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for Macmillan professionals

Issue 49 summer 2009

In this issue

Stephen GuyManager, Macmillan Welfare Rights Service

Focus on survivorship

Macmillan Voice summer 2009

We welcome feedback!Let us know your views on Macmillan Voice.Email [email protected]

Writers and news wantedMacmillan Voice is for you. It’s whereMacmillan professionals can share newsabout their work, activities and successes, so please tell us what you’ve been doing.

We’re also looking for new writers tocontribute articles. You can write about the issues that matter to you and share your knowledge with other Macmillanprofessionals. You don’t need to be anexperienced writer to get involved inMacmillan Voice. We can help you turn your idea into a news item or feature. All you have to do is get in touch with our Editor Rosie Cotter [email protected] or call her on 020 7920 7212.

Maximum word counts: news storiesup to 300 words; features up to 500 words. Please also send usphotographs if possible, using thehighest resolution on your camera.

Note: we hope that you will share news and learning, but we are not able to promotebooks that you may have had publishedoutside of the NHS.

Contributors this issue Sue Acreman | Rose Amey | Alison AuthersCarrie Biddle | Stephen Guy | Jo HeathStephen Hindle | Julie HooleBrenda Mitchell | Emma MitchellDebbie Pearson | Sarah RushbrookeSuma Surendranath | Christine WardJenny Wilks | Noeline Young

Editorial TeamRosie Cotter, Genevieve Osei-Kuffour, Sajjad Shah, Katie Woolley

Editorial BoardCharlotte Argyle, Lifecare Transition ManagerKathy Blythe, Macmillan Development Manager, EMNEMargot Buchanan, User RepresentativeHelen Foy, UK Postholder Support and Development Manager, EMNEAlison Hill, Nurse Director, South West London Cancer NetworkBeverly Hurst, Macmillan Gynaecology/Oncology CNSKarin Jacobi, Senior Marketing OfficerAnna Leibowitz, Information Development ManagerYvonne McKenna, Macmillan Lead Cancer NursePeggotty Moore, Macmillan Specialist RadiographerEsther Murray, Acting Consultant in Psychosocial OncologyHeather Nicklin, Macmillan Specialist Palliative Care Social WorkerTerry Priestman, Consultant Clinical OncologistChris Sansom, Macmillan Development Manager, LASERTracy Williams, Senior Information Development Nurse

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© Macmillan Cancer Support 2009. ISSN 1361-9020.No part of this publication may be reproduced without thepermission of Macmillan Cancer Support. Macmillan CancerSupport, registered charity in England and Wales (261017) and in Scotland (SC039907). Isle of Man charity number 604.

MAC5772_06_09

ContentsNews

3 The latest news from across Macmillan, including the Late Effects project, our successful door-to-door fundraising initiative, and award-winning Macmillan teams and volunteers

Features9 A force for change

Campaigns update

10 ProfileStephen Guy, Manager, Macmillan Welfare Rights Service

11 Knowledge-sharing exchange to the United States A trip abroad gives Julie Hoole, Macmillan Clinical Nurse Specialist, a chance to reflect on successes back home

12 Study explores the work of Macmillan occupational therapistsHow Macmillan occupational therapists see their role, and whatimprovements could be made

13 Oncology social work in an acute hospital settingNo day is the same for Macmillan Social Worker Rose Amey

14 The benefits of dedicated speech and language therapyDeveloping speech and language therapy services for people with cancer

Focus on survivorship15 Macmillan’s strategy for survivorship

What Macmillan is doing to improve care and support for cancer survivors

16 Group approach offers survivors a valuable form of support Two different kinds of group therapy for people in the post-treatmenttransition of their cancer experience

17 Developing cancer rehabilitation standards in WalesStrategic standards aim to bring together people who can advise on rehabilitation

18 Lymphoedema and its effects on survivorshipLymphoedema in breast cancer survivors

19 Helping survivors take greater control of their lives Supporting people to develop self-management skills

20 Two pilot sites work to improve the health and lifestyle of survivorsTwo health and lifestyle programmes are trialled as part of the National Cancer Survivorship Initiative

22 Money Matters in ScotlandAn exemplary partnership raises millions in benefits for people affected by cancer

Getting involved23 Key challenges, courses and events for your diary

Macmillan resources24 New Macmillan resources available now

Macmillan was proud to sponsor this year’s International Journal ofPalliative Nursing Awards.

The awards celebrated the outstandingwork carried out by palliative nursesworldwide. They were held in London inMarch, and were hosted by Peter Black,Editor of International Journal ofPalliative Nursing, and Professor JessicaCorner, Chief Clinician at Macmillan.

Macmillan professionals wereamong the prize winners on the night.Macmillan Palliative Care ClinicalNurse Specialist Ann Brennan, who

works out of ‘Y Bwthyn’ in Bridgend,won the Palliative Care Nurse of theYear Award, while the Children’sHaematology Oncology team at RoyalBelfast Hospital came second in theMultidisciplinary Teamwork category.

The Lifetime Achievement Award,which was sponsored by Macmillan, wasawarded to Kathleen Defilippi. Kathleenhas been involved in the provision ofpalliative care since 1983, when shefounded the South Coast Hospice homecare programme in South Africa’s ruralKwaZulu-Natal.

A six-month trial of door-to-door fundraising has recruitedover 9,000 new supporters for Macmillan, who havepledged to donate over £1million every year. This makesdoor-to-door fundraising one of our most successful and cost-effective forms of supporter recruitment to date. The donations pledged will help pay for vital services forpeople affected by cancer.

The fundraising campaign involved teams of professionalfundraisers (wearing Macmillan-branded clothing andcarrying identification badges) calling at potential supporters’homes to ask if they would like to support our work through a monthly donation. I know some of your patients have askedwhether these fundraisers are genuine and if Macmillan doesthis form of fundraising – you can now confidently say we do.

Our fundraisers called at over 100,000 households. As well as recruiting a lot of new supporters for Macmillan,they have also been busy raising our profile within localcommunities and promoting our services to those who need our support.

On the whole, this fundraising campaign has beenpositively received by the public. A newly recruited supporterin Oldham sums up exactly why door-to-door is an effectiveform of fundraising for us: ‘I think Macmillan is fantastic andI've been intending to donate for sometime, but you know, it's one of those things, I just never got round to it and whenthe lad knocked on my door, I thought it was a perfectopportunity to put my money where my mouth is.’

Further informationKelly MaklowiczSupporter Recruitment Manager020 7840 [email protected]

News 3


New form OF fundRaisINg

rEcRUitS over 9,000supPORtErS

2009 International Journal of Palliative Nursing Awards

Door-to-door fundraising proves successful

Ann Brennan receives her award from aProstrakan representative

News4


The Macmillan cancer unit at Leighton Hospital in Crewe won the ‘Best Commercial Project’ award at theCheshire District Built in Quality Awards Scheme 2009.

The unit, which opened in May 2008, provides outpatientclinics for people with cancer to see their consultant ormultidisciplinary team member, and for chemotherapytreatments. It also provides support services to people affectedby cancer, including a Macmillan information and support unit.

The environment is designed to be therapeutic andincludes a courtyard for people to relax and have their ownspace. Macmillan were involved in many stages of the projectincluding funding, development, project management,

and sourcing users’ views on the initial design.Macmillan is currently working with the Department of

Health to develop a kitemark for good cancer facilities. The kitemark will be the first national cancer standardbuilding award in the UK and will be launched in 2010.

Further informationJulie AtkinMacmillan Development ManagerCheshire and Greater Manchester07834 [email protected]

Macmillan cancer unit celebratedfor its quality and design

Correction

In the last issue of MacmillanVoice we featured an article on page 16 about implementingnurse prescribing across acommunity. This article waswritten by Macmillan ClinicalNurse Specialists Mary McSweeney,Pat Jacob and Ellen Goodall, as a reflection of their experience of implementing non-medicalprescribing.

Dedicated conference forpalliative care social workersEach year the Association of Palliative Care Social Workers holds a conference for its members. Thisyear the Midlands region will behosting the conference at LincolnUniversity from 1–3 September 2009.

The conference is an excellentopportunity for social workers working in palliative care to get together anddiscuss current issues. The associationoperates nationwide and each area hasregional representatives who attendregular meetings that include an elementof training. Social workers in palliativecare are often lone workers or basedwithin a medical team. The association

offers its members support from peersand is particularly useful to new workerscoming into the field.

If you are a registered social worker in the field of palliative care,please contact the MembershipSecretary Sue Smith [email protected], or you can contact the conferencecommittee via Heather Nicklin,Macmillan Specialist Palliative Care Social Worker, [email protected]

See page 13 for more informationon oncology social work.

News 5

The Royal College of Nursing’s 15th annual oncologyconference provided an excellent forum for Macmillanprofessionals at Northampton General Hospital to showcasetheir work.

The conference theme was ‘Collaboration in a time of change’, and oncology ward nurses along with threeMacmillan professionals from the hospital attended.

Macmillan Social Care Coordinator Jan Bolton gave apresentation and Macmillan Lung Cancer Nurse SpecialistLisa Wells presented a poster on her work (a display postercommunicating work or research).

My colleague Karen Lemoine, Senior Radiographer, and I (a Macmillan Head and Neck Cancer Nurse Specialist),presented a poster for the first time. We were unexpectedlyawarded a prize of an oncology book donated by thepharmaceutical company Hospira UK. It was given for themultidisciplinary approach we took to our weekly review clinicfor people undergoing radiotherapy for head and neck cancer.

We set the clinic up in September 2007 and haven’tlooked back since. Our approach allows patients and carersto have a holistic assessment and review during and aftertheir treatment. We use an evidence-based tool and worktogether to improve standards of care. At the conference wereceived a lot of interest and feedback from other delegates.

The conference was held over two days in January atChester Race Course, and was organised by ClatterbridgeCentre for Oncology NHS Foundation Trust and the RoyalCollege of Nursing.


Award-winning Macmillanprofessionals at NorthamptonGeneral Hospital

Macmillan Occupational Therapist Julie Reece was awardedthe ‘Positive About Patients’ award by Northampton GeneralHospital for making an outstanding personal contribution inhelping one of her patients.

When an ambulance was unable to take a dying patienthome due to red tape rules, Julie borrowed a wheelchair,jumped into her car and drove the young woman herself,granting her last wish to die at home.

The annual awards, held in March, recognise theachievements, hard work and gestures made by hospitalstaff who make a real difference to people when they need it most.

Julie has worked in her current role on the oncology and haematology ward for a year. She helps patients withlife-limiting illnesses back into their homes once they aredischarged from hospital. She also works two days a week at Cynthia Spencer Hospice and has been an occupationaltherapist for over 20 years.

Julie said: ‘Part of my role is problem-solving. I alwayslike to find a way around an obstacle because I have to goall out to improve the quality of people’s lives. I won’t takeno for an answer.’

Macmillan professionals shine at annual oncology conference

Outstanding personal dedicationearns award for Macmillanoccupational therapist

Further informationPauline GibbingsMacmillan Head and Neck CNS01604 [email protected]

Further informationJulie ReeceMacmillan Occupational Therapist01604 [email protected]

ObituaryDerek Spooner – cancer environment expert

Derek Spooner, the man whoestablished Macmillan’s expertise incancer buildings, died peacefully athome on Tuesday 21 April. Somepeople at Macmillan may not havehad the opportunity to meet Derekpersonally, but he was one of thegiants of the charity in earlier days.

Those who knew him will rememberamong his many virtues – his wisdom,kindness, and the time he had foreveryone he met, as well as his deepempathy for people with cancer and those who cared for them.His influence on the environment of palliative care remains to this dayand, to echo Christopher Wren’sepitaph, ‘if you seek his monument,look around you’.

Derek is survived by his two sons,daughter and several grandchildren.

6 News

Group educational grant helpsMacmillan radiographersIn December 2007, a number of Macmillan radiographersattended Macmillan’s first UK-wide event, ‘Supporting andengaging professionals’. We were particularly inspired bya presentation about leadership skills from Sue Machell, a King’s Fund Lecturer, which left us wanting moreopportunities to develop this side of our role.

We found ourselves reflecting on the usefulness andstructure of our own twice-yearly meetings for Macmillanradiographers. These started about 10 years ago whenMacmillan began funding information and support posts for therapy radiographers. Membership to our meetings now includes non-Macmillan professionals working in asimilar role. Having ascertained that we would be eligible for funding from a new Macmillan group educational grant, I contacted the King’s Fund to find a facilitator to organise a one-day workshop for us. I then approached my regionalMacmillan Learning and Development Manager, JulieLatimer, for assistance.

Entitled Leadership Skills for Information and SupportRadiographers, the workshop was held last October inLondon and was facilitated by Judy Taylor, King’s FundSenior Fellow. A key element of the day centred on the

Did you know that Macmillan Voiceis available electronically?

Simply log on to the Learn Zonelearnzone.macmillan.org.uk and click on Professional Tools andResources, then MacmillanInformation Resources. Editionsdating back to 2006 are availiable.

importance of Myers-Briggs personality types within our roleas leaders. This was explored by completing individualquestionnaires to identify our own type, and by doing somepractical group exercises. These were hugely entertaining,but more importantly they demonstrated how and why wereact to our patients and colleagues in different situations.

The day was deemed a great success and attendance was double that of our previous meetings. It was also good to share some of our learning and developmentopportunities with non Macmillan-funded peers. All feedbackwas very positive.

Futher informationSarah PerrelleNational Information and Support RadiographersGroup Coordinator and Macmillan Radiographer North Middlesex University Hospital 020 8887 2448 [email protected]

Macmillan Voice online

When young entrepreneurs Megan and Elizabeth O’Shea set up their ownChristmas card company – Megan &Elizabeth Just Kidding – the originalintention was to sell cards to earnpocket money. Instead, the identicaltwins decided to donate all the profitsto Macmillan, having learned about us at school and knowing that theirgrandpa had cancer.

Since setting up their business threeyears ago at age six, it has grown toinclude key rings and calendars. Thegirls have now raised over £4,000 for Macmillan.

The girls have also spread the wordabout Macmillan and have securedextensive media coverage in their localnewspaper. They recruited their schoolto take part in The Big Hush (wherechildren were sponsored for everyminute they kept quiet) which raised£3,244. When the senior school foundout how well they had done, the sixthform also chose to support Macmillanby holding a fireworks night raising£300.

The award winners are:Sir Hugh Dundas Volunteer of the YearPeter Smith-NichollsMavis ButlerChris SeawardRhoda and Tony KeyLeslie McAdooGerald White

Young Macmillan Cancer ChampionDaniel SavageMonty, Freddie, Gus and Ollie PayneElizabeth and Megan O’Shea

Paul O’Shea, father of Megan andElizabeth, said of the event: ‘It celebratedthe hard work and dedication of all yourvolunteers and was nothing short of abarrage of brilliant and uplifting stories.’

Do you know a fantastic volunteer?There are many ways to thank yourvolunteers for the amazing work they do. Find out more by [email protected] go to www.macmillan.org.uk/volunteer

News 7

Macmillan celebrates volunteers


Macmillan Chief Executive Ciarán Devane with Megan and Elizabeth O’Shea

Macmillan celebrated some of its most dedicated volunteers at the Macmillan National Volunteer Awards in March

‘It celebrated the hard work and dedication of allyour volunteers and wasnothing short of a barrageof brilliant and upliftingstories.’

The girls’ hard work and dedication to Macmillan was recently celebrated at the Macmillan National VolunteerAwards.

The awards brought together a rangeof exceptional volunteers (from 9 to 81years old) who were recognised for theoutstanding contributions they make to help people affected by cancer. They contributed in many different ways– whether raising huge sums of money,speaking up for Macmillan, or helpingto deliver our services.The event was a huge success thanks to a fantastic host and venue, greatsupport from all corners of Macmillanand, of course, the award winnersthemselves, who were an inspiration to all.

The Late Effects project

Macmillan has been working with the Department ofHealth (DH), the National Cancer Action Team and asizeable group of people living with the long-term effectsof radiotherapy treatment for breast cancer.

The group, who are in their late 60s or 70s, were treatedwith radiotherapy in the 1980s and are likely to have developedsymptoms within five years of treatment. These symptomsvary, but usually involve several or all of the following:• fibrosis in any of the irradiated tissue• pain in the irradiated area• pain in the hand and/or arm on the side

of the body that was treated• breathing problems • bone fractures in the collarbone, ribs and/or arm• severe lymphoedema.

Without early intervention, over the years these symptomswill have progressed to include:• paralysis in the shoulder, hand and/or arm• non-healing ulcers in irradiated areas• tissue necrosis• severe lung problems• bone necrosis• heart problems• on occasions, radiation-induced sarcoma.

These injuries led to changes in the way radiotherapy wasadministered and such side effects have all but disappearedfrom the modern day experience.

The Late Effects project team have worked with RAGE(Radiotherapy Action Group Exposure) to understand whatsupport should be offered to their members, and whatlessons can be learned from people living with the lateeffects of cancer treatment.The pilot includes four elements:• a one-off payment to help with daily living• signposting to other services that may be helpful

• providing access to specialist health services• raising the awareness of health professionals about

the late effects of cancer.

Progress to date – grant payments and signpostingSince October 2008, the team have gathered feedback from over 100 RAGE members. By February 2009, we had received 150 grant application forms and had given out 140 grants. We have gathered evidence on how lateeffects have affected peoples lives, and what may help toimprove the quality of life for this group. RAGE membershave already reported changes that they have been able tomake since receiving their grants.

This part of the project is currently being evaluated to show the DH:• ways in which they could support people with the late

effects of cancer treatment• how Macmillan can develop and shape new services that

are responsive to the needs of people affected by cancer.

Specialist health checksOne hundred and twenty-six RAGE members have indicatedthat they are interested in a specialist health check. Invitationshave been sent to a number of cancer centres across thecountry asking them to set up a one-off pilot clinic (forapproximately five patients) where RAGE members couldcome to see an oncologist, pain management specialist andoccupational therapist. We are asking the specialists to agreeon a personal care plan, which would aim to identify local servicesthat can provide ongoing care and support after the clinic.

It is hoped that these pilot clinics will gather enoughinformation to show the clear benefits of a specialist healthcheck. This would enable RAGE members to get better accessto local services and highlight any inequalities of serviceprovision across the UK. If there is enough information tosupport this, the team will provide evidence to the DH forproviding a network of clinics at specialist centres across theUK, which all RAGE members will be able to access.

Further informationJo HeathLate Effects Project WorkerMacmillan UKO020 7091 2043 [email protected]


‘Your generous cheque will make thedifference in helping to meet some of thecosts incurred as a result of my radiationdamage and also to improve my qualityof life.’ RAGE member

News8

Jo Heath and Occupational Therapist Jill Cooper at a specialist health clinicsession at the Royal Marsden

A new pilot exploring how we can best support people living withthe late effects of cancer treatment

Sexual relationshipsIn May, we launched our sexual relationships campaigntargeted at health professionals and people affected bycancer. We aim to raise awareness of how cancer and its treatment affects sexual relationships. We have developedan online toolkit for health professionals which covers topicssuch as gaining confidence to raise the issue through variouscommunication techniques. This is available on the LearnZone learnzone.macmillan.org.uk

Our existing patient information and online videos forpeople affected by cancer are available on our websitewww.macmillan.org.uk/sex These involve healthprofessionals addressing some of the issues surroundingsexuality and cancer. Themes include body image, medicaloptions, and how to approach clinicians. One of the keymessages is to encourage people with cancer to talk to theirhealth professional about the problems they areexperiencing. For this reason, we have been working with the Learning and Development team to make sure we cansupport health professionals to address these issues.

We have a range of patient information booklets onsexuality and cancer which can be ordered frombe.macmillan.org.uk

Hospital car parking chargesMacmillan has been campaigning against hospital carparking charges for people with cancer since 2004. We havehad national successes in Wales, Scotland and NorthernIreland. In Wales, hospital parking has been free since April2008, except where Trusts have external contracts in place.These Trusts will introduce free parking by 2011. In Scotland,free parking came into effect on 31 December 2008, and in Northern Ireland parking is now free for people undergoingchemotherapy and radiotherapy. This just leaves England.

After researching hospital car parking policies inEngland, we have identified the worst offenders. These are hospitals that are not complying with Department ofHealth guidance to offer free or reduced parking to patientsrequiring regular treatment. Our research also shows thathospitals are not telling people about their reduced or freeparking policies.

We will be continuing our national campaign asking thegovernment to end hospital car parking charges for people

with cancer across England, as per the othernations in the UK.

Travel insurancePeople with cancer often find it difficult to obtain adequate and affordable travelinsurance.

Some insurers refuse to cover a cancerdiagnosis and others are prohibitivelyexpensive. Patients are often forced to shoparound extensively and the process can beextremely time-consuming and distressing.

We believe people with cancer should be ableto buy fairly-priced travel insurance which coverstheir cancer diagnosis. We are working withindustry bodies and other cancer charities toimprove the current situation. By summer 2010,we will be able to signpost people with cancer toinsurers who can provide appropriate cover at afair price.

‘Trying to keep our physical relationshipactive was one of the worst parts of mycancer journey. I had no idea that mybody and emotions would be affected inthis way. If I’d been spoken to about theeffect my cancer and treatment wouldhave on sex and my relationship, I wouldhave been better equipped to cope with it all.’Personal account from Giette Gudge, Kettering


WeCampaign

forchAnGe

A force for change 9

Michelle Rowley, Campaigns Manager

Campaigns update

For more information onMacmillan’s campaigns and how to get involved, please contact us at [email protected]

Profile

Further informationStephen GuyMacmillan Welfare Rights ServiceAdult's wellbeing and HealthDurham County CouncilThe Rivergreen Centre Aykley Heads, County Durham DH1 5TS 0191 [email protected]

LocationMacmillan Welfare Rights Service,County Durham, Durham County Council

In postPrincipal with Durham County Councilsince June 2003, and managing theservice since May 2008

Stephen GuyManager, Macmillan Welfare Rights Service

What is your current role?I am employed as a Principal Welfare Rights Officer with Durham County Counciland I manage the Macmillan Welfare Rights Service in County Durham. I have 16 years’ experience practicing within a welfare rights setting.

Why was the post created?In September 2006, I secured approval from Durham County Council to explorepartnership-working with Macmillan to provide a bespoke welfare rights service for those in the region affected by cancer. I was motivated by the extent of under-claiming of benefits by people affected by cancer, their complex and immediateneeds, and the high incidence of cancer in County Durham (where incidence rateshave been consistently higher than the national average). A successful bid was made to Macmillan to fund three welfare rights officers and the service wasoperational by June 2008.

What have you been involved with since you started in post?Our service has grown very quickly, and we have generated nearly £1.5million in benefits. We have gained some excellent outcomes for clients, largely as aconsequence of the commitment, flexibility and skills of the three officers in post.

I have become a member of various steering groups concerned with the provisionof cancer services in County Durham, which has provided me with an opportunity to influence priorities. For example, I sit on the Living With and Beyond Cancer/Specialist Palliative Care Strategic Group. One of our targets is to ‘ensure all peopleaffected by cancer are given information about their rights, what financial help isavailable (including welfare benefits) and how to access that help’. I am able to help achieve this through increased promotion of our service and staged roll-out to maximise the uptake of benefits.

How does the partnership-working contribute to the service? Managing this service has facilitated some excellent opportunities for furtherpartnership-working with the acute and primary care trusts. It has createdopportunities to provide better-integrated services for people affected by cancer. A key outcome from this has seen patients, their families and carers accessingfinancial advice at an appropriate time, and in a setting of their choice. I consider this imperative in accordance with the Cancer Reform Strategy.1

Do you work with other groups outside your service?In County Durham, we enjoy effective relationships with the Macmillan cancerinformation and support centres. Our services complement each other andprovide added value to those who access them. The opportunity to engage with staff and volunteers within these centres has proved very enjoyable. The challenge of meeting the urgent and varied needs of our clients often provides the greatest rewards in terms of job satisfaction.

How would you like the role and service to develop?We have a service delivery plan with defined targets. An integral part is to contributeto Macmillan’s ambition to reach and improve the lives of everyone living withcancer. As our service cannot achieve this alone, we have started to providetraining courses on benefit awareness to social care and health professionals, and Macmillan volunteers. The intention is to provide the knowledge necessary toidentify potential benefit entitlement and, if appropriate, the skills to help peoplecomplete basic benefit application forms. This information can then be passed onto patients, families and carers, maximising the reach of our service. This approachwill supplement the provision of advice and information offered directly to peopleaffected by cancer.

10


Reference[1] Cancer Reform Strategy, Department of Health2007.

Love your job? Would you like to share what you do with other Macmillanprofessionals? Then please email the editor [email protected] to findout more about being profiled for Macmillan Voice

Vocational exchange 11

Knowledge-sharing exchange to the United States

I have given many presentations to voluntary groups as a Macmillannurse over the last 10 years, but itwas following my talk ’what is headand neck cancer?’ at the WakefieldRotary Club, that I was invited toapply for the Rotary Foundation’sGroup Study Exchange (GSE)programme to Southern California.

What is GSE?The GSE programme, run by RotaryInternational, provides the opportunityfor a unique cultural and vocationalexchange for young professionals agedbetween 25 and 40. The programmeprovides travel grants for a team tovisit another country and observe howtheir own professions are practicedabroad. Participants develop leadershipabilities and share skills and knowledge,benefiting both professionally andpersonally. For more information go to www.rotary.org

What I sawMy ‘vocational’ time on the programmewas spent looking at the treatment ofhead and neck cancers and discoveringwhether the treatment modalities arethe same as in the UK. I also looked atwhether specific treatment guidelinesand pathways exist, and whether theyare utilised effectively by clinicians andhealth providers.

I had the chance to spend time intwo oncology centres – City of Hope, a National Cancer Institute-designatedComprehensive Cancer Centre, and theLoma Linda University Cancer Centre.It was interesting to see that non-surgical oncology was delivered in avery similar fashion to the UK. Manyaspects of surgery were also similar –although it was gratifying to note thatsome of my own team’s well-established techniques were stillaspirational here.

A major difference was the way in which multidisciplinary teams worked.Essentially the UK model of healthcaredoesn’t exist in the US and the treatmentdecision was often the sole responsibilityof the primary healthcare professional(sometimes not even that of the oncologycentre). The insurance or HMO-basedsystem of healthcare provision in USwas an expected difference. It was veryclear that while (arguably) a choice ofoptimal treatment was available forthose with adequate insurance (or hugepersonal finance), this was not the casefor a large ‘underclass’ population.

ComparisonsI found competition rather thancooperation to be a bi-product of theinsurance system. While individualareas of excellence can be achieved,there seemed to be little in the way of health promotion and diseaseprevention. Treatment guidelinessuggested by the National CancerInstitute would be overridden by’freedom of practice‘ for medical staff.

Equity of service for all is something of an unknown concept in the areas I visited. Medical and oncology centresdo not appear to share their data.

An equivalent role to the Macmillanspecialist nurse does not exist inSouthern California. The nursepractitioner is their most senior nurse. I identified a massive gap in the patientpathway, particularly in the areas ofsupport and specialist advice ontreatment options and symptomcontrol. There is clearly a need for

specialist nurses, which interestingly wasidentified by the teams I met when Iexplained my role in the UK.

EvaluationThis was a fascinating and unexpectedexperience. Although flattered by a joboffer, I can see clearly how advancedwe are in many of the less-publicisedcancer services in the UK. I have comehome excited by the challenges aheadof me here in the UK, in continuing todevelop our first-class head and neckcancer service.

Look out for Julie’s report on her trip to Libya in the next issue ofMacmillan Voice.


‘While individual areas of excellence can beachieved, there seemed to be little in the way ofhealth promotion anddisease prevention.’

Further informationJulie HooleLead Macmillan Head and NeckCancer Nurse SpecialistMid Yorkshire Hospitals NHS Trust01924 [email protected]

Julie at the Palm Springs Rotary Club

A trip to the US gave Lead Macmillan Head and Neck CNS JulieHoole a chance to reflect on the success of her own service

Occupational therapy12

Study explores the work ofMacmillan occupational therapistsI was appointed as a Macmillanoccupational therapist (OT) in 2004and was intrigued to find out aboutthe work of other Macmillan OTs. Whilst previous studies examinedthe role of Macmillan nurses andMacmillan GP facilitators, none hadexplored that of Macmillan OTs.

Developing the studyAs part of my MA in IndependentPractice (Health) I conducted anexploratory survey into the role of Macmillan OTs. Three questionsformed the basis of this survey:• what are the working practices and

employment profile of Macmillan OTs?• what support mechanisms are

available? • does working with the charity have

any particular bearing on practice?

At the time of the study (completed inAugust 2008), Macmillan funded 64OTs, comprising fewer than 2% ofMacmillan health professionals.I developed a questionnaire which allowedquantitative and qualitative analysis. A postal survey of 60 Macmillan OTsreceived a positive 68% return rate.

Findings: working practices of Macmillan OTsThe majority of Macmillan OTs provideservices to the adult population.Respondents’ employment spans acuteand primary care trusts and hospices.Most therapists are employed full-time,66% work as sole practitioners of OTwithin multidisciplinary teams, and justover half work without support staff.

Their experience of employmentencompasses a broad spectrum interms of the grading of posts and theirlocation, role and function. Services are

provided at patients’ residences, and atinpatient, outpatient, hospital, hospice,community and day care centres.

Association with MacmillanQualitative data analysis affirmed thatthe association with Macmillan has asignificant influence on their experienceand practice. OTs felt the title broughtincreased recognition at work amongstaff and patients. They can accessfunding for their own professionaldevelopment and patient grants,enhancing the service they are ableto provide. The Macmillan role also enabled OTs to work moreautonomously and be involved in role-development activities, research,audit and training. They report beingable to apply specialist skills and offera holistic service.

Recommendations• Macmillan should continue to

facilitate opportunities for specialisttraining for Macmillan OTs.

• A formal network of Macmillan OTs would enable practitioners toengage with and support one another.This would be especially helpful for newly-appointed OTs, to helpcombat feelings of isolation.

• Macmillan OTs should promote their work at every opportunity.

• Macmillan should market thecontribution of Macmillan OTs more actively, possibly through collaboration with the College ofOccupational Therapists.

• Further studies would extend theknowledge and understanding ofMacmillan OTs’ roles and patients’ andcarers’ experiences of their services.

Taking it forwardI have disseminated the report toMacmillan, the participants, the Collegeof Occupational Therapists, and I ampresenting a paper at their nationalconference in June.

This research has providedMacmillan with evidence to support the learning and development of OTs.A 'community of practice' has beenoffered to OTs, and Macmillan will beexploring ways to further support thisgroup. A copy of the report can beobtained by contacting Debbie Pearson.


Further informationDebbie PearsonSenior Lecturer/Professional Practice PlacementCoordinator (Occupational Therapy) Faculty of Health & Life Sciences, York St John University, York YO31 [email protected] or [email protected]

Debbie’s patient Charlie works on balance skills as part of a home rehabilitation programme

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Oncology social work 13

Macmillan Social Worker Rose Amey explains how social work in an acute hospital setting crosses traditional social work boundaries


Oncology social work in anacute hospital setting

People with cancer are not all previously well people whosuddenly become unwell. Some have multiple pre-existingmedical problems, mental health difficulties, learningdifficulties or physical disabilities. As a Macmillan socialworker, I offer or facilitate a range of services includingpractical, psychological, spiritual and financial support topeople affected by cancer. I meet with adult patients at all stages of their experience of cancer, from diagnosis,through to treatment, remission and sometimesreccurrence of disease, including discharge from inpatientperiods and end-of-life care. The acute hospital settingalso includes protection of children and vulnerable adults.

My philosophy is that individual responses to cancerrequire holistic and accurate assessment. This is to maximisethe patient’s own strengths and skills at a time when theymay feel immobilised by their diagnosis. I believe involvingpatients in their own responses to the disease enables themto better cope with any outcomes.

The landscapeI am based at the new Fortuneswell Cancer Unit at DorsetCounty Hospital which is situated in a largely rural area withlimited public transport infrastructure. There is a significantamount of unemployment, poverty and homelessness in thisarea. Although many patients are treated on-site, some haveto travel to other hospitals in the region for treatment, tests,or surgery, sometimes involving long distances to majorcancer centres.

Issues that commonly precipitate a referral to me are loss or reduction of income, concern about perceived loss of roleas a carer, parent or partner, mortgage and debt problems,employment issues and welfare benefit problems. I regularlymake applications for Macmillan Grants: sometimes foreveryday but necessary things, frequently for travel costs forpatients and their visitors, and occasionally for nice thingsfor people dealing with protracted and debilitating therapy.Discharge planning, implementation of care packages andapplications for funded care (at home or in a nursing homesetting) also take up much of my time. I am also at times a non-medical advocate who understands some of themedical issues involved.

Thankfully there is no typical day or patient, and mostpatients enjoy accepting responsibility for their ongoing care.I benefit greatly from good working relationships with on-site

medical staff of all grades and disciplines. This helps me to provide the best support for patients and their families. As we have no designated cancer ward, I work with staff on virtually every ward in the hospital and liaise daily withthe site-specific nurses and specialist palliative care nursesand I also have support from the Macmillan dietitian.

Working with multiple teamsI attend a number of multidisciplinary meetings which help me to understand where the patient is on their cancerpathway and what their treatment plans are. The meetingsallow me to access a number of disciplines at one timeenabling me to prioritise my interventions. Positiverelationships with the local primary care trust and the JosephWeld Hospice also enable me to respond in an appropriateand timely way to requests for support for end-of-life care inthe patient’s place of choice.

Ongoing challenges include keeping abreast of legislation,understanding new national and local policies and updatingmy own database of statutory and voluntary services. I alsoneed to keep up-to-date with current research, specificallythat which demonstrates service users’ priorities.

Related informationFor more information on social care, check out our Social Care Directory and JournalWatch on the Learn Zone learnzone.macmillan.org.uk

Further informationRose AmeyMacmillan Social WorkerDorset County Hospital 01305 [email protected]

‘I believe involving patients in their own responses to the disease enablesthem to better cope with any outcomes.’

‘Thankfully there is no typical day or patient, and most patients enjoyaccepting responsibility for theirongoing care.’

Speech and language therapy14

In July 2005, we trialled a Macmillan-funded project postto investigate the need for designated speech andlanguage therapy (SLT) at an oncology/specialist palliativecare service.We wanted to:• review the current service provision for people with head

and neck cancer• identify the needs of people with non-head and neck

cancer who would benefit from SLT intervention • explore the role of SLT in specialist palliative care • establish a designated SLT service for local hospices.

The service was trialled over a 18-month period andevaluated at the end of the project in June 2007. A 16-month extension was funded by the hospital trust to allow for further data collection and evaluation.

Users’ views brought about service revisionA service evaluation highlighted an inequity based on thetype of cancer people presented with. Although a specialistspeech and language therapist saw people with a diagnosisof head and neck cancer, people with other types of cancerdid not have access to this service. Hospices received apiecemeal service as part of the generic community caseload.There was a large variance in the level of knowledge andskills of cancer treatment among community SLTs seeingpeople with cancer. Therapists could go a long time withoutseeing anyone with cancer and therefore education andtraining related to cancer was not viewed as a priority. SLTsfelt they 'did their best' with the basic knowledge they had.

We surveyed 72 people with head and neck cancer toidentify their perceptions of access to the specialist service.Their responses were measured against current nationalguidelines relating to when patients should be seen.1, 2

The audit identified times when patients felt they neededmore support and information. This resulted in a revision of services to people with laryngectomy, weekly telephonereviews for people finishing radiotherapy, and the trial of a patient support group.

The ‘Recovery Club’With a Macmillan Grant, Emma piloted a support group forpeople with dysphagia following treatment for head andneck cancer. It took place near the hospital on the day of thefollow-up clinic so participants could attend the group beforetheir appointment. Feedback indicated the sessions hadhelped participants to address many practical and quality-of-life issues they encountered, and reduced their feelings ofisolation. Emma secured further funding from the ‘friends of the hospital’ to support the group.

Beyond head and neck cancerCarrie promoted SLT and forged links with community Macmillanteams, hospices and the hospital palliative care team. Sessionswere trialled within a palliative care combined clinic.

Referrals of people with cancer to speech and languagetherapists increased by 64% in the first year (2005/06),including patients with brain tumours, lung cancer andadvanced metastatic cancer.

OutcomesThe post has proved successful having achieved the following to date:• Head and neck sessions now have permanent funding,

allowing Emma to attend all relevant MDT meetings and clinics.

• Carrie is a core member of the hospital palliative care team and continues to work in collaboration with community Macmillan professionals.

• Hospices now have a designated SLT service.• The ‘Recovery Club’ members have transformed

themselves into a self-support group.• Community speech and language therapists are able

to access specialist speech and language therapists for support as required.

We have developed ‘on the job’ research and audit skills and learnt the importance of user involvement in servicedevelopment. We have demonstrated how dedicated SLT canbe of benefit to people living with a range of cancers and can provide a valuable contribution to holistic palliative care.

The full version of this article was published in Bulletin, theofficial magazine of the Royal College of Speech and LanguageTherapists, December 2008, Issue 680 pp20–21 (www.rcslt.org).

References[1] National Institute of Clinical Excellence: Improving Outcomes in Head and Neck Cancer, 2005.Available online: www.nice.org.uk/nicemedia/pdf/csghn_researchevidence.pdf.[2] Royal College of Speech and Language Therapists, Clinical Guidelines, London: RCSLT, 5:15, 2005.

Carrie Biddle and Emma Mitchell discuss the development of speechand language therapy services for people with cancer in Cornwall


The benefits of dedicatedspeech and language therapy

Further informationCarrie Biddle (Macmillan Specialist SLT) and EmmaMitchell (Macmillan Head and Neck Specialist SLT) Royal Cornwall Hospital Trust01872 [email protected]

15Focus on survivorship


Further informationStephen HindleCancer Survivorship Programme Lead020 7091 [email protected]

Over two million people are living with a cancer diagnosisin the UK. Some will have been recently diagnosed,others will be working through their cancer treatment, or will be coming to terms with how the cancer and itstreatment have altered their lives.

In addition to this, about 40% of people living with orbeyond cancer tell us that they feel abandoned after theyfinish their primary treatment. Their issues include the needto be able to fast-track back into treatment if they haveconcerns about recurrence or the effects of their treatment,and their desire for holistic assessments, which lead to careplans that will be delivered.

We want people to be given the information, confidenceand skills they need to self-manage their condition to theextent that they want to. We want them to have the necessaryhelp to ensure they receive all the financial support available,and crucially that they can access advice on returning towork, helping them to remain in employment if that’s whatthey choose.

Macmillan is working across the four nations to improvecare and support for cancer survivors.

EnglandIn England, this is through the National Cancer SurvivorshipInitiative, which Macmillan’s Chief Executive Ciarán Devane is co-chairing with Mike Richards, the National Cancer Director.This initiative aims to optimise the quality and length of lifefor cancer survivors following primary treatment, by improvingthe management, care and support they receive. There arecurrently seven work streams: assessment and care planning,active and advanced disease, long-term effects of treatment,children and young people, self-management, work andfinance, and research. Cross-cutting themes identified arecommissioning, information and workforce. Recent outcomesinclude a draft treatment record to be completed byconsultants at the end of each phase of primary treatment, a draft assessment framework for adults, and a review of theevidence for self-management support. Test communitiesacross both adult and child services will be used to assess the outcomes of the various workstreams, such as theassessment framework for adults, which will be rolled outafter successful testing.

ScotlandWe are working with the Scottish Cancer Taskforce, throughtheir new ‘Living with Cancer’ group. We were also funded£500,000 by the Scottish Government to increase the provisionof financial help services for people affected by cancer.

Northern IrelandWe have influenced the draft Cancer Service Frameworkwhich will be launched late 2009. We have alsocampaigned effectively on issues of cancer poverty.

WalesWe have influenced the Wales Cancer RehabilitationStandard, and draft Welsh survivorship recommendationswent to the Welsh Health Minister at the end of March.

Reaching our goalTo achieve our aim of better cancer care for survivors, we will work with partners like NHS Improvement in England todevelop new approaches to care. This will include testing outservices that are already in existence, creating innovativeapproaches to service development and undertaking researchto further develop our evidence base. We are ever mindfulthat the approaches we come up with must demonstrate bothan improvement for cancer survivors and be cost-effective.

The following series of articles will give you a feel of someof the exciting work that is happening to support cancersurvivors, including self-management, health and lifestyleinitiatives and support groups. There is much to do, and we will keep you up-to-date as we progress.

Related informationMacmillan’s cancer survivorship agenda, Two million reasons,can be ordered through be.macmillan.org.uk

Cancer Survivorship Programme Lead Stephen Hindle outlines whatMacmillan is doing to improve care and support for cancer survivors

MacmILlan’sStRaTEgy forsurvIVORship

Focus on survivorship16

Therapeutic and educational groups offer an important way to support the transition from ‘person with cancer’ to ‘person who has survived cancer’. Group interventions can reduce anxiety and depression, improving mood andaiding adjustment. They also have the dual advantage ofpeer support and cost-effectiveness, and some studiessuggest that groups using a structured psycho-educationalframework are more helpful than more open, non-directive ones.1

We have been running two kinds of groups at TorbayHospital for people who are in the post-treatment transitionof their cancer experience.

‘Moving On’ groupThe ‘Moving On’ group is led by Christine Ward and a breastcare nurse, with visits from a physiotherapist and dietitian. Itis for women who have recently finished treatment for breastcancer and incorporates ideas from cognitive behaviouraltherapy, positive psychology2 and community psychology.3

The group meets every week for six weeks and sessions include:• post-treatment transition• managing uncertainty• breast awareness• coping with problems of sleep and fatigue• nutrition and healthy eating• getting back into activity• communication with healthcare professionals,

family and friends• lymphoedema risk-reduction and positive outcomes

after cancer.

There are three follow-up sessions at three months, sixmonths and one year to refresh everyone on the sessiontopics and for evaluation purposes.

We have run 14 groups since January 2006 and the first five (in year one) were formally evaluated. Groupmembers showed improvements in their levels of well-beingand reduced psychological distress, and evaluation foundthat the groups are highly valued by patients.

‘Stress Reduction through Mindful Awareness’ groupMindfulness-based approaches to stress management havebeen offered in various medical and mental health settings.They have been shown to help reduce the distressexperienced by people with cancer.4 Mindfulness is anapproach to handling emotional stress and physical pain,which focuses on bringing awareness and acceptance topresent-moment experience. This skill is learned throughvarious meditation exercises (along with elements ofcognitive therapy) practised at home and during the weeklygroup meetings.

This group is offered to people who have had treatmentfor any type of cancer. It is led by Jenny Wilks, who has

undertaken training in clinical applications of mindfulnessmeditation.

Since April 2005, we have run eight courses, attended by52 people. More recently the course was offered to a groupof people in a palliative care setting. In response to feedback a monthly follow-up session was started in 2007 for peoplewho had completed the course.

Evaluation of the groups showed improvements in well-being and reduced psychological distress. All participantsrated the group meetings as having been useful, and mostsaid the practice of mindfulness had been helpful in theireveryday lives.

SummaryBoth group interventions have been well-received and continueto be evaluated and developed in response to feedback.

More critical comments from participants were mainlyabout practical issues such as room size and noise. However,some people found being in a group difficult because ofother people’s distress, or meeting people with moreadvanced disease. Groups are therefore not for everyone,and ideally, as at Torbay Hospital, are offered as part of a service where individual therapeutic support is alsoavailable to those who need it.

References[1] Moorey S and Greer S, Cognitive Behaviour Therapy for People with Cancer, OxfordUniversity Press (Ch 13), 2002.[2] Carr A, Positive Psychology – the Science of Happiness and Human Strengths, Brunner-Routledge, 2004.[3] Orford J, Community Psychology Theory and Practice, John Wiley and sons Ltd, 1992.[4] Speca M, Carlson LE, et al, A randomized, wait-list controlled clinical trial: the effect of amindfulness meditation-based stress reduction program on mood and symptoms of stress incancer outpatients, Psychosomatic Medicine, 62 613-622, 2000.

Further informationChristine Ward and Jenny WilksMacmillan Clinical PsychologistsTorbay Hospital, South Devon Healthcare Trust, Devon01803 [email protected] or [email protected]


Group approach offers survivorsa valuable form of support

The ‘Moving On’ group

17

as the principal source of opinionacross the network on issues relating to rehabilitation in all eight domains of care (physical, practical, spiritual,nutritional, financial, psychological,social and informational).

Topic two – CancerRehabilitation Team The standard is quite clear about theneed for rehabilitation to be deliveredby a competent and capable workforce.It covers details such as the four-levelmodel described in the NICE guidanceon supportive and palliative care,3

as well as the requirement to developservice models for cancer rehabilitation.

Topic three – referral,assessment and treatment This covers the need for referral,screening, assessment and treatmentprocesses to be uniform across acancer network, thus ensuring equityand quality for all service users. It alsorefers to waiting times for assessmentand interventions.

It has to be stressed that these arenon-pharmacological interventionswhich complement medical treatments.As such, they refer to the work of alliedhealth and nursing professionals, as well as other professions such aspsychology and social work. They aredesigned to be used alongside otherstandards, recommendations andguidelines that involve patient care,such as health and safety guidelinesand those set by NICE, professionalbodies and the NHS.

Incorporating rehabilitation into theWelsh cancer standards2 showsgrowing recognition of theimportance of survivorship.

Tumour site and palliative carestandards

2are already used in Wales

to define core aspects of the servicesthat should be provided for people withcancer across the nation. Rehabilitationstandards, which will complementexisting standards, are currently beingdeveloped. They aim to continue theprocess of regular review andmodification, ensuring continuedrelevance and significance to the NHS in Wales.

The inclusion of rehabilitation in theset of standards also reflects the growingimportance of non-pharmacologicalcare. Providing holistic care can ensurethe best quality of life for peopleaffected by cancer.

In contrast to the existing standards,there are just three objectives inrehabilitation, each described as topics.

Topic one – Cancer NetworkRehabilitation Advisory Group(CNRAG)This group will develop, coordinateand deliver all aspects of cancerrehabilitation. This will includeformalising any existing services, a process for assessing need, and the delivery of rehabilitation by anappropriate person. The group will have a specified professionalmembership drawn from the NHS and the third sector, as well as patientrepresentation. It will be recognised

What will be achieved through the standards?These strategic standards will bringtogether the people who can advise onrehabilitation. They will conceptualisethe development of the rehabilitationworkforce to deliver care, and encouragethe need to have uniform screeningreferral and assessment processes.

The development of protocols and pathways will arise from thesestandards at a local level, but will be based upon a quality agendaacross Wales. The consultation processwill begin when permission is given by the Welsh Health Minister, and willbe followed by a review to make anynecessary revisions. The rehabilitationstandards will then be launched acrossWales.

References[1] Mullan, Seasons of survival: reflections of a physician withcancer, New England Journal of Medicine, 313:270-273, 1985.[2] Welsh Assembly Government, National Standards forCancer Services, 2005.[3] NICE, Improving supportive and palliative care for adultswith cancer, March 2004.

Focus on survivorship


Further informationSue Acreman MSc RD FBDAConsultant AHP PractitionerCancer RehabilitationSouth East Wales Cancer Network07837 [email protected]

‘If cancer treatment saves people from drowning, rehabilitation andsupportive care makes sure they are not left on the beach to coughand splutter on their own.’1

Developing cancer rehabilitationstandards in Wales



The psychosocial changesLymphoedema is a chronic andincurable condition which can have a significant impact on people withcancer.1 Some people with lymphoedemahave demonstrated high levels ofeveryday social dysfunction, and havefound it more difficult to come to termswith their cancer diagnosis than thosewithout the condition.2

Although it might be assumed thatlymphoedema is a small price to payfor reaching the survivorship phase,many patients find the swelling andsubsequent comments from others cannegatively affect their confidence.3

Lymphoedema is a visible reminder of their cancer and can make it difficultto forget. People who have had breastcancer in particular, often have a highlevel of need in relation to their identityand how others see them.4

The physical changesLymphoedema can cause physicalproblems for people. Swelling in thearm can make it feel heavy and veryuncomfortable and people canexperience difficulty finding suitableclothing to fit the swollen arm. Patients

are advised to avoid heavy lifting andto do regular, gentle exercise. Manypatients need to wear a compressionsleeve, which can draw attention to theswollen limb, and there can be issueswith hygiene and keeping the sleevedry. Patients may have difficulty with the practicalities of managing theirlymphoedema when returning to normalactivities after cancer treatments.

How we can helpIt has been found that nurse-ledaftercare cancer clinics are valuable topatients.5 Specialist nurses have adaptedto meet the needs of people with chronicillness,6 and it is rewarding for thenurses to see the endorsement of theirpractice in the Cancer Reform Strategy.7

Patients will often discuss how theyare feeling with nurses. They mayexpress difficulty in accepting cancer,adapting to role change in the family,or coping with the many issuesassociated with returning to a normalroutine when surviving cancer. Nursesare in a strong position to network withother local teams and facilitate referralsto help patients through this stage. For example, ‘Look Good…Feel Better’groups boost women’s confidence at a time when they may be feelingdispirited (go to www.lookgoodfeelbetter.co.uk). At the moment thesegroups are only offered to peopleduring their cancer treatment, but

cancer survivors could also benefitfrom these sessions.

ConclusionSurviving cancer brings its own set ofneeds. Many people affected by cancerhave difficulty adapting to the changessurvivorship brings. It is hoped sentinelnode biopsy, which potentially reducesthe number of axillary lymph nodesremoved during surgery, will reduce the incidence of breast cancer-relatedlymphoedema. However, ongoingsupport for existing patients withlymphoedema is needed. The patient’sown feelings about their supportrequirements should be kept sharply in focus.

Related informationOur booklet, Understandinglymphoedema, can be ordered on be.macmillan.org.uk

References[1] Mirolo M R, Bunce I, Chapman M, Olsen T, Elisdis P,Hennessey J, Ward l & Jones L, Psychosocial benefits of postmastectomy lymphoedema therapy, Cancer Nursing, Vol 18 No3 197-202, 1995.[2] MacLaren J, Chapter 25 in Kearney N & Richardson A,Nursing Patients with Cancer Principles and Practice, ChurchillLivingstone, Edinburgh, 2006.[3] Woods M, Patients’ perceptions of breast cancer relatedlymphoedema, European Journal of Cancer Care, Vol 2 125-128, 1993.[4] McIllmurray M B, Thomas C, Francis B, Morris S, Soothill K& Al-Hamad A, European Journal of Cancer Care Vol 10 261-269, 2001.[5] Cox K & Wilson E, Follow-up for people with cancer:Nurse-led service and telephone interventions, Journal ofAdvanced Nursing, Vol 43 No 1 P 51-61, 2003.[6] Hatchett R, Nurse-led clinics Practice Issues Routledge,London, 2003.[7] Cancer Reform Strategy, Department of Health, 2007.

Lymphoedema and its effects on survivorshipAs more patients survive cancer, the issues during their experienceof cancer change. Clinical Nurse Specialist Alison Authers recentlyexamined how lymphoedema can affect breast cancer survivors

‘You may not have thoughtabout breast cancer forabout two days and thensomeone asks “what’swrong with your arm?”and it all comes back.’

‘Surviving cancer brings itsown set of needs.’

Further informationAlison AuthersMacmillan Lymphoedema CNSRoyal Devon and Exeter Hospital,Heavitree01392 [email protected]

Focus on survivorship 19


Helping survivors take greater control of their lives

New PerspectivesOne way in which Macmillan is helping people to developtheir self-management skills is through New Perspectives – a course for people living with cancer. This course (formerlyknown as Living with Cancer) was recently revised and isnow the first specific adaptation of the universally establishedChronic Disease Self-Management Programme developed at the Stanford University Patient Education Research Centre. It comprises six sessions, held once a week, focusing ondifferent topics such as handling changes to your body, makingdecisions and living with uncertainty. However, its mainpurposes are to encourage problem-solving using theexperiences of the group and to support setting goals for the future.

What makes this course unique is that the trainers havehad cancer themselves and are able to relate directly with theparticipants. This helps to create an atmosphere of sharedexperience and acceptance for people who often reportfeeling isolated by their diagnosis. What participants feelthey accomplish can vary greatly (feedback has included‘returning to work’, ‘a more healthy eating plan’ and ‘doinga handstand’). But what is commonly reported is a sensethat the course has helped participants come to terms withtheir diagnosis and gain knowledge and skills that help themto cope. Or as one participant succinctly put it: ‘It has mademe realise you can still have a life with cancer.’

For more information about New Perspectives, please contact Heather Petty or Sam Poh Voon Hew on 020 7091 2010 or email [email protected]

Macmillan estimates that there are two million peopleliving with a cancer diagnosis. Given the growingimprovements in diagnostic techniques and treatmentoptions, this number is expected to rise. This developmentis not without consequence. Greater numbers of peoplesurviving cancer has also meant greater numbers ofpeople living with long-term challenges resulting from thedisease process and/or its treatments. Because of this,issues relating to quality of life have been brought to theforefront of modern cancer care. Developing skills andconfidence in people living with cancer to deal with these issues, and so take greater control of their lives, is the cornerstone of self-management.

What does self-management involve?So what is self-management? It can be most easily describedas what people do for themselves. Examples of this include:• managing the effects of cancer and its treatments (eg

tiredness, weight gain, stress, anxiety, fear of recurrence)• making healthy lifestyle choices (eg taking exercise or

having a healthy diet)• adjusting to changes in relationships at home,

work or with friends• learning to monitor themselves and any new changes• taking prescribed medication and noting its effects.

Achieving self-management can be hard without support,particularly if the cancer journey has left the personphysically weakened and emotionally vulnerable. Servicesneed to adapt to this growing need and develop informationand resources that not only support the person, but alsoempower them to make the choices that will help them leadan active and fulfilling life. Creating such models of supportfor self-management is a key strand of work for the NationalCancer Survivorship Initiative.

‘This helps to create an atmosphere of shared experience and acceptance for people who often report feelingisolated by their diagnosis.’

Further informationSuma SurendranathSelf Management LearningProgrammes Development ManagerUK Office, 89 Albert EmbankmentLondon, SE1 7UQ020 7840 [email protected]



Developing a programme to help people cope following a cancer diagnosis

Two pilot sites work to improve the health and lifestyle of survivors

A health and lifestyle coaching programme developed for people with cancer by the North of England CancerNetwork will be trialled as a National Cancer SurvivorshipInitiative pilot site.

Facilitating recoveryThe North of England Cancer Network is developing a new intervention to facilitate people’s recovery andadaptation following cancer treatment. The ‘Health andLifestyle Coaching Programme’ is a project based in South of Tyne and Wear. It will focus on the ways in which peoplecope following a cancer diagnosis and will develop andevaluate a programme to support self-management duringcancer survivorship.

The programme is not intended to replace existing cancer programmes, but will become part of a repertoire of programmes available to meet patients’ supportive careneeds. It will not replace standard cancer follow-up but will be an additional resource at this time.

Project lead Dr Karen Roberts and Professor CharlotteClarke have carried out a number of research studies into the needs of people affected by cancer following treatment. It is exciting as we are moving from exploratory work toactual development work.

Work in progressWork is currently underway with Dr Sanjay Rao, ConsultantPsychiatrist and Director of LOGOS. LOGOS is a mentalhealth centre based at County Hospital in Durham CityCentre, which is developing an innovative psycho-oncologyintervention. The programme will consist of two ‘Health andLifestyle Coaching Programmes’, based on a cognitivebehaviour therapy model. They will be delivered for two hours each week for 8–10 weeks. A group of men andwomen who have completed radical cancer treatment forbreast, gynaecological or prostate cancer within the last threeto six months, will be invited to participate by their key worker(clinical nurse specialist or oncologist).

Upcoming work and evaluationRecruitment will start in the summer and the first programmewill begin in September. The first programme will beevaluated upon completion and its structure, content andoutcome will inform the development of the secondprogramme. The ‘Health and Lifestyle CoachingProgramme’ will take place at community centres to supportthe programme philosophy of patients returning to a lifebefore they became a ‘cancer patient’. The evaluation of the project will include:• a baseline assessment against current service provision• a robust cost-benefit analysis of the tested approach to care• a qualitative research method that elicits the views of

participants and feeds back intothe programme design.

This programme aims to helppeople following cancer treatment.It is hoped that it will facilitateadaptation and prevent mentalhealth problems in the future.

Further informationSarah RushbrookeCancer Nursing ModernisationManager/Project Lead – Survivorship ProjectNorth of England Cancer Network0191 497 [email protected]


21Focus on survivorship

e health and lifestyle of survivors

Further informationNoeline YoungService Development ManagerRoyal Bournemouth andChristchurch Hospitals NHS FT01202 704 253 [email protected]

Dragon boat team ‘Pink Champagne’ in action

Cancer survivorship programme pilot aims to improve lifestyle for cancer survivors

The Royal Bournemouth and Christchurch Hospitals (RBCH)NHS Foundation Trust has been accepted as a pilot site for a national survivorship programme. The aim of the pilot is to enable patients to pursue as normal a life as possible,through a rehabilitation programme to improve well-being and promote self care.1

RBCH, which is part of the Dorset Cancer Network, will beworking on the pilot with Bournemouth and Poole TeachingPrimary Care Trust, and other partner organisations involved inhealth and social care. These include Dorset Cancer Network,Bournemouth University, Lewis Manning Hospice lymphoedemaservices and Macmillan. The Littledown Centre and VillageHealth and Fitness provide all the facilities and trainers for theexercise programme. It is this collaboration that makes theproject unique.

Improving the survivorship experienceCancer survivors may limit their occupational and leisurepursuits due to a fear of physical activity and the possibility of exacerbating lymphoedema or other complications oftreatment. However, lifestyle is known to influence survival in breast and bowel cancer, and exercise, weight control and psychological health are therefore hugely important forsurvivorship. The pilot will move the focus from acute care andtreatment of patients, to improving the survivorship experienceand integrating people with cancer back into community life.

AssessmentWe will assess patients at diagnosis, carry out risk stratificationand determine an individualised holistic care plan whichincludes diet management and exercise. The programme willencompass family and carers to ensure the sustainability ofchange in lifestyle. A pre-habilitation programme, whichincludes shoulder exercises, aims to improve function aftersurgery. A parallel study will examine body mass index (BMI)and fat metabolism in people with cancer.

The project will link with the local sports centres that are already running health referral programmes such asHealthlink 3x30. It also includes a dragon boat team forbreast cancer patients called ‘Pink Champagne’, supportgroups and a buddy scheme. The integration of quantitativeand qualitative evaluation tools (such as objective andsubjective audit cycles, re-assessment, quality-of-life tools,

patient questionnaires, focus groups, and patient experiencediaries) will be the linchpin in tying the activity of the workgroups together, as many of these will influence all involvedprojects. We will also evaluate the impact on family, carers and participants.

Data collectionKey to the facilitation will be the development of patient-heldrecords, diaries and care plans. A comprehensive database will be required. This will include national cancer data,psychological, lifestyle, energy and metabolic profiles, andphysical parameters such as weight, BMI and exercisetolerances. These records will help coordinate care planningand communication across all care providers.

Moving forwardWe aim to make referral to an exercise and lifestyleprogramme a cost-effective aspect of cancer care and rehabilitation. We anticipate that this will reducerequirements for further support services such asphysiotherapy, lymphoedema services, stoma care andspecialist psychological support, and have a positive effecton the health and well-being of people with cancer.

Reference[1] Cancer Reform Strategy, Department of Health, December 2007.

22 Focus on survivorship

Macmillan Money Matters has received1,346 referrals from across ForthValley and has generated nearly £5million in income and benefitssince it was launched in March 2007.

Celebrating the achievements of theMacmillan Money Matters Project lastJune, gave me an opportunity to reflecton setting up the service. A number of events had come together at the timethis service was set up. I had seen myfriend receive an excellent welfarebenefit service following a diagnosis of lung cancer in West Lothian, Scotland.This service was not available in Stirling.Macmillan published a report highlightingthat 64% of people in Scotland with a terminal cancer diagnosis were notreceiving their appropriate benefitentitlement. Macmillan also contactedStirling Council offering to meet todiscuss funding to set up a service in

the Forth Valley area. I had been reallyfrustrated about not having this type of service locally and hoped this wouldfill the gap.

Meetings between the three localauthorities were held and Stirling Counciltook the lead in the partnership. Anoperational group with representatives from the three authorities, Macmillanand the newly-appointed projectcoordinator, worked closely together.

The project coordinator began therounds of health professionals across theForth Valley area. Soon everyone knewthat there was a new service in town.Referral protocols were set up to be as

simple as possible (by telephone, email,letter, from professionals, colleagues orself-referral). IT solutions were developedso that project workers could pick upreferrals and access systems from any of the local authority offices. Althoughat times this was challenging, it helpedto build relationships.

The Department for Work and Pensionsjoined the project and we were assigned‘alternative office’ status so that benefitswould be paid at an earlier date.

A project worker was located ineach authority and had access to, andsupport from, the welfare benefits teamin their respective area. The projectworker also had access to therepresentatives on the operationalgroup to sort out any difficulties thatarose in that authority. The operationalgroup met on a regular basis toupdate and determine the course of the project. Links between theoperational group have gone fromstrength to strength.

Cancer clinicians soon recognised the value and integrity of the service. Patients updated them at appointmentswith information on how much theirincome had increased and how helpfulthe project worker was. Project workersrecognised that clinicians had a lot tooffer, providing information on cancertypes, whether special rules applied tothem and providing supportive evidencefor claims. Clinicians began referringto the project workers as ‘their team‘, so to patients it was all a ’team effort‘.Everyone worked together to providethe best service to meet the needs ofthe individual.

As Aristotle said: ’the whole is morethan the sum of its parts‘. I believe somuch has been achieved as a result of partnership working in practice.

Money Matters in ScotlandA successful welfare benefits scheme in Scotland shows howworking in partnership can achieve great things

Further informationBrenda MitchellAdvice Team Leader – Care & Health, Stirling Council Community Services, Viewforth Pitt Terrace, Stirling, FK8 2ET01786 [email protected]

Celebrating its success and looking to the future at the Macmillan Money Matters conference


‘Cancer clinicians soonrecognised the value andintegrity of the service.’

‘Everyone worked togetherto provide the best serviceto meet the needs of theindividual.’

getTiNG InvolVEd

Diary of 2009 eventsJune21–28 JuneUK Myeloma Awareness Weekwww.myeloma.org.uk

July6–12 July Health Information Week (West Midlands)www.equip.nhs.uk/custom/healthinfo

6–12 JulyEthnic Minority Cancer Awareness Weekwww.emcaw.co.uk

September14 September Urology Weekwww.urologyweek.org

15 September World Lymphoma Awareness Day www.lymphomacoalition.org

OctoberBreast Cancer Awareness Monthwww.breastcancercare.org.uk

25 September 2009 World’s Biggest Coffee MorningHelp create a huge stir by having acoffee and a slice of cake with yourfriends and colleagues.0845 602 [email protected]/coffee

October4 October 2009Baxters Loch Ness MarathonOne of the UK’s leading marathons.Run through stunning Highlandscenery, and you may even be luckyenough to catch a glimpse of Nessie!020 7840 [email protected]/lochnessmarathon

November1 November 2009ING New York City MarathonWith more than two million spectatorslining the streets from Staten Island toCentral Park, the New York Marathonis an incredible event.020 7840 [email protected]/newyorkmarathon

5–6 November 2009Macmillan professionals event Renaissance Hotel, Heathrow The theme of this year’s event will beinnovation and improvement. Moreinformation will be available on theLearn Zone from July.

23Events


Macmillan eventsJuneVarious dates 2009Walk with usRaise money for people living with cancer and stay fit at the same time by walking with Macmillan.www.macmillan.org.uk/walking

JulyJuly–August 2009 Longest Day Golf Challenge The toughest challenge in golf is back.Have you got what it takes to play 72holes, hit 300 shots and walk 20 miles – all in one day?020 7840 4614www.macmillan.org.uk/golf

September17–21 September 2009 Alps Cycling ChallengeTackle tough mountain climbs madefamous by the Tour de France on thisbrand new Macmillan challenge.020 7840 [email protected]/alps

20 September 2009 BUPA Great North Run The world’s biggest half marathon – if you already have a place in the eventlet us know and join Team Macmillan fora great day in the North East.020 7840 [email protected]/greatnorthrun

Allogeneic (donor) stem celltransplantsMAC11690This guide is about allogeneic (donor)stem cell transplants as treatment forcertain types of cancer. It aims to helpthe patient understand and feel moreconfident about their treatment. It willhelp them prepare both themselvesand their donor, and answers some of their questions about treatment. The guide also looks at stem celltransplants in children.

Help with the cost of cancerMAC4026.09An easy to use guide to benefits andfinancial help for people affected bycancer. Benefits rates apply from April2009 to April 2010. Welsh PDFavailable from be.macmillan.org.uk

Northern Ireland versionMAC4026.09.NI

Cancer of unknown primary(CUP)MAC11689Written in collaboration with Cancer ofUnknown Primary Foundation (CUP) –Jo’s Friends, this new booklet addressesthe questions many people have aboutthe diagnosis and treatment of CUP,including the possible reasons why theprimary cancer can’t be found. It looksat symptoms, tests and surgery, andexplores the feelings patients mayexperience following a cancer diagnosisand treatment.

Macmillan resources24


we sharE ReSourcEsYou can view and order from our whole range of information resources at be.macmillan.org.uk Simply visit the website, register your details andselect what you need, or call 0800 500 800 to place an order. All resourcesare available free of charge.

High-dose treatment with stem cell supportMAC11691This booklet explains why thisprocedure is used to help treat cancer,and takes you through the four mainsteps of the process. It contains adviceabout preparing for treatment andinformation about how the stem cellsare collected. The booklet also covershow the stem cells are given back andthe side effects likely to be experienced.

New resources

Updated resource

Listen up – cancer informationnow on audio CDWe are passionate about making thecancer information that we provideaccessible and of the highest quality.So, over the next few years, we willproduce CD versions of lots of the new booklet titles we inherited throughour merger with Cancerbackup. TheseCDs are specifically aimed at peoplewith visual or physical impairment and people whose first language isn't English.

Out-of-hours toolkitMAC11367_JAN09 V1We are reliant on out-of-hours care formore than 70 per cent of our lives. Ournew Out-of-Hours toolkit is designed tohelp healthcare professionals providethe highest standard of out-of-hourscare by sharing good practice andboosting the quality of care during thispotentially problematic period for bothcancer and palliative care patients. The toolkit can be downloaded fromlearnzone.macmillan.org.uk

issue 49 summer 2009 voicemacmillan - be.macmillan · pdf filefor macmillan professionals...

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