Programme. www.expertpatients.nhs.uk

7. Sel care training or people with bipolar disorderwww.md.org.uk. A peer ledsel care training programme to help people learn to take action to prevent orreduce the severity o an episode.

8. HealthSpace is a ree, secure online personal health organiser. It providesinormation to help people to manage their own health, store important healthinormation securely, or nd out about local NHS services. www.healthspace.nhs.uk/visitor/deault.aspx

9. HUBB ( Barking and Havering and Brentwood Mental Health User Group) havedeveloped Recovery Plan and Well Being Plan booklets and Recovery courses inpartnership with the local PCT. [email protected]

10. A voice and a choice: Sel directed support by people with mental healthproblems: A discussion paperRita K Brewis, In Control, 2007. www.in-control.org.uk/site/INCO/Templates/Library.aspx?pageid=331&cc=GB

11.Sel-directed support or mental health service users in West Sussex: Project

Evaluation Report, Rogers R , 2007 West Sussex County Council/WestSussex PCT. www.communitycare.co.uk/Articles/2008/06/26/108631/personalisation-sel-directed-support-in-west-sussex.html

12.Mental Health and Personalisation Agenda: Chaos or empowermentA projectto keep people inormed and infuence the way change towards personalisationhappens in the North East. This website also has links to a range o resourcesabout personalisation. www.mhne.co.uk/pge.asp?id=40

Enthusiasts and advocates

13. The National Advocacy Qualication is a qualication that has been unded anddeveloped by the Department o Health, together with advocacy organisationsand commissioners over the past two years. The introduction o two ormso statutory advocacy, Independent Mental Capacity Advocates (IMCAs) andIndependent Mental Health Advocates (IMHAs) led to the recognition o theneed or greater ocus on quality and consistency across the advocacy sector.www.nmhdu.org.uk/our-work/improving-mental-health-care-pathways/

independant-mental-health-advocacy

14. Transorming adult social care: access to inormation, advice and advocacy,IdEA, 2009. www.idea.gov.uk/idk/core/page.do?pageId=9454439

15. A lesbian and gay, bisexual and transgender mental health advocacy service.www.pacehealth.org.uk/mental_health_advocacy/

16. Independent mental health advocacy: Guidance or commissioners NIMHE,2008. This guide outlines the statutory independent mental health advocacy roleand discusses good practice or IMHA services and recommended commissioningprocesses.www.mhact.csip.org.uk/silo/les/imha-guidance-or-commissioners.pd

17.Mental health advocacy or black and ethnic minority mental health usersand carers, 2002, Joseph Rowntree Foundation. www.jr.org.uk/publications/mental-health-advocacy-black-and-minority-ethnic-users-and-carers

One stop shop and on-line information

18. Leicestershire County Council provides a website giving inormation to helppeople be independent and make their own decisions. The service includesa team to provide support and training or people with little or no previousexperience or particular diculties in using a computer.www.leicscareonline.org.uk

19. Shop4Support is a website that provides inormation or people developing theirown support plans and or those managing their own budgets. It is an internetmarket place with inormation about support providers and services with aquality rating and eedback acility or people using them. It also provides readymade systems or managing budgets etc. www.shop4support.com

Accessible information

20. The Association o Social Care Communicators aims to develop and improvecommunication practice. It has a useul website with practical inormation,regional groups, networks, and a newsletter and runs conerences.www.ascc.me.uk

TV, video and roadshows

21.Southwark TV: Web based community media or all including mental healthgroups. www.southwark.tv

22. Community TV: TrustOers consultation, training, acilitation and production.www.communitytvtrust.org

23.Social care TV: A broadband service on the SCIE website called Social Care TV,that has short videos relating to e.g. personalisation, dementia, mental health.www.scie-sctv.org.uk

24. NHS South East Coast regional roadshows. www.southeastcoast.nhs.uk/news/

Makingchoicespersonalisingcare.asp

SIGNPOSTS

There are people around who really want to

help me ull my dreams and potential.


Enthusiasts, supporters and advocates who

are positive and have high expectations and

encourage people to be hopeul and see a

positive uture

Inspirational gures, community

entrepreneurs, mentors or leaders who

work actively in their communities and

organisations to promote mental health sel-

care and recovery

Systematic organisation development

programmes to promote a culture o positive

approaches to mental health.
http://www.self-careconnect.co.uk/http://www.dh.gov.uk/selfcarehttp://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084505http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084505http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084505http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4100717http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4100717http://www.rpsgb.org.uk/http://www.expertpatients.nhs.uk/http://www.mdf.org.uk/http://www.healthspace.nhs.uk/visitor/default.aspxhttp://www.healthspace.nhs.uk/visitor/default.aspxmailto:[email protected]://www.in-control.org.uk/site/INCO/Templates/Library.aspx?pageid=331&cc=GBhttp://www.in-control.org.uk/site/INCO/Templates/Library.aspx?pageid=331&cc=GBhttp://www.communitycare.co.uk/Articles/2008/06/26/108631/personalisation-self-directed-support-in-west-sussex.htmlhttp://www.communitycare.co.uk/Articles/2008/06/26/108631/personalisation-self-directed-support-in-west-sussex.htmlhttp://www.mhne.co.uk/pge.asp?id=40http://www.nmhdu.org.uk/our-work/improving-mental-health-care-pathways/independant-mental-health-advocacyhttp://www.nmhdu.org.uk/our-work/improving-mental-health-care-pathways/independant-mental-health-advocacyhttp://www.idea.gov.uk/idk/core/page.do?pageId=9454439http://www.pacehealth.org.uk/mental_health_advocacy/http://www.mhact.csip.org.uk/silo/files/imha-guidance-for-commissioners.pdfhttp://www.mhact.csip.org.uk/silo/files/imha-guidance-for-commissioners.pdfhttp://www.jrf.org.uk/publications/mental-health-advocacy-black-and-minority-ethnic-users-and-carershttp://www.jrf.org.uk/publications/mental-health-advocacy-black-and-minority-ethnic-users-and-carershttp://www.leicscareonline.org.uk/http://www.shop4support.com/http://www.ascc.me.uk/http://www.southwark.tv/http://www.communitytvtrust.org/http://www.scie-sctv.org.uk/http://www.southeastcoast.nhs.uk/news/Makingchoicespersonalisingcare.asphttp://www.southeastcoast.nhs.uk/news/Makingchoicespersonalisingcare.asphttp://www.southeastcoast.nhs.uk/news/Makingchoicespersonalisingcare.asphttp://www.southeastcoast.nhs.uk/news/Makingchoicespersonalisingcare.asphttp://www.scie-sctv.org.uk/http://www.communitytvtrust.org/http://www.southwark.tv/http://www.ascc.me.uk/http://www.shop4support.com/http://www.leicscareonline.org.uk/http://www.jrf.org.uk/publications/mental-health-advocacy-black-and-minority-ethnic-users-and-carershttp://www.jrf.org.uk/publications/mental-health-advocacy-black-and-minority-ethnic-users-and-carershttp://www.mhact.csip.org.uk/silo/files/imha-guidance-for-commissioners.pdfhttp://www.pacehealth.org.uk/mental_health_advocacy/http://www.idea.gov.uk/idk/core/page.do?pageId=9454439http://www.nmhdu.org.uk/our-work/improving-mental-health-care-pathways/independant-mental-health-advocacyhttp://www.nmhdu.org.uk/our-work/improving-mental-health-care-pathways/independant-mental-health-advocacyhttp://www.mhne.co.uk/pge.asp?id=40http://www.communitycare.co.uk/Articles/2008/06/26/108631/personalisation-self-directed-support-in-west-sussex.htmlhttp://www.communitycare.co.uk/Articles/2008/06/26/108631/personalisation-self-directed-support-in-west-sussex.htmlhttp://www.in-control.org.uk/site/INCO/Templates/Library.aspx?pageid=331&cc=GBhttp://www.in-control.org.uk/site/INCO/Templates/Library.aspx?pageid=331&cc=GBmailto:[email protected]://www.healthspace.nhs.uk/visitor/default.aspxhttp://www.healthspace.nhs.uk/visitor/default.aspxhttp://www.mdf.org.uk/http://www.expertpatients.nhs.uk/http://www.rpsgb.org.uk/http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4100717http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4100717http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084505http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084505http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084505http://www.dh.gov.uk/selfcarehttp://www.self-careconnect.co.uk/


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A personal budget can come in dierent orms and

be managed in dierent ways. It can be a cash, direct

payment or notional budget. Someone can manage a

budget themselves, and employ their own sta and directly

purchase what they need, or someone else (or example

an individual, agency, trust or provider) can do this on their

behal. A personal budget may be unded solely rom alocal authority or rom a combination o sources such as the

Independent Living Fund or Supporting People. The NHS

can also allocate a notional personal health budget, which,

with changes in legislation, may in the uture also come as

a cash payment. However people choose to manage their

personal budget, the idea is that they are encouraged to put

together a support plan to meet the personal outcomes they

want in their lives, and have maximum control over how the

plan is put into action.

I get clear inormation that tells me what a personal budget is and the

dierent ways o using it.

I get support to decide which is the best option or me.

Lack o inormation, or conusing inormation, can stop people taking

advantage o opportunities or greater control. For example:

People are concerned because they believe that having a personal

budget means that they have to take on responsibility or employing

sta and managing money and they are thereore reluctant to take

up the oer

People are anxious that the change to a personal budget will upsetthe arrangements they already have that are working well and valued

by them

Language or cultural dierences are not taken into account and this

leads to misunderstandings.


Clear inormation that is made available in ways and in places that suit

dierent people

Inormation and communication that makes clear:

the dierent ways in which it is possible or people to take control

over decisions about how money that is allocated to them is managed

and spent

that they do not have to directly manage the money themselves or

employ sta i they do not want to and that other people can do this

on their behal

Training and organisational culture which ensures that care

co-coordinators and sta are well inormed, supportive, positive and

hopeul about what people can do and achieve in their lives

A partnership between mental health services, the Direct Payments or

Individual Budgets team and learning providers to actively promote and

support the uptake o personal budgets

Training courses or people with mental health needs that helps them

to understand what is on oer with personal budgets, prepare and gain

condence to use them.

I get help with support planning i I want it and this includes support

with positive risk taking.

I get the support I need to turn the plan into reality.

When the money has been allocated and people have decided on a way

to manage it that suits them, the next stage is to explore how to make

best use o it to achieve what they want in their lives. Some people will

want to design their own support plans without help. For others, getting

the right kind o support to explore options, risks and make decisions

will be a vital actor in achieving positive outcomes. Some people will

be able to put their plans together quickly and some may want longer

to explore options. Support or planning, and or sorting out the things

that will make it happen (sometimes called brokerage) can come rom a

range o people, or example, rom amily or riends, care co-ordinators,

advocates, providers, independent brokers, or voluntary agencies.

(or more inormation about positive risk taking section 1)

SECTION 3

SUPPORT FORMANAGINGPERSONALBUDGETS

ALL THE THINGS ARE INPLACE THAT CAN HELP MECOMFORTABLY MANAGE THERESOURCES ALLOCATED TOME, IN A WAY THAT SUITS ME



15/52


16/52


SIGNPOSTS

1. Putting us First: A project about direct payments and individual budgets

or people who use mental health services. Norah Fry Research CentreUniversity o Bristol Contact: [email protected]/ pauline.heslop@

bris.ac.uk0117 331 0982

2. Mersey Care NHS Trust Individual Recovery Budgets Project. This

project was established in Early Intervention Services in Liverpool and

Seton, oering a virtual budget to support individuals to secure items

and services that enable people achieve recovery outcomes. Contact:

Carey Bamber, NW Joint Improvement Partnership: carey.bamber@

northwestjip.nhs.uk or Jenny Robb, Associate Director o Social Care,

Mersey Care NHS Trust:[email protected]

Training

3. A Learning journey to Direct Payments as part o sel-directed

support: Is it or me? Inormation and resources or trainers and people

in a position to make Direct Payments more accessible or people

with mental health needs. Includes workshops to give people the

inormation they need to assess whether or not they want to take up

the opportunity and how to prepare themselves i they do. Also training

the trainers or people who want to run these courses. NIACE (National

Institute o Adult and Continuing Education) Contact: susan.rees@

niace.org.uk 0116 204 4256

Support for managing personal budgets

4. Practical ino and publications on National Centre or Independent

Living website www.ncil.org.uk re: employing people, using

Direct Payments

5. In Control website or inormation on employing sta, and or stories

www.in-control.org.uk

6. Managing the Money: Resource Development options or personal

budgets (DH, 2008)Part o the Personalisation ToolkitAlso contains

inormation on User led organisations (In Appendix 1)www.toolkit.

personalisation.org.uk

7. Good practice in support planning and brokerage (DH 2008) Part o the

Personalisation Toolkit www.toolkit.personalisation.org.uk

8. Direct Payments or people with mental health problems: A guide

to action (DH) CSIP 2006 Contact: www.socialinclusion.org.uk/publications/Direct_Payments_web.pd

9. Barnsley Metropolitan Borough Council have developed a useul guide

to help people put together their own support plan. www.barnsley.gov.

uk/bguk/docs/Social%20Services/Individual%20Budgets/Support%20

planning%20guide%20version%203%2002.07.2007.pd

10. Outcome ocused reviews: A practical guide, DH, May 2009 www.

dhcarenetworks.org.uk/_library/Resources/Personalisation/

Personalisation_advice/OutcomeFocusedReviews2.pd

11. The independent broker role and training requirements: Summary

report, Skills or Care, 2009 www.dhcarenetworks.org.uk/_library/

Resources/Personalisation/Personalisation_advice/SC_ISB.pd

Research12. The implementation o individual budget schemes in adult social care

(2009) Research Brieng 20 Carr, S and Robbins, D Social Care Institute

or Excellence www.scie.org.uk

Positive Risk Taking and Risk Management

(See section 1 Helpul person-centred systems).

More inormation on DHs personal health budgets pilot programme can

be ound at www.dh.gov.uk/en/Healthcare/Highqualitycareorall/

Personalhealthbudgets/index.htm
mailto:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]://www.ncil.org.uk/http://www.in-control.org.uk/http://www.toolkit.personalisation.org.uk/http://www.toolkit.personalisation.org.uk/http://www.toolkit.personalisation.org.uk/http://www.socialinclusion.org.uk/publications/Direct_Payments_web.pdfhttp://www.socialinclusion.org.uk/publications/Direct_Payments_web.pdfhttp://www.barnsley.gov.uk/bguk/docs/Social%20Services/Individual%20Budgets/Support%20planning%20guide%20version%203%2002.07.2007.pdfhttp://www.barnsley.gov.uk/bguk/docs/Social%20Services/Individual%20Budgets/Support%20planning%20guide%20version%203%2002.07.2007.pdfhttp://www.barnsley.gov.uk/bguk/docs/Social%20Services/Individual%20Budgets/Support%20planning%20guide%20version%203%2002.07.2007.pdfhttp://www.dhcarenetworks.org.uk/_library/Resources/Personalisation/Personalisation_advice/OutcomeFocusedReviews2.pdfhttp://www.dhcarenetworks.org.uk/_library/Resources/Personalisation/Personalisation_advice/OutcomeFocusedReviews2.pdfhttp://www.dhcarenetworks.org.uk/_library/Resources/Personalisation/Personalisation_advice/OutcomeFocusedReviews2.pdfhttp://www.dhcarenetworks.org.uk/_library/Resources/Personalisation/Personalisation_advice/SfC_ISB.pdfhttp://www.dhcarenetworks.org.uk/_library/Resources/Personalisation/Personalisation_advice/SfC_ISB.pdfhttp://www.scie.org.uk/http://www.dh.gov.uk/en/Healthcare/Highqualitycareforall/Personalhealthbudgets/index.htmhttp://www.dh.gov.uk/en/Healthcare/Highqualitycareforall/Personalhealthbudgets/index.htmhttp://www.dh.gov.uk/en/Healthcare/Highqualitycareforall/Personalhealthbudgets/index.htmhttp://www.dh.gov.uk/en/Healthcare/Highqualitycareforall/Personalhealthbudgets/index.htmhttp://www.scie.org.uk/http://www.dhcarenetworks.org.uk/_library/Resources/Personalisation/Personalisation_advice/SfC_ISB.pdfhttp://www.dhcarenetworks.org.uk/_library/Resources/Personalisation/Personalisation_advice/SfC_ISB.pdfhttp://www.dhcarenetworks.org.uk/_library/Resources/Personalisation/Personalisation_advice/OutcomeFocusedReviews2.pdfhttp://www.dhcarenetworks.org.uk/_library/Resources/Personalisation/Personalisation_advice/OutcomeFocusedReviews2.pdfhttp://www.dhcarenetworks.org.uk/_library/Resources/Personalisation/Personalisation_advice/OutcomeFocusedReviews2.pdfhttp://www.barnsley.gov.uk/bguk/docs/Social%20Services/Individual%20Budgets/Support%20planning%20guide%20version%203%2002.07.2007.pdfhttp://www.barnsley.gov.uk/bguk/docs/Social%20Services/Individual%20Budgets/Support%20planning%20guide%20version%203%2002.07.2007.pdfhttp://www.barnsley.gov.uk/bguk/docs/Social%20Services/Individual%20Budgets/Support%20planning%20guide%20version%203%2002.07.2007.pdfhttp://www.socialinclusion.org.uk/publications/Direct_Payments_web.pdfhttp://www.socialinclusion.org.uk/publications/Direct_Payments_web.pdfhttp://www.toolkit.personalisation.org.uk/http://www.toolkit.personalisation.org.uk/http://www.toolkit.personalisation.org.uk/http://www.in-control.org.uk/http://www.ncil.org.uk/mailto:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]


17/52

17

When someone becomes unwell it is very oten their

immediate amily or riends who provide much o the care

that helps them to recover, or who support them through

recurrences o mental illness throughout their lie. Anyone

could become a carer at any time during their lie.

The National Carers Strategy stresses the importance o support based on

personalisation principles and approaches. The strategy denes a carer

as someone whospends a signicant proportion o their lie providing

unpaid support This could be caring or a relative, partner or riend

who is ill, rail, disabled or has mental health or substance misuse

problems(DH, 2008)38.

Many people do not think o themselves as carers and thereore do not

seek support or are unaware o the support they are entitled to, including

nancial support. Carers themselves are twice as likely to have mental

health needs i they provide substantial care (Singleton et al, 202)36 (Hirst,

2004)39 An estimated 6,000 to 17,000 children and young people care or

an adult with mental health needs (Aldridge and Becker, 2003)37. Thoseproviding 35 hours or more o care a week and those in receipt o Carers

Allowance are more likely to be in the second lowest and middle income

bands than the general population and working carers are more likely to

be unqualied and less likely to hold university degrees than other people

in employment (DH, 2008)38.

The evaluation o the Individual Budgets Pilot reported that:

individual budgets were signicantly associated with positive impacts on

carers quality o lie (SPRU, 2008)5.

There is inormation relevant to carers throughout this document, but this

section tries to look specically rom a carers perspective.

I have easy access to inormation and advice to help and support me

as a carer.


Inormation available very locally e.g. in local shops, pubs and

GP surgeries

Websites designed or carer inormation and support and access

to the internet (and i needed, training and support to use

inormation technology)

Local networks and peer groups or support and exchange o inormation

Well inormed sta who can give me the right inormation and advice,

or direct me to other sources

Health and social care telephone systems that are warm and responsive

and can answer my questions or quickly direct me to the right place.

(See also Inormation and advice section 2)

I I have to go through an assessment or sel-assessment process it is

easy to access and sensitive to my needs and wishes. I I am eligible,

assessment leads to the support I want in a way that suits me.

The contribution I make, and the inormal amily and riendship

networks that support me and the person I care or, are recognised in

assessment and support planning.

It is clear what can reasonably be expected rom me as a caregiver and I

have choices about how and when I provide care.

The processes I go through recognise that I can have a lie o my own

outside o my caring role.


Assessment systems and processes that are based on a set o

personalisation principles, not just a document

Person-centred tools and approaches that put people in control,

recognise and respect the signicant role o carer and acknowledge

the support o amily members and riends

Being treated as an equal partner to develop support plans and

nd support

SECTION 4

SUPPORTFOR CARERS

I GET THE SUPPORT I NEEDTO CARRY OUT MY CARINGROLE, STAY WELL AND LIVEMY OWN LIFE



18/52


Being supported to look beyond health and social care to

consider things like being part o a community, leisure,

education, employment, aith and culture

Support or community participation

(See also Helpul, person-centred systems section 1 and

Partnerships section 7).

I get help and support when I need it and at times o crisis.


Advance directive and crisis planning according to peoples

wishes, that people are condent will be carried out

Acknowledgement o carers needs and wishes and the

sensitive balance o support or the rights o all involved

Creative commissioning that allows or fexibility and choice

Carers control over how money allocated or their support

is spent

(See also Creative Commissioning section 6 and Helpul,

person-centred systems section 1).

I am given inormation about personal budgets. I get the

support that I need, and that suits me, i I take on the

management o a personal budget.

I am not put under pressure to take on management o a

personal budget i I do not eel comortable with this.


Clear, accessible inormation in ways and places that suitdierent people

Clarity about the choices in managing a personal budget or

having it managed on your behal

Well inormed, positive sta who are sensitive to the right kind

and level o support needed to help people take control

Support or person centred care planning and nding what is

wanted, i this is needed

Support and training as a personal budget holder e.g. as an

employer, managing the money, nding the right support

(See also Support or Managing personal budgets section 3).

I can get breaks rom caring when I need them and in a waythat suits me.

In the consultation or the National Carers Strategy, carers made

it clear that the provision o breaks and replacement care were

among their highest priorities. Carers who do not have breaks

rom caring are ar more likely to have mental health needs

(Hirst, 2004)39.


Senior management support or innovation to develop ways o

providing breaks in ways and at times that suit people

Programmes that actively promote inormation about breaks,

in ways that will reach people whoever, or wherever they are

Expert carer commissioners and consultation that impacts on

the way short breaks are provided and made available

Resources that local and health authorities, in partnership,

can invest in a range o ways to meet everyones short break

needs, in response to expert advice rom carers

Personal budgets or carers to decide on and arrange their own

ways o taking breaks

Investment in assistive technology such as Telecare (e.g.sensors placed around the home that trigger alarms connected

to help at the sign o unusual activity such as ront doors

opening at night).

I am not orced into nancial hardship as a direct result o

having a caring role.


Inormation about benets that carers are entitled to is easily

available and there are programmes, campaigns and strategies

to make sure that inormation reaches people

Employers put into practice the requirements o the Work and

Families Act 2006 or fexible working or employees who care

or an adult

Improving inormation about fexible job vacancies via

Jobcentre Plus

Specialist training or Jobcentre Plus Advisers and or health

and social care sta

Funding or replacement care that will allow people to take

part in training and employment programmes

Return to work support

Inormation and support or employers to promote the positive

benets o employing carers.

I can continue my learning and personal development.


Replacement care that people are condent in and eel

comortable with, so that they can participate in training

and personal development opportunities

Training and urther education opportunities that are designed

to be fexible and t in with caring responsibilities

Careers guidance and advice services to help carers

progress back to learning and work through skills and

condence building.


19/52

19

I am able to stay well as a carer


Regular breaks, a decent place to live and nancial security

Annual health checks or carers

National and local projects providing emotional support

or carers

Training and guidance or General Practitioners to help them

better understand the needs o carers

Making sure carers can easily access inormation relevant to

the needs o the person they are caring or and training to

help them in their caring role, i appropriate.

Peer support in the orm o local groups and networks and

the opportunity to meet new people

Prevention and early intervention initiatives (perhaps through

Local Area Agreements) to reach carers who may not be awareo what is available to support them in their caring role

Providing replacement care and nance or caring or carers

programmes local and health authorities in partnership

with the voluntary sector and local shops and services

(e.g. relaxation, therapy and exercise services, drop in centres,

meals out, carers cards that give concessionary rates in shops,

leisure services and or transport etc).

As a child, I am protected rom inappropriate caring and

have the support I need to learn, thrive and have a positive

childhood.


Dedicated Young Carers projects that provide, or example,

evening clubs, weekends away, days out, holidays, someone to

talk to, inormation and advice

High quality targeted support or young carers

Support to have the time and space to learn and have riends

Training and awareness raising initiatives or general

practitioners and teachers

Whole amily approaches to support.

I am respected by proessionals as an expert partner.


Support or involvementin consultation, including

replacement care

Flexible and innovative ways o including carers in consultation

and planning

Experts by experience paid as advisers and commissioners -

in local and wider strategic planning and decision making,

inspection and service design

Carers are able to explore and discuss their concerns in an

atmosphere o trust and:

given general actual inormation

helped to understand issues o condentiality and any

restrictions requested by the person they are caring or and

how to access help

oered a chance to see a proessional on their own

given condence to voice their views

encouraged to eel a valued member o the care team

oered an assessment o their own needs.

(See also under Creative Commissioning section 6).


20/52


Information and websites

1. A list o local carer support groups, and links to their websites can beound on: www.mentalhealthcare.org.uk/carersupport/?id=158#Avon

2. There are many good local websites or mental health carers. An

example is the website or mental health carers in the Bolton area.

www.mentalhealthcarers.org

3. Princess Royal Trust website or young carers: www.youngcarers.net/

who_can_help_me/86/92

4. MIND Carers Factsheetgives inormation about the help and services

that are available or carers o people with mental health needs.

For more inormation on the emotional aspects o the caring role,

see Minds booklet How to cope as a carer. www.mind.org.uk/

Inormation/Factsheets/Carers/

5.Carers Direct

A website giving inormation, support and advice orcarers. Also gives inormation about local mental health services.

www.nhs.uk/carersdirect/Pages/CarersDirectHome.aspx

6. Carers UK is a membership organisation o carers that campaigns

on behal o carers and provides inormation, support and advice.

www.carersuk.org/Aboutus/Howwehelp

7. Facts and statistics about carers. www.carersuk.org/Policyandpractice/

PolicyResources/Policybriengs/FactsaboutcarersJanuary2009.pd

8. Inormation about nancial support or carers can be ound on:

www.carersuk.org/Inormation/Financialhelp

9. Inormation about breaks or carers can be ound on: www.carersuk.

org/Inormation/Helpwithcaring/Takingabreak

10. Carers and condentiality in mental health: issues involved ininormation-sharingA leafet produced by the Royal College o

Psychiatrists and The Princess Royal Trust or Carers www.rcpsych.

ac.uk/PDF/Carersandcondentiality.pd

Policy and guidance

11. SCIE Guide 9: Implementing the Carers (Equal opportunities) Act 2004 ,

SCIE, 2007. Gives quick and easy access to inormation that aids the

implementation o the act, including research, practice examples and

urther inormation. www.scie.org.uk/publications/guides/guide09/

les/guide09.pd

12. Carers at the heart o 21st century amilies and communities: a

caring system on your side, a lie o your own Department o Health,

2007. www.dh.gov.uk/en/Publicationsandstatistics/Publications/

PublicationsPolicyAndGuidance/DH_085345

13. Department o Health website: Carers This section o the DH website

is aimed at health and social care proessionals in the statutory and

independent sectors who work with carers. It contains inormation on

Government guidance and regulations aecting carers, details o the

current carers grant and other relevant inormation on carers policy.

www.dh.gov.uk/en/SocialCare/Carers/index.htm

14. Frequently asked questions about the Work and Families Act

2006 can be ound on: www.carersuk.org/Newsandcampaigns/

makeWORKwork/WorkandFamiliesActFAQ

Projects

15. Partners in Care Partnership between The Royal College o Psychiatrists

and The Princess Royal Trust or Carers to highlight the problems aced

by carers o people with dierent mental health needs and learning

disabilities, and encourage partnerships between carers, patients and

proessionals. www.carers.org/articles/partners-in-care,264,CA.html

16. My care A project or young carers o parents with mental health

needs. Mental Health Foundation and The Princess Trust or Carers.

www.mentalhealth.org.uk/our-work/children-and-young-people/

mycare/?locale=en

17. Employers or Carers is relaunching as a membership orum

or employers, oering a range o support rom inormation on

good practice to training and consultancy. www.employersorcarers.

org/Home

Training courses for carers

18. Caring with condence A programme that provides training or carers,

empowering and enabling them. It inorms people o their rights, the

services available to them and develops their advocacy skills and their

ability to network with other carers to support their needs.

www.dh.gov.uk/en/SocialCare/Carers/DH_075475

SIGNPOSTS
http://www.mentalhealthcare.org.uk/carersupport/?id=158#Avonhttp://www.mentalhealthcarers.org/http://www.youngcarers.net/who_can_help_me/86/92http://www.youngcarers.net/who_can_help_me/86/92http://www.mind.org.uk/Information/Factsheets/Carers/http://www.mind.org.uk/Information/Factsheets/Carers/http://www.nhs.uk/carersdirect/Pages/CarersDirectHome.aspxhttp://www.carersuk.org/Aboutus/Howwehelphttp://www.carersuk.org/Policyandpractice/PolicyResources/Policybriefings/FactsaboutcarersJanuary2009.pdfhttp://www.carersuk.org/Policyandpractice/PolicyResources/Policybriefings/FactsaboutcarersJanuary2009.pdfhttp://www.carersuk.org/Information/Financialhelphttp://www.carersuk.org/Information/Helpwithcaring/Takingabreakhttp://www.carersuk.org/Information/Helpwithcaring/Takingabreakhttp://www.rcpsych.ac.uk/PDF/Carersandconfidentiality.pdfhttp://www.rcpsych.ac.uk/PDF/Carersandconfidentiality.pdfhttp://www.scie.org.uk/publications/guides/guide09/files/guide09.pdfhttp://www.scie.org.uk/publications/guides/guide09/files/guide09.pdfhttp://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_085345http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_085345http://www.dh.gov.uk/en/SocialCare/Carers/index.htmhttp://www.carersuk.org/Newsandcampaigns/makeWORKwork/WorkandFamiliesActFAQhttp://www.carersuk.org/Newsandcampaigns/makeWORKwork/WorkandFamiliesActFAQhttp://www.carers.org/articles/partners-in-care,264,CA.htmlhttp://www.mentalhealth.org.uk/our-work/children-and-young-people/mycare/?locale=enhttp://www.mentalhealth.org.uk/our-work/children-and-young-people/mycare/?locale=enhttp://www.employersforcarers.org/Homehttp://www.employersforcarers.org/Homehttp://www.dh.gov.uk/en/SocialCare/Carers/DH_075475http://www.dh.gov.uk/en/SocialCare/Carers/DH_075475http://www.employersforcarers.org/Homehttp://www.employersforcarers.org/Homehttp://www.mentalhealth.org.uk/our-work/children-and-young-people/mycare/?locale=enhttp://www.mentalhealth.org.uk/our-work/children-and-young-people/mycare/?locale=enhttp://www.carers.org/articles/partners-in-care,264,CA.htmlhttp://www.carersuk.org/Newsandcampaigns/makeWORKwork/WorkandFamiliesActFAQhttp://www.carersuk.org/Newsandcampaigns/makeWORKwork/WorkandFamiliesActFAQhttp://www.dh.gov.uk/en/SocialCare/Carers/index.htmhttp://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_085345http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_085345http://www.scie.org.uk/publications/guides/guide09/files/guide09.pdfhttp://www.scie.org.uk/publications/guides/guide09/files/guide09.pdfhttp://www.rcpsych.ac.uk/PDF/Carersandconfidentiality.pdfhttp://www.rcpsych.ac.uk/PDF/Carersandconfidentiality.pdfhttp://www.carersuk.org/Information/Helpwithcaring/Takingabreakhttp://www.carersuk.org/Information/Helpwithcaring/Takingabreakhttp://www.carersuk.org/Information/Financialhelphttp://www.carersuk.org/Policyandpractice/PolicyResources/Policybriefings/FactsaboutcarersJanuary2009.pdfhttp://www.carersuk.org/Policyandpractice/PolicyResources/Policybriefings/FactsaboutcarersJanuary2009.pdfhttp://www.carersuk.org/Aboutus/Howwehelphttp://www.nhs.uk/carersdirect/Pages/CarersDirectHome.aspxhttp://www.mind.org.uk/Information/Factsheets/Carers/http://www.mind.org.uk/Information/Factsheets/Carers/http://www.youngcarers.net/who_can_help_me/86/92http://www.youngcarers.net/who_can_help_me/86/92http://www.mentalhealthcarers.org/http://www.mentalhealthcare.org.uk/carersupport/?id=158#Avon


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21

SECTION 5

FAIR ACCESSAND EQUALITY

OPPORTUNITIES AREAVAILABLE TO MEWITHOUT DISCRIMINATIONOR UNFAIRNESS


There have been some positive developments in

ensuring equality and air access in health and social

care services, supported by legislation, but recent

evidence shows that we still have some way to go.

Some examples o health and social care inequalities

have been evidenced or black and ethnic minorities

(DH, 20079 DH, 200810) lesbian, gay and bisexualpeople (CSCI, 2008)12, disabled people (CSCI,

2009)13. and people with mental health needs and/

or learning disabilities (Mencap, 2008)14, (Disability

Rights Commission, 200615) Some o the barriers to

equality that these studies identiy are, or example,

physical access, communication, stigma, and low

expectations. People with mental health needs are also

likely to experience higher levels o deprivation and

poverty (Thornicrot, 1991)16 and have a very high risk

o ailing to nd and retain employment (Oce or

National Statistics, 2003)19. All aspects o the ramework

outlined in this guide would need to be in place in

order to ensure air access and equality and improve

opportunities and outcomes or people with mental

health needs, but this section deals with some specic

equality issues.

My cultural background and communication needs are taken into

account in assessment and sel assessment and support planning.

Enough time is given to me so that I can explain my needs properly,

or or a amily member or advocate to explain them on my behal.

There is continuity in the contact I have with proessionals and I

dont have to keep explaining things over and over again.


In health and social care assessments a whole lie approach

is taken, which includes, or example, taking into account

the importance o culture, aith, relationships, amily, caring

responsibilities, a decent place to live, nance and employment,

social and leisure activities

There is a streamlined approach to person centred inormation thatmeans people do not have to keep telling their stories over and

over again

Availability o interpreters, guides and advocates, including

dedicated time slots where interpreters are on hand

Flexibility in appointment systems to refect an understanding

that things may take longer i there are language or

communication dierences or i people have diculty in

speaking or expressing themselves

Opportunities or people to nd out about and easily access

English or speakers o other languages courses

Dedicated training or proessionals in working with language and

communication dierences and working with interpreters

Drop in acilities where people can get inormation in a range o

ormats and languages and check inormation they have received.

There are no barriers to access and the quality o the services I am

oered is the same or me as or everyone else.

There is a good choice o opportunities and services that take

account o my particular needs.

Examples o things that help with this: Inormation in dierent orms and rom dierent sources (more in

ino section 2)

Dedicated teams, and voluntary groups that speak a range

o languages and actively work locally to improve access and

outcomes (or example to employment and nancial advice) and

also work with health and other sta to increase awareness and

understanding o cultural and other dierences


22/52


Access to an employment adviser and to schemes like

Pathways to Work (more ino on partnership section 7)

Anyone who is eligible or access to public unding or services

is oered the opportunity to have a personal budget

Promotion o inormation about personal budgets through

local radio, community broadcasting and satellite channels that

are designed or dierent communities and audiences

Access to inormation technology and specic training and

support to use it

Availability o specialists with training and understanding o

special needs

Local organisations working with prisoners with mental

health needs - or example, providing the opportunity

to access training to talk about their experiences, so that

proessionals and services can have a better understanding

and be more responsive

Innovative approaches to involving people in planning and

development, designed by people who use or have used

services or example, community events run by local people

The involvement o mental health service user experts in the

commissioning, contracting and procurement process

Good, relevant data collection to inorm commissioning,

including what is working and what is not working or people

Specic equality targets in commissioning and contracting,

including equality principles as part o the criteria or

evaluating tenders.

Support and development o user led services (more ino in

the creative commissioning section 6)

Dedicated action in helping people to recruit personal

assistants who can meet cultural, linguistic and religious

requirements or example, advertising campaigns via local

and community specic media

Flexibility in the limitation in Direct Payments o payment to

relatives (but ensuring that assumptions are not made that this

might be the only option or some people)

PCTs working with local authorities through local strategic

partnerships and local area agreements to tackle wider social

issues impacting on health and well being such as housing and

employment as addressed within PSA 16.

I get a air choice and opportunities are available to me even

though I live in a rural area.

About 9.5 million people live in rural areas in England and this

is a growing number. There are particular diculties or people

living in rural areas, such as variability in provision, stigmatisation

and isolation, rural racism poor transport and housing poverty

(SCIE, 2007)20.

Personal budgets could provide an answer to some o the

diculties that people who live in rural areas have in nding

the right help and support to live their lives. However, thereneeds to be a recognition that health and social care policies and

programmes must recognise and address rural circumstances

and ensure equitable outcomes in rural areas (Commission or

Rural Communities, 2008)21.


Geographical and community specic promotion o personal

budgets, and the provision o the right advice, advocacy and

support to take advantage o them

Inormation made available locally or example, in local

shops, GP practices, or via church and parish magazines

Good consultation and direction rom people in rural areas

about what is needed and what will work

Community development and practical support or the

development o local clubs and activities

Community transport schemes

Creative use o mobile services (e.g. mobile libraries) and o

local venues (e.g. lunch clubs in local pubs)

Market development and support or small, local voluntary

groups and social enterprises

Systems and services that can be fexible and adapt to

local circumstances

Good contingency planning or the management o crisis and

i things go wrong.


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23

SIGNPOSTS

Equality in health and social care and beyond

1. Will community-based support services make direct payments aviable option or black and minority ethnic service users and carers?

Dr Ossie Stuart, Social Care Institute or Excellence, 2006, London.

www.scie.org.uk

2. Delivering Racial Equality website: In January 2005, the Department o

Health published a ve-year action plan, Delivering Race Equality (DRE) in

Mental Health Care. DRE aims to help mental health services provide care

that ully meets the needs o BME patients and build stronger links with

diverse communities. www.actiondre.org.uk

3. Lakhani,M (2008) No Patient Let Behind: how can we ensure world class

primary care or black and minority ethnic people? London: Department

o Health. www.dh.gov.uk/en/Publicationsandstatistics/Publications/

PublicationsPolicyAndGuidance/DH_084971?IdcService=GET_

FILE&dID=165661&Rendition=Web

4. Race or Health (2006) Towards Race Equality in Health: a guide to policy

and good practice or Commissioning Services. Manchester: Race or Health

www.raceorhealth.org/storage/les/Race_or_Health_Commissioning_

Guide.pd

5. MIND website with inormation about mental health discrimination

and how to challenge it. www.open-up.org.uk/resources

6. Vision and progress: Social inclusion and mental health. www.

socialinclusion.org.uk/publications/NSIP_Vision_and_Progress.pd

Local services

7. Health and Advice Links services based in GP surgeries in Tower Hamlets and

Hackney oer advice on a wide range o issues such as housing, debt, and

employment.

The services are managed by Social Action or Health, a community

development charity that works alongside marginalised local people and

their communities. It operates mainly in East London with sta recruited

rom local people trained to work with their community in their mother

tongue. www.sah.org.uk/sah_php/networks.php?gi_session_name=gi_

session_49d0e28dbc3a

8. Sharing Voices in Bradord (SVB) A community development charity that

works with black and ethnic minority communities to provide culturally

sensitive mental health services. www.sharingvoices.org.uk

9. Rural Emotional Support (REST) service, Staordshire. This is a service run by

a voluntary organisation providing emotional support and practical help or

people living in agricultural communities. www.staordshirementalhealth.

ino/details.asp?CourseID=104

Access

10. Department o Health Equal Access FrameworkPart o the Personalisation

Toolkit. www.toolkit.personalisation.org.uk

11. Inormation about rights to access, treatment and support. www.

equalityhumanrights.com/en/yourrights/rightsindierentsettings/

Healthandsocialcare/Pages/Accesstoservice.aspx#Mental%20health

12. Newman J, Hughes M (2007)Modernising Adult Social Care Whats

working? London DH. www.dh.gov.uk/en/Publicationsandstatistics/

Publications/PublicationsPolicyAndGuidance/DH_076203

Rurality

13. Manthorpe J, Stevens M (2008) The personalisation o adult social care in

rural areas, Cheltenham: Commission or Rural Communities.

www.ruralcommunities.gov.uk/les/CRC%2078%20Adult%20Social%20

Care.pd

14. Bowden C and Mosley M (2006) The quality and accessibility o services

in rural England: a survey o the perspectives o disadvantaged residents

Wolverhampton, ADAS. www.dera.gov.uk/rural/pds/research/quality-

accessibility-services-rural-eng-report.pd

15. Rural Emotional Support (REST) service, Staordshire. This is a

service run by a voluntary organisation providing emotional support

and practical help or people l iving in agricultural communities.

www.staordshirementalhealth.ino/details.asp?CourseID=104
http://www.scie.org.uk/http://www.actiondre.org.uk/http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084971?IdcService=GET_FILE&dID=165661&Rendition=Webhttp://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084971?IdcService=GET_FILE&dID=165661&Rendition=Webhttp://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084971?IdcService=GET_FILE&dID=165661&Rendition=Webhttp://www.raceforhealth.org/storage/files/Race_for_Health_Commissioning_Guide.pdfhttp://www.raceforhealth.org/storage/files/Race_for_Health_Commissioning_Guide.pdfhttp://www.open-up.org.uk/resourceshttp://www.socialinclusion.org.uk/publications/NSIP_Vision_and_Progress.pdfhttp://www.socialinclusion.org.uk/publications/NSIP_Vision_and_Progress.pdfhttp://www.safh.org.uk/safh_php/networks.php?gi_session_name=gi_session_49d0e28dbc3afhttp://www.safh.org.uk/safh_php/networks.php?gi_session_name=gi_session_49d0e28dbc3afhttp://www.sharingvoices.org.uk/http://www.staffordshirementalhealth.info/details.asp?CourseID=104http://www.staffordshirementalhealth.info/details.asp?CourseID=104http://www.toolkit.personalisation.org.uk/http://www.equalityhumanrights.com/en/yourrights/rightsindifferentsettings/Healthandsocialcare/Pages/Accesstoservice.aspx#Mental%20healthhttp://www.equalityhumanrights.com/en/yourrights/rightsindifferentsettings/Healthandsocialcare/Pages/Accesstoservice.aspx#Mental%20healthhttp://www.equalityhumanrights.com/en/yourrights/rightsindifferentsettings/Healthandsocialcare/Pages/Accesstoservice.aspx#Mental%20healthhttp://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_076203http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_076203http://www.ruralcommunities.gov.uk/files/CRC%2078%20Adult%20Social%20Care.pdfhttp://www.ruralcommunities.gov.uk/files/CRC%2078%20Adult%20Social%20Care.pdfhttp://www.defra.gov.uk/rural/pdfs/research/quality-accessibility-services-rural-eng-report.pdfhttp://www.defra.gov.uk/rural/pdfs/research/quality-accessibility-services-rural-eng-report.pdfhttp://www.staffordshirementalhealth.info/details.asp?CourseID=104http://www.staffordshirementalhealth.info/details.asp?CourseID=104http://www.defra.gov.uk/rural/pdfs/research/quality-accessibility-services-rural-eng-report.pdfhttp://www.defra.gov.uk/rural/pdfs/research/quality-accessibility-services-rural-eng-report.pdfhttp://www.ruralcommunities.gov.uk/files/CRC%2078%20Adult%20Social%20Care.pdfhttp://www.ruralcommunities.gov.uk/files/CRC%2078%20Adult%20Social%20Care.pdfhttp://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_076203http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_076203http://www.equalityhumanrights.com/en/yourrights/rightsindifferentsettings/Healthandsocialcare/Pages/Accesstoservice.aspx#Mental%20healthhttp://www.equalityhumanrights.com/en/yourrights/rightsindifferentsettings/Healthandsocialcare/Pages/Accesstoservice.aspx#Mental%20healthhttp://www.equalityhumanrights.com/en/yourrights/rightsindifferentsettings/Healthandsocialcare/Pages/Accesstoservice.aspx#Mental%20healthhttp://www.toolkit.personalisation.org.uk/http://www.staffordshirementalhealth.info/details.asp?CourseID=104http://www.staffordshirementalhealth.info/details.asp?CourseID=104http://www.sharingvoices.org.uk/http://www.safh.org.uk/safh_php/networks.php?gi_session_name=gi_session_49d0e28dbc3afhttp://www.safh.org.uk/safh_php/networks.php?gi_session_name=gi_session_49d0e28dbc3afhttp://www.socialinclusion.org.uk/publications/NSIP_Vision_and_Progress.pdfhttp://www.socialinclusion.org.uk/publications/NSIP_Vision_and_Progress.pdfhttp://www.open-up.org.uk/resourceshttp://www.raceforhealth.org/storage/files/Race_for_Health_Commissioning_Guide.pdfhttp://www.raceforhealth.org/storage/files/Race_for_Health_Commission

Paths to Personalisation

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Transcript of Paths to Personalisation