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For Macmillan professionalsSpring 2013Issue 64

Sharing good practiceSocial media: networking

and sharing for the internet age

Boots Macmillan Information Pharmacist

Sunil Patel

Acute oncology services

In focus

Contents

2 Mac Voice Spring 2013

Visit our websiteAll the great news stories and features from this issue are now available at macmillan.org.uk/macvoice If you’d like to stop getting a paper copy of Mac Voice, email [email protected]

Writers wantedMac Voice is for you. You can write about the issues that matter to you and share your knowledge with others. You don’t have to be an experienced writer to get involved – simply email macvoice@macmillan. org.uk or call 020 7091 2219.

ContributorsAllan Cowie • Philippa Jones • Debbie Jordan • Teresa Kua • Sheila McConville • Denise Moorhouse • Sunil Patel • Hannah Pritchard • Helen Tyler • Beverley van der Molen • Erica Sheppard • Sadie Smith • Tracey Wilcocks • Carolyn Walmsley

Editorial boardCharlotte Argyle, Carers Support Manager Kathy Blythe, Macmillan Development Manager • Alison Foster, Macmillan Clinical Nurse Manager & Lead Clinician for Specialist Palliative Care • Alison Hill, Nurse Director, South West London Cancer Network • Beverly Hurst, Macmillan Gynaecology/Oncology CNS Susan Llewelyn, Macmillan Information Facilitator Yvonne McKenna, Macmillan Lead Cancer Nurse Barry McVeigh, Macmillan Development Manager • Heather Nicklin, Macmillan Specialist Palliative Care Social Worker • Tim Iveson, Macmillan Consultant Medical Oncologist • Debbie Provan, Macmillan Project Lead Dietitian • Helen Tyler, Therapies Service Manager • Tracy Williams, Senior Information Development Nurse

Editorial teamRosie Cotter • Genevieve Osei-Kuffuor • Graham Pembrey • Sajjad Shah • Brian Burns

The views expressed in Mac Voice do not necessarily represent the views and policies of Macmillan Cancer Support. Any references to websites, books and journals do not necessarily imply endorsement from Macmillan Cancer Support. Although we do our best to make sure that all of the information in the magazine is accurate and up-to-date, neither we, nor any other party involved in producing the magazine will be liable for your use of its content.

© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). MAC5772_04_13

Printed using sustainable material. Please recycle.

News

4–11 In this issue, we outline upcoming changes to the welfare system, discuss a new programme to transform care in Scotland, and share details of Macmillan’s new discounted will writing service, and much more

Q&A

12–13 Sunil Patel, Boots Macmillan Information Pharmacist, talks about bringing his role to life and building links in his local community

Features

14 Rehabilitation15 Getting active in the capital16 Rethinking roles17 Knit and natter18 Hair loss support19 Clinical buddying

Sharing good practice pull-out

Social media: networking and sharing for the internet age. Macmillan’s Social Media Team provides guidance for professionals.

In focus: Acute oncology services

20–27 Macmillan teams share their experiences of developing acute oncology services from the ground up

Resources28 New and updated information from Macmillan

www.macmillan.org.uk/macvoice 3

Further information

Philippa Jones

Macmillan Network Lead Chemotherapy Nurse

Greater Midlands Cancer Network

[email protected]

01902 446819

Editorial

Urgent care

Many people with cancer will need urgent clinical support because of their treatment or the disease itself. Acute oncology services play a crucial role in supporting these people by providing specialist care.

Acute oncology services were established in the UK following a 2008 NCEPOD report1 that highlighted the process of care of patients who died within 30 days of receiving systemic anti-cancer therapy. It identified remediable factors in the clinical and organisational care of these patients. Many people were getting the wrong advice and not seeing the right type of healthcare professionals, which was contributing to poor outcomes.

In 2009, the National Cancer Action Team proposed that all trusts and cancer networks should establish an acute oncology service to better

Philippa Jones, Macmillan Network Lead Chemotherapy Nurse, on the development of acute oncology services

manage these patients. New roles were established, such as the acute oncology nurse, who would be responsible for embedding acute oncology into services and spreading the word. The remit of these roles and teams varies between trusts, and services have developed differently.

A subsequent 2012 report, Cancer patients in crisis,2 identified the difficulties for health professionals who need to treat people with cancer promptly and effectively, but may not be familiar with cancer management. It provides tools and suggestions for better treatment in community and general practice settings as well as in hospital acute care.

This issue of Mac Voice features coverage of a range of acute oncology service developments by Macmillan professionals. Turn to pages 20–27 to read more.

References1 National Confidential

Enquiry into Patient Outcome and Death. Systemic Anti-Cancer Therapy: For better, for worse? 2008.

2 Royal College of Physicians and Royal College of Radiologists. Cancer patients in crisis: responding to urgent needs. Report of a working party. 2012.


Share news and innovations with other cancer care professionals through the Mac Voice group on LinkedIn. Visit linkd.in/UK42LD to join today.

Sub heading

Hope for youth support

In brief47%The Department of Health has surveyed 5,000 survivors of prostate, breast, bowel and colorectal cancer, and non-Hodgkin lymphoma. At one-year survival, 47% feared recurrence and 27% were afraid of dying. Download the full report at tinyurl.com/bdhxery

ResearchScientists at the University of Bath are developing fluorescent nanoparticles, which could help them create drugs for cancer and other diseases that are cheaper and more effective. Eventually they hope to use the technology to diagnose hard-to-reach tumours.

50,000 More than 50,000 people in the UK care for people with cancer for 35 hours a week while holding down full-time jobs, according to research by Macmillan. Yet 49% receive no support. Carers in need can call the Macmillan Support Line on 0808 808 00 00.

CommunityLibraries in Devon have become hubs for cancer information and support. Barnstaple, Bideford, Holsworthy and Ilfracombe libraries are stocking cancer information and offering specialist support. The scheme is organised by Macmillan, Devon County Council and the NHS.

Hope Support Services offers support to young people aged 11–25 when a close family member is diagnosed with a life-threatening illness.

A cancer diagnosis affects the whole family, including younger family members who struggle to cope with someone close to them being very ill. The support they need is unique.

Hope Support Services aims to improve quality of life for the young person and their family from diagnosis onwards. This can be through one-to-one, online or group activity sessions, workshops and monthly trips. Young people get the chance to meet others in the same situation, share experiences and chat with Hope’s professional team. Hope also offers training for frontline health professionals.

Macmillan is funding two youth development officers for the next three years to help Hope expand its face-to-face service across

Herefordshire and Gloucestershire. It is also growing its online service.

Sue Trevethan, Hope’s founder and Chief Executive, says, ‘We’re delighted that Macmillan has invested in Hope, and look forward to working with our young people to expand and develop our services. Our charity is one “of young people, for young people”. Our Youth Management Teams are made up of young people who have all experienced a family health crisis. They are very excited to be at the heart of the development of services for their peers, filling a gap in government-funded services.’

More informationYou can refer families

to Hope by emailing [email protected] or calling 01989 566317. Families can also contact Hope directly. Find out more at hopesupportservices.org.uk


News


News

Acute oncology forums

University partnership

Two acute oncology nurse forums have been established in the Midlands – the Midlands Acute Oncology Nurses Forum and the East Midlands AOS Forum.

The groups have been set up to provide peer support for new acute oncology services. They are already a big hit with acute oncology newcomers.

The forums aim to: • promote sharing of experiences,

both positive and negative• promote sharing of guidelines,

tools, documents and training • help professionals working

Macmillan has signed a landmark partnership with De Montfort University (DMU) in Leicester. The partnership will focus on volunteering, well-being and research for staff and students, with a theme of survivorship and life after cancer. It’s the first time Macmillan has entered into a partnership with a university.

Volunteering opportunities will be available to students to support people in the community affected by cancer. There will also be joint research and education projects between the two organisations and honorary contracts for Macmillan professionals. All posts and initiatives will be dual-branded. Next steps in the partnership include:• recruitment of a volunteer

coordinator

• recruitment of staff and student volunteers

• recruitment of an academic researcher to improve our understanding of what motivates people to volunteer

• development of a bespoke Macmillan volunteer module to be delivered at DMU

• the creation of honorary contracts for Macmillan professionals working in Leicestershire

• development of an annual Macmillan lecture.

DMU already has a volunteering presence in the community, while Macmillan’s existing partnerships and links with local organisations have created the ideal opportunity to widen the reach of support for people affected by cancer.

The partnership was officially launched on 19 November 2012 by Ciarán Devane, Macmillan Chief Executive, and Dominic Shellard, Vice-Chancellor at DMU.

More informationContact Maxine Astley-Pepper,

Macmillan Development Manager, at [email protected]

together on developmental initiatives

• provide support and guidance• offer a group voice.

Both groups are supported by Macmillan, which is also providing space on the Learn Zone so that projects can be easily shared.

The Midlands forum is open to all (not just those who work in the midlands), and even if you are too far away to attend, you are welcome to join the distribution list.

The UK Oncology Nursing Society (UKONS) is also planning to develop

an acute oncology forum in the near future. The UKONS forum will hopefully link with local/ regional groups and raise awareness of good practice and concerns at a national level.

More informationFor further information about

the Midlands and East Midlands oncology forums, please contact Philippa Jones for the Midlands forum at [email protected] or Melanie Bowling for the East Midlands forum at [email protected]

6 Mac Voice Spring 20136 Mac Voice Spring 2013

News

AprilBowel Cancer Awareness Monthwww.bowelcanceruk.org.uk

Orchid Male Cancer Awareness Week22–29 Aprilwww.orchid-cancer.org.uk

MayInternational Nurses Day12 Maywww.icn.ch

Dying Matters Week13–19 Maywww.dyingmatters.org

JuneVolunteers’ Week1–7 June Email [email protected] for tools, tips and guidance on celebrating volunteers, and attracting new ones.

Carers Week 10–16 Junewww.carersweek.org

Henry Garnett Certificate winnersThe Henry Garnett Certificate celebrates Macmillan professionals who’ve gone above and beyond their regular duties to support Macmillan. Certificates were presented locally to five outstanding professionals late last year.

Lynn Adams, Macmillan Consultant Nurse, NHS GrampianLynn is involved at a strategic level with the progression of cancer nursing across Scotland. She has been instrumental in furthering the professional development of other Macmillan professionals through her support of their requests for further training and attendance at workshops and conferences.

Caroline Boyer, Macmillan Information and Support Services Lead, United Lincolnshire Hospitals NHS TrustCaroline leads a service across Lincolnshire that is forward thinking, innovative and highly valued by Macmillan and the health and social care community. It is also fully integrated into the cancer pathway.

Liz Darlison, Macmillan Nurse Consultant, University Hospitals of Leicester NHS TrustRecognised locally, nationally and internationally, Liz has made a considerable contribution to the

nursing care and management of people affected by lung cancer and, in particular, mesothelioma. Visit macmillan.org.uk/lizdarlison for more on Liz’s work.

Lorna Senior, Macmillan Community Nurse, NHS Western IslesLorna is one of two Macmillan nurses working in a remote island group in the Outer Hebrides. Lorna is committed to further developing the cancer nursing support service available in her area. She also works very closely with the lead cancer nurse for the Western Isles to look at ways of doing this in a demanding geographical location.

Vicky Woodall, Macmillan Clinical Nurse Specialist, Mid Cheshire Hospitals NHS Foundation TrustVicky spends her time helping and supporting people with cancer at Leighton Hospital in Cheshire. As well as being an exceptional nurse, Vicky has given her time to Macmillan’s Direct Marketing Fundraising team, allowing them to use her image to explain to the public just what our nurses do.

More informationFor information about

Macmillan’s awards for professionals, and to nominate a colleague, visit macmillan.org.uk/professionalsawards


News

Through a knowledge-sharing exercise, the Palliative Care team at Darlington Memorial and Bishop Auckland Hospital discovered that the acute-based Palliative Care team in Northumbria had developed a comfort pack for patients and relatives.

The comfort pack consisted of a mixture of toiletries, confectionery and a puzzle book and pen. It also included a simple questionnaire to assess its effectiveness and usefulness.

The Northumbria team had received very positive feedback, with families and friends who have rushed to be with a loved one really appreciating the kind gesture. The team at Darlington felt this could be implemented within its service. This was triggered by a number of episodes where relatives had been travelling long distances to be with loved ones at an emotional and precious time.

Following consultation with the Service Improvement team at Darlington, it was agreed to pilot the project for three months on four wards (a mixture of medicine and surgery). Initial funding came from donations from bereaved relatives and, half way through the process, a kind donation from the organ donation committee.

Comfort packs

Jan Temenos, Oakhaven Schools Project Coordinator, was named Cancer Professional of the Year at the Quality in Care Excellence in Oncology Awards 2012. Jan has helped to change attitudes to death and dying through her work on The Acorn Project, an initiative that links schools with local hospices. Visit macmillan.org.uk/macvoice for more on this project.

The Robert Ogden Macmillan Centre at St James’s University Hospital in Leeds won the award for Improving the quality of life for people living with cancer and was highly commended in the Reducing Cancer Equality category. The team has worked with local wig suppliers to improve wig provision to the black and minority ethnic community (see page 18 for more on this project).

The Lynda Jackson Macmillan Centre at Mount Vernon Cancer Centre was commended in the Cancer Charity Initiative of the Year category. The team developed group sessions to help people with cancer and their carers prepare before the start of chemotherapy, through information and discussions.

Recognising quality in care

The clinical sterile supplies department kindly agreed to package the boxes for free, to meet infection control standards. The wards stored these boxes within the clinical area and offered them to relatives when a patient was identified as approaching the end of life.

The pilot proved successful and the aim is to roll out the scheme across the trust within the acute areas. Initial audit of the packs will include evaluation from the questionnaire, relatives’ feedback and informal comments from staff members. At the time of this report, the trust is already receiving further donations specifically for the future of the comfort packs.

More informationContact Rachel Bradd, Clinical Nurse Specialist,

at [email protected] or Julie Stephenson at [email protected]

‘ The pilot proved successful and the aim is to roll out the scheme across the trust within the acute areas’

Congratulations to all the winners

Sub heading


News


News

An electronic Cancer Decision Support Tool (CDS) is being trialled at hundreds of general practices across the UK after tests found it was beneficial in highlighting certain symptoms, or combinations of symptoms, that indicate the possibility of cancer.

The tool can help GPs identify the signs of five cancer types, including some difficult to detect, such as ovarian and pancreatic cancer. It runs automatically on GPs’ computers using data the GP enters or has stored about a patient to calculate potential cancer risk. A prompt appears if the risk is above a certain level. GPs can also bring up a symptom checker on their screen. An earlier version of the tool was tested at 60 general practices.

Rosie Loftus, Macmillan Lead GP Adviser, says, ‘The CDS makes GPs more aware of the importance of spotting cancer early and helps them deal with the complex decisions around referring people who might have the disease.

‘It is hoped this predictive tool will help GPs with referrals and will mean fewer people die from cancer in the long-term.’

The pilot is funded by Macmillan and the Department of Health. Cancer Research UK is coordinating the evaluation.

Macmillan works hard to give everyone the best possible service it can, but we recognise that sometimes things can go wrong.

If someone complains to you about Macmillan or any aspect of our work, please ask them to tell us about it. They can do this by calling 0808 808 00 00 or by writing to: The Company Secretary, Macmillan Cancer Support, 89 Albert Embankment, London SE1 7UQ. Their letter will then be passed on to the appropriate person or team. You can also direct people to macmillan.org.uk/complaints

The principles of our complaints policy and procedure are that: • complaints are listened to and investigated thoroughly • complaints are dealt with consistently throughout Macmillan • complaints are acknowledged speedily and recorded • complaints are dealt with in an appropriate, fair and timely manner • we learn from the complaint.

If you, as a Macmillan professional, have a complaint about Macmillan that relates to our services, contact your service development manager first. If you prefer not to go through them, or the complaint relates to another area of our work, please use one of the contact routes described above.

New tool highlights cancer symptoms

Macmillan’s complaints policy

Carers Week 2013 will kick start on Monday 10 June. With your help, Macmillan hopes it will be the biggest yet.

As reported in the last edition of Mac Voice, many people who look after someone with cancer don’t identify themselves as carers, and aren’t accessing the support available to them. This year, Carers Week is asking people if they are ‘prepared to care’, and letting them know that support is available for all stages of caring. It’s the ideal opportunity to let carers know that Macmillan is here to help.

Many of you may already have plans to host events for carers and patients. But if this is your first experience of taking part, it couldn’t be easier to get involved.

As well as making a difference to the lives of carers, taking part

Macmillan has launched a discounted will writing service to help people who need to make a will but don’t know where to go or who to trust.

We have partnered with four organisations (all backed by solicitors) that can provide will writing services across England, Scotland and Wales at discounted rates. We are currently looking for a suitable professional partner in Northern Ireland.

Each partner provides a slightly different service – online, telephone and face-to-face visits – so there should be something to suit everyone. We’ve also partnered with Certainty

Get ready for Carers Weekcan have many other benefits. Holding an event is a great way of raising the profile of your service, attracting new visitors and gaining local media coverage. And it’s also a perfect opportunity to network with other professionals and demonstrate the value of your service.

Free resources and supportYou can access free promotional posters, a step-by-step guide to running an event and a range of information resources for your displays and events at be.macmillan.org.uk/cancerawareness

Register your eventTo receive updates from the Carers Week team and promote your event online, please register at carersweek.org

New will writing service National Will Register so that wills can be registered for free.

Anyone can use the service and there is no obligation to leave a gift to Macmillan. We want to help ensure that people affected by cancer, supporters and staff are able to access discounted wills through trusted professionals.

To find out more or to use the service, visit macmillan.org.uk/willwriting or order our leaflet on be.macmillan.org.uk using the code MAC14148.

If you have any general questions about wills and legacies, email [email protected], call 0800 107 4448 or visit macmillan.org.uk/legacies

‘ There isn’t anything I’ve learned at Macmillan that wouldn’t be relevant for a job going forward’ Mike Jones, PR intern

Opportunity knocks Macmillan is widening its internship scheme so more people can help us improve lives. Could you help us find super interns to support our work?

We have 30 home-based World’s Biggest Coffee Morning internship roles available, as well as office-based roles in our Marketing, Survivorship, Corporate Partnerships, Events and Communications departments.

We encourage people of all ages and backgrounds to apply. If you know someone who would be interested in gaining experience and learning about the charity sector, ask them to visit macmillan.org.uk/internships or email [email protected] Applications close on 6 May.

More informationMacmillan professionals

were celebrated at the Macmillan Professionals Excellence Awards in November. To read about the winners, visit macmillan.org.uk/professionalsawards

Macmillan Professionals Excellence Awards 2012

The number of people living with or beyond cancer in Scotland is predicted to almost double from the current 190,000 in 20 years. This changing cancer demographic is reinforced by the Scottish government’s Detect Cancer Early initiative, which is expected to lead to improved outcomes. The Scottish Cancer Taskforce’s Living with Cancer group held an event in 2009 to identify the priority issues. The majority were the same as elsewhere in the UK, and demanded a Scottish response similar to cancer survivorship initiatives in England and Northern Ireland.

The programmeMacmillan in Scotland is investing £5 million over the next five years to support a redesign of care following active treatment of cancer. It will work in partnership with the Scottish government and the three regional cancer networks. As with similar programmes elsewhere in the UK, the aim is to ensure that Scots diagnosed with cancer are prepared for, and supported to live with, the consequences of the diagnosis and its treatment.

Work to date across the UK has identified principles of future practice

that should be integral elements of all new models of cancer care after treatment. Reflecting these principles, the Transforming Care After Treatment programme will focus on: 1 Redesign of current models of

cancer follow-up.2 Development and implementation

of personalised care plans.3 Managing the transition between

acute care and home.4 Enablement and support for

effective self-management.

Delivery will be through a network of test sites across Scotland – active partnerships between people affected by cancer, health, social care and the third sector. The programme board, chaired by Jeff Ace, Chief Executive of NHS Dumfries & Galloway, includes senior representation from Health Boards, Macmillan, the three cancer networks, consultant nurses, primary care and social care. It will direct and support delivery of the programme, reporting directly to the Scottish Cancer Taskforce.

Measures of successThe success of the programme will be measured against the delivery of four key objectives:

1 Reshape the provision of care to provide capacity for the predicted increase in cancer incidence and prevalence.

2 Promote and initiate an integrated, sustainable approach to the provision of care involving health, social care and third sector partners that drives a shift in focus from treating the disease to health and well-being.

3 Create a culture of confidence in patients and professionals that supports people to regain control of their lives, facilitates self-management, develops new approaches to surveillance and reduces unnecessary reviews.

4 Facilitate shared decision-making with people in cancer follow-up programmes that promotes co-design of high-quality, safe continuing care. Redesigned models of care will be based on informed choice and deliver a service fit for the future, which facilitates recovery of function, confidence and morale.

More informationContact Allan Cowie on

0131 260 3720 or email [email protected]

Redesigning care in ScotlandMacmillan General Manager Allan Cowie explains why the time is right to launch Scotland’s programme to transform care for people living with and beyond cancer


Disability benefitsDisability Living Allowance (DLA), the current disability benefit for people aged 16–64 with long-term disability, is due to be replaced by the Personal Independence Payment (PIP).

PIP, like DLA, will have two components that will be awarded according to mobility difficulties and the need for assistance with daily living. Terminally ill applicants can claim the daily living component of PIP under the fast-track ‘Special Rules’ without fulfilling these requirements.

From April 2013, all new claims for people in designated parts of northern England will be for PIP instead of DLA. People elsewhere in the UK can continue to make initial claims for DLA. However, from June 2013 all new claims will be for PIP instead of DLA.

Changing circumstancesAll existing DLA claimants aged 16–64 will eventually be affected by the introduction of PIP but this may not take place until 2015 at the earliest. However, they will be invited to claim PIP instead of DLA if there is a change in their circumstances before this time.

Claimants have no need to take any action until requested to do so by the Department of Work and Pensions (DWP) or by the Social Security Agency (SSA) in Northern Ireland.

News


Welfare reformChanges to the benefits system under the 2012 Welfare Reform Act will have an impact on people already affected by cancer. Some changes have already begun, while others are taking place over the next few years. Macmillan Benefits Adviser Carolyn Walmsley details the main changes

Universal CreditFundamental to welfare reform is the introduction of one benefit, Universal Credit (UC), to replace six means-tested benefits – Income Support, Housing Benefit, Child Tax Credit, Working Tax Credit, and Employment and Support Allowance (ESA) and Jobseeker’s Allowance when paid on an income-related (means-tested) basis.

Phased outNew claims for the six benefits listed above will be phased out between October 2013 and April 2014. By the end of this period, UC will be claimed instead of any one of them. UC includes provision for basic living costs, children’s cost and housing costs, including rental payments. People currently receiving any of the six listed benefits will have their claims migrated to UC between April 2014 and 2017.

There is a guarantee that their benefit income will not reduce when this happens, as long as their circumstances stay the same. People don’t need to take action themselves; the DWP or SSA will contact them.

A number of benefits will remain as they are. These include Attendance Allowance, bereavement benefits, Carer’s Allowance and help with health costs. From April 2013, however, Council Tax Benefit is being replaced by a system of localised Council Tax Support.

Employment and Support AllowanceContribution-based ESA, the basic earnings-replacement benefit for people of working age who are too ill to work, remains in place. And people affected by cancer who are receiving, anticipating or recovering from any kind of chemotherapy or radiotherapy will now be treated as unable to work or undertake any work-related activity. They will therefore satisfy the work capability assessment for entitlement to ESA and be allocated to the support group of recipients.

Benefit capFrom April 2013, a benefit cap may restrict a recipient’s total weekly income from benefits and the amount of help they receive with their rent.

More informationContact the Macmillan Welfare

Rights Team on 0808 808 00 00. Macmillan’s financial information is being updated and will be available to order soon.

Useful linkswww.dwp.gov.uk/policy/welfare-reform/universal-credit www.gov.uk/pipwww.disabilityrightsuk.org/forthcomingchanges.htm

Name

Sunil PatelBoots Macmillan Information Pharmacist

In postSince April 2012

LocationBolton

[email protected] 01204 524133

12 Mac Voice Spring 2013 www.macmillan.org.uk/macvoice 13

About the roleBoots Macmillan information pharmacists are Boots UK pharmacists who have received bespoke training to help people affected by cancer. They are part of Macmillan’s network and are able to help people affected by cancer access the information and support they need, signpost and connect them to services in their local area, and offer support in an accessible, trusted, familiar and informal environment.

‘To bring the role to life, you’ve got to do it yourself’

‘ We want to give back to Macmillan. It’s fun too’

What motivated you to take up the role?I went to the Boots UK pharmacy conference where they launched the role. I decided to look into the training and whether the role would benefit my patients. When I started researching the potential benefits, I found out that the nearest Macmillan information centre was 15 miles away. If you’ve got cancer, that may be quite far. So I did the training and developed my role from there.

What does the training involve?It’s an e-learning programme that gives you a broad understanding of cancer and how to talk to people about cancer. It sets you off in the right direction and identifies any gaps in your knowledge so you can build on them.

Tell us how you’ve approached the roleI think that If you really want to bring the role to life, you’ve got to do it yourself. I started out by promoting the service by word of mouth and telling patients how I can help. I now have around 25 regular patients who come to me for information. I’ve also built links with the local Macmillan information centre, GPs and district nurses, to let them know I am one of the people who can link with them. This has created a more complete pharmacy service.

The dispensing team is also getting involved by reading new Macmillan information.

Macmillan’s 360+ cancer information sheets are now onlineOur high-quality cancer information sheets (previously Cancer Factfile CD-Rom) are now available exclusively online. They cover a variety of topics, including chemotherapy drugs, rare cancers, pre-cancerous conditions and living with cancer, all certified by the Information Standard.

View the full range at be.macmillan.org.uk/cancerinfosheetsAny questions? Email us at [email protected]

What impact has the work had on your wider role?I have a higher level of satisfaction in my role and I’ve gained transferable skills. Too commonly, pharmacists seek the answers through medicine. This role helps with communications skills and your social and emotional side.

I’ve also had a couple of consultants call me to tell me how useful the service is. Now patients see me as part of the network.

What are your plans for the future of the role?I’d like to develop services around two passions – one is looking at how we can help prevent cancer and the other is providing the best treatment possible.

Why did you choose to go into pharmacy?I’ve been working in pharmacies since I was 16. Work experience at college led to a part-time Saturday job. I liked the interaction with people and my interest developed from there. I went on to study pharmacy at university.

What’s the best advice you’ve ever had?An area manager once told me, ‘If you’re going to do something, make sure you’re the very best – otherwise, don’t bother.’ I think of that advice whenever I set out to do something new.

Have you done any fundraising?We held a Macmillan day in the store and took part in a torch relay with other Boots UK stores. We sometimes wear the green Macmillan wigs. We want to give back to Macmillan. It’s fun too.

What kind of queries do you get?It’s often quick questions, such as how to treat a sore mouth during radiotherapy or what type of deodorant to use. The first person I saw was the hardest; they broke down in tears. Previously I’d not had much exposure to cancer. When I get questions beyond my remit, such as financial issues, I refer people to other services or Macmillan’s information. I’ll also ring the local Macmillan information centre and make an appointment for them to come in. I also try to help carers with any practical issues.

What benefits have you seen for people affected by cancer?I had one patient with a rare type of liver cancer. She had previously been put off asking questions and would mull over her worries. But she came to us because we were local and very accessible – you don’t have to make an appointment.


Feature Consequences of treatment

RehabilitationA new specialist service offers rehabilitation and support for people living with radiation-induced injuries

Further information

Denise Moorhouse

Service Manager, Breast Radiotherapy Injury Rehabilitation Service

Royal National Hospital for Rheumatic Diseases

01225 473462

denise.moorhouse@ rnhrd.nhs.uk


Working with a client with lymphoma led personal fitness trainer Mark Wild to offer his

expertise to Macmillan. Mark was put in contact with our team at Paul’s Cancer Support Centre in south London, and this led to the launch of our Get Active programme last June.

We initially had no idea what the interest would be from our clients, so we held an exploratory workshop. People told us that they wanted a regular activity group and one-to-one tailored sessions.

Beverley van der Molen, Macmillan Information and Education Officer, is working with a personal fitness trainer to offer exercise sessions to people affected by cancer

While being physically active is safe for most people, we make sure that individuals take up the most suitable type of activity. We give them a consent form to be signed by their GP or hospital doctor before coming along to the group. Mark also gives them a Physical Activity Readiness Questionnaire (PAR-Q) to complete before their first session.

We had to develop our own guidelines for the programme, as most of the information on physical activity and cancer is about the evidence to support it, rather than on setting up a group. Our guidelines recommend that exercise professionals must be recognised as a Level 3 practitioner based on the UK’s Register of Exercise Professionals. Mark is a qualified advanced personal trainer (Level 3) and runs his own personal training business. Both Mark and the centre hold public liability insurance.

We have yet to formally evaluate our programme but client feedback is very positive.

Paul’s Cancer Support Centre was established in 1983 as London’s first cancer support group. It has evolved into a centre that provides a range of services for people affected by cancer, their family and friends.

Related information For more information and resources

on physical activity, visit macmillan.org.uk/movemore

‘I am more flexible since joining the group and have more energy. We also have fun and laughter together’Rani, participant

Further information

Beverley van der Molen

Macmillan Information and Education Officer

Paul's Cancer Support Centre, London

020 7801 2964

beverleym@paulscancer support.org.uk

www.paulscancersupport.org.uk

References

Davis N, Bateman L, Thomas R. Exercise and lifestyle after cancer – evidence review. British Journal of Cancer. 2011. Vol 105; 52–73.

Referrals

All referrals should be directed to Professor Candy McCabe at RNHRD at candymccabe @rnhrd.nhs.uk or 01225 473462

T hanks to campaigning by Radiotherapy Action Group Exposure, men and women in England

who have developed consequences to radiotherapy treatment can now access a highly specialised national service. The service is run in collaboration with oncology colleagues from The Christie, Manchester, and Barts Health, London.

The Breast Radiotherapy Injury Rehabilitation Service is available to anyone registered with a GP in England and is run by the Royal National Hospital for Rheumatic Diseases (RNHRD), a specialist rehabilitation hospital with an international reputation in pain management.

The condition Radiation-induced injury to the adjacent side of the affected breast (ipsilateral-axiliary tunnel and brachial plexus) is a rare condition arising from previous radiotherapy techniques. An estimated 250 people currently have this syndrome. Symptoms can include: • severe and constant pain on the side

of the affected breast• paralysis of the arm or hand with a

significant impact on functional activities• gross lymphoedema• lung damage, breathing problems

or chest infections• osteoporosis and other

musculoskeletal problems • psychological problems.

The condition has no cure and is exacerbated by age-related co-morbidities. Radiation damage to the brachial plexus cannot be reversed. Untreated, patients develop secondary complications, resulting

in a significant deterioration in health, mobility and social function.

The needs of this group were evaluated following national clinics and an RNHRD pilot in 2011. Professor Candy McCabe said, ‘Feedback was extremely positive, with patients appreciating the ability to talk to clinicians who understood their problems.’

National service The service started in April 2012 and is delivered in partnership with three oncology centres: The Christie, Manchester, Royal United Hospital, Bath, and Barts Health NHS Trust, London. A separate service is available in Scotland and Wales.

The team is made up of clinical oncologists, nursing and therapy specialists, psychologists, respiratory physicians and rheumatologists. It has established a referral pathway that enables patients to access the service at their nearest hospital.

Following telephone assessment by a specialist nurse, patients attend a two-day clinic. They see clinicians who best meet their individual needs, and address issues such as fatigue management and exercise in a group. The team agrees a discharge plan that is implemented through the patient’s GP, using local services. Also available is a two-week intensive programme option, focusing on particular aspects of an individual’s rehabilitation.

The service aims to provide continuing support for patients and is endorsed by NCAT and Macmillan.

Related informationVisit be.macmillan.org.uk to order,

free, a range of patient resources about managing the late effects of treatment.

Useful links

Register of Exercise Professionals (REPs)

www.exerciseregister.org

We developed a programme open to everyone affected by cancer, during or after treatment. All of the centre’s clients are invited to come along and find out how they can be more active in a fun, friendly and safe environment. There is a mixture of low-intensity cardiovascular and resistance-based activities, held at the centre or in local parks. All classes consist of 6–10 participants, so individual support can be provided. Following the sessions, participants can have a brief one-to-one with Mark to discuss any issues.

Getting active in the capital

A t Bradford Teaching Hospitals NHS Foundation Trust, people with upper gastro intestinal (GI) or hepato

biliary (bile duct, liver and gall bladder) cancer receive support and information from a team of upper GI cancer nurse specialists (CNSs).

Career progression for one team member led us to consider how we could develop the service. The team had always had two whole-time equivalent posts covered by three CNSs. We explored the ‘specialist’ aspects of the CNS role, concluding that while some aspects were not specialist, it was still hugely important to patients. The vacant post provided a great opportunity to rethink how we work.

With support and funding from Macmillan, we focused on the non-specialist components of the CNS role and decided to introduce a new healthcare coordinator role (band 4). The key aspects include:• Coordinating high-quality care

(along with the nursing team) through telephone and face-to-face assessment, and identifying needs using basic clinical knowledge, tools and procedures.

• Ensuring the provision of appropriate services to maximise the health and quality of life of the patient.

• Acting as a single point of contact for patients, carers and the healthcare team; triaging enquires to the right hospital or community department; and providing routine information and advice for patients and carers.

• Documenting and monitoring all aspects of patient care coordination and service delivery, supporting data collection for audit.

Promoting and explaining the role has been easier than anticipated. We produced a leaflet explaining the role and give it to all patients at their first consultation.

ImpactPatients, families and colleagues have accepted and welcomed the role. The coordinator has developed strong relationships, resulting in a service more responsive to patient needs, and more accessible. The CNSs can now focus on the specialist aspects of their role.

The coordinator has time to explore patient needs such as social care requirements. This has always been important, but the coordinator can use our holistic needs assessment as a base line to explore options in the local community. Patients also have a point of contact when they have concerns not directly related to their clinical care.

It is a multifaceted role and the many skills that the coordinator has brought to it show in the way the team now works. It has allowed us to organise and deliver educational events, host awareness days, present work at national conferences and continue to deliver high-quality, individualised care.

We have received positive verbal feedback from patients and now have plans to evaluate the role by adding questions about it to our annual patient satisfaction survey.

We would wholeheartedly encourage colleagues to consider this new way of working. Our one concern is the career progression pathway for the coordinator – something that we will be looking at going forward.


Feature Service delivery

Rethinking rolesA new Macmillan role is helping to provide a more responsive service to people with upper GI cancers

Further information

Tracey Wilcocks

Specialist Nurse Upper GI

Bradford Teaching Hospitals NHS Foundation Trust

01274 382585

tracey.wilcocks@ bthft.nhs.uk


W hen I first came into post, I was told by someone affected by cancer that once the support

and intensity of regular treatments go, life is a challenge but in a very different way. This theme kept recurring, so I looked at local support and activity groups and came up with the idea of a knitting group.

One of the Monmouthshire libraries in Caldicot had a small community room and a Macmillan information area. The Manager and Community Librarian for Older People, Fiona Ashley, was keen to develop the library as a community hub, not only for books and information, but also for health information and fun activities, so it provided a suitable venue.

At the first session, Jan Quinton, Senior Library Assistant, and I sat back and waited, fully expecting no one to turn up. Fortunately though, 12 people attended and it quickly felt like everyone had known each other for years.

Each time a new person joins, I explain that the group is run in partnership with Macmillan and Monmouthshire Libraries, and also part of a bigger project in local authority libraries across South East Wales that aims to provide accessible information and support for people in a friendly local setting. I ask people to take a leaflet to places they are visiting and spread the word. This helps them to understand how the group supports people affected by cancer and gets the Macmillan message out to the community.

Since the group started we have knitted chicks and snowmen to raise funds for the Velindre Cancer Centre in Cardiff, and hats for the ‘Hats for heroes’ appeal. The 2012 highlight was a knitted, fully decorated

Knit and natterA local knitting group is providing support and friendship for people affected by cancer

Christmas tree. The group wanted to highlight the fact that Christmas can be a difficult time for people affected by cancer. The tree was on display throughout December, and I held small fundraising and information events during this time.

For some, the group is ‘a lifeline’ while others just enjoy coming. Many of them have been affected by cancer in some way. The youngest member of the group is just 10, and the most senior a sprightly 98.

The group has also made squares that are being turned into blankets for people feeling the cold during cancer treatment. This idea has also been embraced by library staff and several library users. The blankets are available from the chemotherapy clinic at Nevill Hall hospital in Abergavenny, for anyone undergoing treatment who would like one.

Information and support Feature

Further information

Erica Sheppard

Macmillan Support and Information Coordinator

Macmillan in Monmouthshire Cancer Support & Information Service

01873 735980 or 07826 876772

[email protected]

‘ It is a multifaceted role and the many skills that the coordinator has brought to it have enhanced the team’

Emma Jehan

Macmillan Care Coordinator

01274 382642

emma.jehan@ bthft.nhs.uk


Services for people with palliative care needs in Northern Ireland have developed considerably over

the past decade, and a number of strategic developments are currently influencing the palliative care agenda.

Living Matters, Dying Matters, the palliative and end of life care strategy for Northern Ireland, recognises that, with people living longer and chronic conditions more prevalent, further collaboration between the health and social care sector and its care partners is essential.

In 2011, Macmillan Specialist Palliative Care Facilitator Aileen Mulligan set up a clinical buddying programme at Southern Health and Social Care Trust, in order to:• build relationships between specialist

teams within the trust• develop a greater understanding of

palliative care and specialist services available across the trust, including hospice services

• understand the constraints of different services

• develop an understanding of the palliative and end of life care needs of particular patient groups

• improve recognition of, and management at, end of life

• share knowledge around best practice for symptom control

• develop leadership and facilitation skills within specialist teams.

Development of the programme An orientation session introduced the participating teams (palliative care, heart failure and COPD) to clinical buddying and included discussions about: • building relationships

Clinical buddyingSharing palliative care knowledge between teams has enhanced patient care and specialist knowledge

• support and respect for each other• sharing knowledge/case studies/issues• improving communication• networking• greater awareness of each other’s roles.

Shadowing days were arranged, with, for example, the specialist heart failure nurse, COPD nurse/physiotherapists pairing with a palliative care nurse for three days, and vice versa. This helped team members to make connections between areas of work, learn more about other diseases, and how to manage them and who to ask for advice.

FeedbackOverall, participant feedback described a positive experience that improved patient-centred care. Other benefits included:• It aided management of multiple

conditions.• Better relationships between teams

and a shared understanding of other services

• Enhanced skills, knowledge and confidence around palliative and end-of-life care

• It promoted professional support.

Some noted that it was difficult to make time for buddying, expectations were sometimes unrealistic, and care sometimes overlapped between teams.

Way forwardThere are now plans to extend the programme to other specialist teams within the trust. The Memory Team, which cares for people with dementia, will facilitate sharing and learning from the programme between teams.

Support Feature

Further information

Sheila McConville

Macmillan Specialist Palliative Care Facilitator

Southern Health and Social Care Trust

Nurses Home Daisy Hill Hospital

028 308 35000 ext 2494


Feature Information and support

Hair loss supportSadie Smith on the Robert Ogden Macmillan Centre’s award-winning hair loss support service

Further information

Sadie Smith

Macmillan Information & Support Manager

Robert Ogden Macmillan Centre

St James’s University Hospital, Leeds

01132 066498

sadie.smith@ leedsth.nhs.uk

www.blackhealthinitiative.org

Hair loss support is a vital part of quality chemotherapy care. The centre, which is based at

St James’s University Hospital in Leeds, has provided a hair loss support service since 2001. The team has developed this service over the past decade and recently won the ‘Improving the quality of life for people living with cancer’ category at the 2012 Quality in Care (QiC) Excellence in Oncology Award for its efforts.

The service started with one support worker, working 15 hours a week, and now has two support workers providing 42 hours a week of hair loss support. Julie Carrick and Marie Nebard, Macmillan Hair Loss Support Workers, are qualified wig fitters and hairdressers, with many years’ experience supporting people coping with hair loss due to cancer treatments.

In 2011, the service ran 1,254 appointments, with a further 503 people getting support over the phone.

The team sought to improve the service through a variety of initiatives, from improving the equity of hair loss support, to better access to, and different models of, service provision.

People from black and minority ethnic (BME) communities were not accessing the service, believing the wigs were not for them. Macmillan Project Officer, Tom Mansell, identified that BME service users were unhappy that the wig catalogues only featured white female models. Tom led a focus group at the Black Health Initiative in Leeds, where the women were pleasantly surprised with the range of wigs available. It was acknowledged that the wig catalogue was not suitable

and some of the women volunteered to model for a bespoke catalogue.

The team worked closely with the wig supplier to improve the range of wigs available. The supplier also agreed to make a bespoke electronic catalogue, which included photos taken with a diverse range of models alongside the current model shots they had. Cultural training was arranged with a wig consultant, and Julie and Marie attended training about the cultural differences in African-Caribbean hair.

Brilliant serviceOne woman interviewed for the local newspaper said, ‘The service is brilliant. They had a really good supply of wigs. They also had a lot of knowledge about African-Caribbean hair and wigs.’

Julie and Marie also visit patients on the wards, at day-case units and in waiting areas, which doesn’t allow much privacy for wig fitting. An unused room in the cancer centre was secured and furnished as a hair salon, and has been in use since July 2012.

The National Cancer Action Team asked the team to be a pilot site for a patient-led initiative called Linda’s Great Lengths workshop. This involved running relaxed, informal workshops where people, their friends and families could learn about hair loss, wig fitting and hair re-growth. Trained volunteers gave demonstrations on alternative headwear, while beauticians offered advice on eyebrow pencilling and eyelash enhancing. Following the success of the pilots, the workshops have been adopted as a model to be continued in the future.

Providing a lifelineTeam Leader Hannah Pritchard describes how the Macmillan Acute Oncology Service in Southampton is helping people in an emergency

T he Macmillan Acute Oncology Service provides people with reassurance, urgent treatment and specialist

advice, without needing to attend the emergency department. It was set up more than 18 months ago with funding from Macmillan. The team includes two band 6 nurses working in the area between 8am and 8pm each day, and a specialised registrar working within core hours.

The service takes referrals from a 24-hour advice line and from surrounding clinics, clinical nurse specialists, research nurses and consultants. We have two chair spaces and two beds where patients are reviewed and assessed. We review people with a variety of cancer-related emergencies, from pain management to neutropenic sepsis.

Patients are seen immediately by a nurse, where emergency treatment begins. We have patient group directives in place for medicines such as tazocin (a first-line antibiotic used in neutropenic sepsis) and clexane (an anti-coagulant). This helps us to provide timely treatment, reducing complications and preventable deaths.

The advice line is held by the acute oncology team between 8am and 8pm and by the cancer care wards overnight. We use the UK Oncology Nursing Society (UKONS) triage protocols to assist us with the management of these calls. The phone has become a crucial asset to people undergoing treatment for cancer, with a clinical audit showing that the number of calls has tripled since the service was established. We have had extremely positive feedback from patients using the advice line, referring to it as their ‘lifeline’.

As part of our service we also undertake an ‘outreach’ service, where we visit patients who are known to have a cancer diagnosis but are admitted to non-cancer care wards. This ensures that specialist advice is provided and that patients are on appropriate pathways.

We have gathered a large amount of data since the service began. In the first six months we identified that a large volume of calls were from people suffering with nausea and vomiting as a consequence of treatment for breast cancer. Research was carried out to explore this further and it was found that people having treatment for breast cancer were suffering most with this preventable complication. The hospital has now agreed that all women undergoing treatment for breast cancer should receive an NK1 receptor antagonist (a type of anti-emetic). Since this has been incorporated into their regimen, there has been a significant reduction of this unpleasant side effect. This research was taken to the Multinational Association of Supportive Care in Cancer in New York last year.

Our service was also represented at the International Conference on Cancer Nursing in Prague, where two of our practitioners presented to many international delegates. It was inspiring for us all to attend these conferences with such a range of health professionals, and to learn and share with them ways in which we can develop our service.

We are passionate and dedicated to improving the lives and experiences of people affected by cancer, and we strive for a service that places the patient at the heart of everything we do.


Further information

Hannah Pritchard, Team Leader

Macmillan Acute Oncology Service

University Hospital Southampton NHS Foundation Trust

hannah.pritchard@ uhs.nhs.uk

In this section

21 Providing a lifeline Hannah Pritchard, Team Leader

22–23 Rapid assessment Philippa Jones, Macmillan Network Lead Chemotherapy Nurse

24–25 Managing cancer-related emergencies Debbie Jordan, Macmillan Acute Oncology Clinical Nurse Specialist

26 Metastatic spinal cord compression Helen Tyler, Specialist Oncology Physiotherapist and Therapies Service Manager

27 Managing urgent care Teresa Kua, Macmillan Clinical Nurse Specialist

‘ The phone has become a crucial asset to people undergoing treatment for cancer, with a clinical audit showing that the number of calls has tripled since the service was established’

An assessment tool is helping professionals assess and triage chemotherapy-related problems

Rapid assessment


Further information

Philippa Jones

Macmillan Network Lead Chemotherapy Nurse

Greater Midlands Cancer Network

01902 446819

[email protected]

Central West and Wales UK Oncology Nursing Society (UKONS) members have developed and piloted an

oncology/haematology 24-hour triage, rapid assessment and access toolkit. The toolkit is for staff who may be required to man a 24-hour helpline for adult patients who have:• received chemotherapy/systemic

anti-cancer therapy• received any other type of anti-cancer

treatment, including radiotherapy• disease/treatment-related

immunosuppression, ie, acute leukaemia or corticosteroids.

It’s a risk assessment tool that, if used correctly, standardises and supports excellent practice, improves quality and safety, and provides evidence of service provision. The tool provides a robust framework for triage assessment, action and audit, leading to improved quality and safety in patient care. It works by: • ensuring patients receive a robust,

reliable assessment • ensuring assessments are of a

consistently high quality by using an evidence-based assessment tool

• advising on action that is appropriate to the patient’s level of risk

• ensuring that patients who require urgent assessment in an acute area are identified and that action is taken

• identifying and reassuring those who are at lower risk and may safely be managed by the primary care team or through a planned clinical review to avoid unnecessary attendance

• providing a framework for triage

training and competency assessment for practitioners.

BeginningsDevelopment began in December 2007. Oncology and haematology nurses from the central west region were invited to attend a series of meetings to discuss current practice, determine the project aims and objectives, and develop a project plan. The group were enthusiastic and keen to work together.

The triage process was discussed along with a comprehensive review of current pathways and guidelines. A steering/development group of Central West and Wales UKONS members designed and piloted the toolkit over a three-year period. The group met regularly during this period to review and refine the toolkit. At each stage, the members were asked to take the toolkit back to their clinical teams for discussion. The comments were then considered at the following meeting and the toolkit amended accordingly.

The UKONS chemotherapy leads and board members, and the cancer lead at the National Patient Safety Agency (NPSA), were also invited to review the toolkit at regular intervals. Everyone involved identified the toolkit as a positive step towards supporting patients by providing consistent, reliable advice and support for both patients and staff. The NPSA supported the design, printing and pilot of the toolkit.

Roll-outThe tool was intended for use nationally and has had a great impact on the

provision of helpline care nationally. It is now being developed internationally.

The NPSA funded a multicentre pilot with 19 cancer centres and 17 cancer units from England, Wales and Northern Ireland. Each organisation sent pilot leads to pilot introduction and training days. They then assumed responsibility for the pilot at a local level. The pilot leads were assessed at the training day and acted as mentors and assessors to their trust teams. All staff using the toolkit received training and assessment of competency.

EvaluationThere was a two-step evaluation process, including a questionnaire and log sheets.

Questionnaire Helpline practitioners anonymously completed a questionnaire that gathered information regarding the use of the tool, design, ease of use and reliability. A total of 134 completed questionnaires were returned. All the information received was entered into a database for evaluation.

Log sheetsA review of completed log sheets provided data on reasons for calls, action taken and quality of assessment. A total of 1,899 forms were received and 500 correctly completed forms were randomly selected for review and evaluation.

The pilot ran for a two-month period, or until 100 log sheets were completed. Twenty-five of the 26 sites returned forms in time for evaluation.

The tool was released as a final version in October 2010 following the pilot and a very positive evaluation. The majority of the pilot sites have continued to use the tool. Project costs have been minimal.

The process has been adopted by at least 78 cancer centres/units across the UK, 20 cancer networks and four healthcare providers. This number is probably a conservative estimate, as many more areas are now implementing

under their own steam. A number of trusts are using the data to report regularly about call admissions.

Northern Ireland has rolled the tool out nationally, and Scotland is planning to use it in a national acute oncology pilot.

National supportThe tool meets national recommendations as set out by the National Confidential Enquiry into Patient Outcome and Death (NCEPOD), the National Chemotherapy Advisory Group (NCAG), and acute oncology measures that aim to improve quality and safety for patients.

The Greater Midlands Cancer Network provided continuous support and allowed me time within my network role to develop the tool and roll it out nationally. UKONS have supported the development, pilot and distribution of this tool, and have fully endorsed its use in practice. The NPSA funded and supported the design and pilot of the tool and endorsed its use in practice. The National Cancer Action Team has promoted the tool as evidence of best practice in acute oncology.

The tool is being developed to support paediatric and primary care services, and the group has linked with the Royal College of Nursing and Macmillan. A UKONS survey is under way to identify sites using the toolkit. They will then be invited to complete a questionnaire about the use of the tool, with a view to extending its scope to cover people with cancer who are not on active treatment but are experiencing acute problems. It will also be added to the staff groups who could be trained to use the tool in the future. A comprehensive plan for regular review and evaluation will be developed and agreed upon completion of current developments.

The toolkit was developed by a group of hard-working nurses with the experience and vision to produce a nationally recognised tool. It required patience, determination and tenacity, all of which have been demonstrated in abundance.


Debbie Jordan shares how a new service is reducing unnecessary tests and admissions

Managing cancer-related emergencies


‘ The pilot proved to be extremely successful, with an evaluation proving a reduction in length of stay by 2.5 days’

Further information

Debbie Jordan

Macmillan Acute Oncology Clinical Nurse Specialist

Doncaster Royal Infirmary

07789 741129

debbie.jordan@ dbh.nhs.uk

T he acute oncology service at Doncaster and Bassetlaw Hospitals was launched in September 2011

following funding from the North Trent Cancer Network for a full-time acute oncology clinical nurse specialist (CNS). The aim was to pilot a new service, collect data to support a business case for a permanent service, and to learn from challenges and feedback.

The service is based on a nurse-led assessment and triage model for people who attend hospital with cancer-related emergencies. The service mainly covers accident and emergency and acute receiving areas in each hospital. We provide telephone advice to Montagu Hospital, Mexborough, which has a minor injuries unit. The service runs Monday to Friday, 9am to 5pm, and patients who present out of hours are reviewed the next working day.

Nursing inputI came into post in October 2011 on a secondment. I had a background of nursing people with haematological and gastroenterological malignancies, administering chemotherapy, and dealing with cancer-related emergencies such as neutropenic sepsis, hypocalcaemia and malignant bowel obstruction.

I spent time with the site-specific CNSs to learn more about their services, the different cancer diagnoses and the complications that can occur with each. As the service runs across both Doncaster

and Bassetlaw sites, the site-specific CNSs, lead cancer nurse and lead chemotherapy nurse all contributed to the rota during the pilot period.

Patient alert systemPrior to the service, the hospitals had an alert system in place known as the Patient Electronic Alert to Key-worker System (PEAKS). As soon as a patient is admitted to hospital in an emergency, a text message is sent to the site-specific CNS. While this was of benefit to the CNS teams, not every team could follow their patients up and review them on the same or next day. The acute oncology service therefore uses the PEAKS system, so text messages for all tumour sites are sent to the service mobiles, and the acute oncology nurse will attend and review the patient. If the admission is cancer related, they will offer recommendations based on advice from the site-specific CNS or oncologist, or from treatment pathways in place. If the admission is not cancer related, the acute oncology team advises the site-specific CNS of the admission and they will follow up accordingly.

Team membersThe wider service team includes oncologists, haematologists, lead clinicians from acute medicine and emergency departments, specialist nurses and the lead chemotherapy and cancer nurses. The team developed an acute oncology assessment form, which is used when assessing patients. We use

a ‘red, amber, green’ system to assess toxicities and symptoms, which has been adapted from the triage tool developed by Philippa Jones, Macmillan Network Lead Chemotherapy Nurse, and members of UKONS (see pages 22–23). The form is also used as a data collection tool. Treatment pathways for the acute oncology presentations were also developed.

Pilot resultsThe pilot proved to be extremely successful, with an evaluation proving a reduction in length of stay by 2.5 days. Involvement of an acute oncology nurse also leads to a reduction in unnecessary tests and admissions. We have also seen an improvement in our treatment times for neutropenic sepsis.

We haven’t had the opportunity to conduct a patient experience survey. However, we have received positive feedback from the service verbally, with people expressing relief, for example, that someone has come to see them who knows about their cancer treatment.

The success of the pilot led to the appointment of two acute oncology nurses: myself at Doncaster and my colleague Nicky Godfrey at Bassetlaw. The pilot showed that the majority of acute oncology presentations occur at Doncaster, but it was still felt that an acute oncology nurse at Bassetlaw was essential. Nicky works with the specialist palliative care team. She follows up patients for the site-specific CNS while they are inpatients, so that their own CNS can be confident they are being reviewed regularly.

We plan to work with the network to gain access to electronic patient records to further improve the service. This will help during out-of-hours periods, when the team is not present. We would also like to work towards seven-day working, as our evaluation demonstrated that half of patients attend out of hours. We hope that continued audit and evaluation will support this.

Related informationMacmillan’s Learn Zone has an out-of-

hours toolkit and a video about managing neutropenic sepsis. Visit learnzone.org.uk to access these for free.


Helen Tyler discusses this complication and how education sessions have helped physiotherapists in South Wales

Metastatic spinal cord compression


Further information

Helen Tyler

Specialist Oncology Physiotherapist and Therapies Service Manager

Velindre Cancer Centre

Cardiff

029 2061 5888 ext 6490 bleep 134

[email protected]

M etastatic spinal cord compression (MSCC) is a debilitating complication of cancer that

affects 5–14% people with the disease. It occurs when a primary cancer spreads to the bones of the spinal column and compresses the spinal cord, causing pain and neurological changes below the level of the compression.

Signs and symptoms of MSCC include:• back pain, which is the most

common presenting feature and may be associated with referred pain to the torso or limbs

• reduced muscle power • sensory abnormalities • bowel and bladder dysfunction.

Studies have consistently demonstrated that MSCC is diagnosed late and that a patient’s ability to walk after treatment is directly associated with the ability to walk at time of diagnosis. The prognosis of a patient with MSCC depends on their neurological status at the time of diagnosis.

Around 50% of patients with MSCC present unable to walk, and of this proportion, 80% do not regain ambulatory function. However, of the 50% who are able to walk when they present, 80% regain ambulatory function.

It is therefore imperative to diagnose this condition early to prevent irreversible neurological damage that can affect a patient’s mobility and function. Allied health professionals, particularly physiotherapists working in primary, secondary or tertiary

care, will often be treating patients with the above presentations. They are often at the forefront of responding to the ‘red flags’ and making prompt and appropriate referrals before any permanent neurological damage occurs. This means that surgery can be considered, and steroid prescription and radiotherapy commenced.

Awareness trainingIn 2012, all NHS physiotherapists across the South Wales Cancer Network were invited to a one-and-half hour training session delivered by Helen Tyler and Kathryn Elias, Specialist Oncology Physiotherapists. The sessions were designed to raise awareness, deliver education and provide advice on how to manage a patient with MSCC, including the acute phase and continuing rehabilitation. Each attendee was given a self-study workbook to further develop their understanding and to share with other staff.

EvaluationA total of 265 physiotherapists from the network’s six health boards attended the awareness sessions, along with a small number of other professionals. Evaluation encompassed both delivery style and pre- and post-session delegate knowledge. On a scale of 0–5, 98% of the delegates rated the delivery as ‘4’ or ‘5’, and 82–94% rated the increase in their knowledge as ‘4’ or ‘5’.We plan to deliver the awareness sessions to GPs, district nurses and accident and emergency nurses across the network this year.

Managing urgent careMacmillan Clinical Nurse Specialist Teresa Kua describes a recently established acute oncology service

Acute oncology services play a critical role in managing urgent care when a person with cancer needs it.

The Acute Oncology Service at Imperial College Healthcare NHS Trust covers Charing Cross, Hammersmith and St Mary’s Hospitals. The service is run by myself and Rachel Sharkey, both clinical nurse specialists. The leading clinician for this service is Dr Philip Savage.

Our daily work consists of triaging people with cancer in all three A&E departments, telephone call triaging, and attending medical ward rounds and multidisciplinary team meetings.

While the service runs across three hospitals, the inpatient service is based at Charing Cross. People are encouraged to come to the A&E department there when they have problem. As we are among the first people that patients at A&E encounter, they do comment that they are glad to see familiar faces and someone who knows their cancer history and problems.

Since the service launched in October last year, we have triaged more than 5,000 people with cancer and successfully reduced waiting times and costs by avoiding unnecessary admissions and emergency unit attendances. This has been achieved by arranging urgent outpatient appointments when appropriate and avoiding unnecessary investigations. Our aim is to improve the patient experience.

Outpatient careThe issues that people present with at the emergency unit can often be resolved in an outpatient setting. However, many do not receive adequate information about where to get assistance and have difficulty

contacting professionals. For example, a patient with a blocked naso-gastric tube rang the acute oncology service telephone line. I arranged an appointment at an outpatient clinic and assessed the tube myself, changing it as required. By doing so, the patient didn’t have to go to A&E or spend too much time waiting.

New cancersCancer can occur at any age, but the risk increases as we get older. More than three out of five people who get cancer are over 65, and more than a third (36%) over 75.1 In our service, we often meet older people admitted to hospital after collapsing or falling at home. During treatment, we often find undiscovered medical problems, including cancer. Our service gives advice on necessary investigations, such as biopsies or blood investigations, and provides a link to the oncology service or other multidisciplinary team members. Sometimes, these patients are too frail for investigations or not fit for available anti-cancer treatments. In such cases, we give advice to avoid unnecessary investigations that put patients at risk.

Review We are auditing people admitted with chemotherapy-related neutropenic sepsis and metastatic spinal cord compression, with the aim of improving their treatment pathways by looking at the timeliness of their investigations and treatment.

It’s a privilege having Macmillan adopt our job roles, in terms of education, funding and training. We are excited to have access to the resources needed to support people with cancer and their families.


Further information

Teresa Kua

Macmillan Clinical Nurse Specialist

Acute Oncology Service

Imperial College Healthcare NHS Trust

07825 098302

teresa.kua@ imperial.nhs.uk

Reference1 Macmillan Cancer

Support website. Age, lifestyle, diet and cancer risk. www.macmillan.org.uk/Cancerinformation/Causesriskfactors/Causes/Dietlifestyle.aspx September 2012. (Accessed 22 January 2013.)

More than 60% of people who get cancer are over 65

36% of people who get cancer are over 75

60% 36%

1 2 3 4 5 6

7 98

10

11 12

13 14

15 16

17

18

19 20 21

22

Understanding the PSA testMAC11665, 5th editionA booklet about the PSA blood test for prostate cancer.

Order copies freeVisit be.macmillan.org.uk

or call 0800 500 800.

New

Resources

Answers across 1 Blackcurrant 7 Ruche 8 Surf 10 Enemy 11 Lists 13 Thrill 15 Groups 17 Maize 18 Darts 19 Dame 21 Thing 22 Monkey wrenchAnswers down 1 Bare-legged 2 Ancestor 3 Knees-up 4 Urgent 5 Rosy 6 Nor 9 Full-length 12 Division 14 Hamster 16 Surrey 18 Desk 20 Ago

Getting the most out of information prescriptionsMAC13882Macmillan, the National Cancer Action Team and Cancer Research UK have developed a booklet for professionals to explain the benefits of information prescriptions for people affected by cancer. It contains examples of how the online Information Prescription Service (nhs.uk/ips) has benefited patients and staff.

Pelvic radiotherapy in men MAC13943Pelvic radiotherapy in womenMAC13944These new booklets explain pelvic radiotherapy, its immediate side effects and how these effects can be reduced or managed. They also help readers to identify and get support with potential late effects after pelvic radiotherapy, and promote healthy lifestyles.

Updated

Cancer in the workplace DVDMAC12569, 2nd editionThis resource is designed to help employers, managers or HR staff to manage employees affected by cancer. It contains a booklet and DVD.

Let’s talk about youMAC13009, 2nd editionRedesigned and updated, this guide is written by and for young carers aged 12–18 who are looking after someone with cancer. It features quotes from young carers and gives tips about dealing with emotions and relationships.

Living with body changesMAC12525, 2nd editionThis booklet explains how cancer treatments can affect the way your body looks, works and feels, and suggests ways of adapting to these changes.

Clues across 1 Tart berry used in jam 7 A pleated frilling 8 Waves breaking on a shore 10 A hostile force 11 Catalogues of data 13 A feeling of extreme pleasure 15 Cliques or factions 17 Sweetcorn 18 Pub game 19 A noble lady 21 An inanimate object 22 Spanner with adjustable

jaws (6,6)

Clues down 1 Without stockings (4-6) 2 Forefather 3 Lively party for Mother Brown?

(5-2) 4 Requiring speedy action 5 Pinky coloured 6 Neither 9 Unabridged (4-6) 12 A boundary or partition 14 Fat-cheeked rodent 16 English county 18 A school work-table 20 In the past

Breaking down the language barrierThe Macmillan Support Line has a translation service in over 300 languages. It connects people affected by cancer to an interpreter to help them get the information they need. We have produced a series of promotional posters in 19 different languages to advertise this service. You can download and print these from be.macmillan.org.uk

Crossword

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Documents

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