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Macmillanvoicefor Macmillan professionalsIssue 51 winter 2009In this issueCarolyn FowlerMount Vernon Cancer NetworkEducation Lead and LecturerPractitioner in Palliative CareFocus on informationInnovative ways to provide informationfor people affected by cancerSharing good practiceGaining accreditation asa Practice Development Unit

ContentsNews3 The latest news from across Macmillan, including our number oneranking on the new Charity Brand Index, the launch of our new Workingthrough cancer tool kit, and the World’s Biggest Coffee MorningFeatures9 A force for changeWe campaign for change – our campaigns team reports back on asuccessful year10 ProfileCarolyn Fowler, Mount Vernon Cancer Network Education Leadand Lecturer Practitioner in Palliative Care11 The reality – my experience of scalp coolingYvonne McKenna, Macmillan Lead Cancer Nurse, tells us about herexperience of using a cold cap during her chemotherapy12 Improving cancer care through targeted researchMacmillan sponsors research to help inform cancer carePull out: Sharing good practiceAchieving Practice Development Unit accreditation13 Meeting the needs of male carersGolf days and comedy nights prove to be successful ways ofgetting male carers together14 Helping women cope following breast cancer treatmentDevelopment of an end-of-treatment workshop15 Enhanced breast reconstruction service adds thefinishing touchCath Fitzsimmons describes how she and her colleagues developeda full breast reconstruction service to meet patient need16 Macmillan’s fundraising programmeFrom grass roots to nationwide campaignsFocus on information17 Ensuring equity of access to information for people withhearing impairmentMeeting the information needs of the all members of the community18 Bringing cancer information into community librariesLibraries offer many advantages to providing cancer information19 Establishing an information service in an area of high needMacmillan Information Service Manager Janice Watt talks about her workto support people affected by cancer in East Glasgow20 Marketplace unites variety of cancer support servicesManchester’s first ever ‘cancer support marketplace’ is well-received21 New online ‘roadmaps’ help identify local informationand support servicesGiving people affected by cancer the right information at the right time22 Cancer information ‘pods’ becoming popular with menInformation pods provide a neutral, friendly environment for men wantingto know more about cancerGetting involved23 Key challenges and events for your diaryMacmillan resources24 New and updated Macmillan resources available nowMacmillan Voice winter 2009We welcome feedback!Let us know your views on Macmillan Voice.Email macvoice@macmillan.org.ukWriters 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 aboutthe issues that matter to you and shareyour knowledge with other Macmillanprofessionals. You don’t need to be anexperienced writer to get involved inMacmillan Voice. We can help you turnyour idea into a news item or feature.All you have to do is get in touch withour Managing Editor Rosie Cotter atrcotter@macmillan.org.uk orcall her on 020 7091 2219.Maximum word counts: news storiesup to 300 words; features up to500 words. Please also send usphotographs if possible, using thehighest resolution on your camera.Note: we hope that you will share newsand learning, but we are not able to promotebooks that you may have had publishedoutside of the NHS.Contributors this issueCaroline Boyer | Amanda BringansGinny Cranshaw | Michelle DerbyshirePatty Doran | Peter FairbrotherCath Fitzsimmons | Carolyn FowlerJanice Koistinen | Yvonne McKennaCaroline Misell | Scott MurraySara Padhair-Tutton | Janice WattPam WedleyEditorial TeamRosie Cotter, Genevieve Osei-Kuffuor, Sajjad ShahEditorial BoardCharlotte Argyle, Carers Support ManagerKathy Blythe, Macmillan Development Manager, EMNEColin Cosgrove, Information Development ManagerHelen Foy, UK Postholder Support and Development Manager, EMNEAlison Hill, Nurse Director, South West London Cancer NetworkBeverly Hurst, Macmillan Gynaecology/Oncology CNSKarin Jacobi, Senior Marketing OfficerYvonne McKenna, Macmillan Lead Cancer NurseEsther Murray, Acting Consultant in Psychosocial OncologyHeather Nicklin, Macmillan Specialist Palliative Care Social WorkerTerry Priestman, Consultant Clinical OncologistChris Sansom, Macmillan Development Manager, LASERLouise Wem, Macmillan Specialist RadiographerTracy Williams, Senior Information Development NurseDesigned by Grade Design Consultants, Londonwww.gradedesign.comThis paper is 100% recycled.© 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_11_09

News 3MAcmIlLan’s aNnuAlCoFfEe MORNinGOnce again, the UK went crazy for coffee and home-bakedcakes at this year’s World’s Biggest Coffee Morning onFriday 25 September.A number of fun and creative events took place, includingthe christening of a donkey in Macmillan's honour, amorning tea with actor James Sutton, and a 'shirt swap' withformer professional football player Ian Wright.We also ran a successful online knitting project with helpfrom The Knitter magazine, Rowan, a designer handknitscompany, and John Lewis. Supporters could downloadknitting patterns from our website and were encouragedto get together with friends to knit their squares intoa blanket.We hope to raise over £8 million through coffee morningsthis year.James Sutton and the Macmillan team at St James's Institute of OncologyNew Working through cancer tool kit pilotedWorking through cancer is Macmillan’s campaign tochampion support and fair treatment for people affectedby cancer in the workplace, and to better understandwhat their needs are.There are now two million people living with or beyondcancer in the UK, and that number is rising each year.Of these, 774,000 are of working age.‘Research commissioned by Macmillan hasshown that a good relationship with theemployer and a phased return-to-workare two important predictors of asuccessful adjustment back to work.’As part of our campaign, we have developed the Workingthrough cancer tool kit. This is an exciting initiative which weare piloting over a nine month period across some of ourcorporate partners – Ford, Nationwide and npower.Many people want to return to work or stay in workfollowing their cancer diagnosis or cancer treatment. Theyneed to work to earn a living, and want to work because todo so is ‘normal’. Research commissioned by Macmillan hasshown that a good relationship with the employer and aphased return-to-work are two important predictors of asuccessful adjustment back to work.Our aim is to ensure that people affected by cancer aresupported in the workplace and that line managers and HRteams have the right information and guidance to do that.Our research studies with patients, line managers andoccupational health teams have led us to develop a tool kit ofresources to address the needs of people living with cancer,and the needs of their managers and employers.The new tool kit includes:• Working through cancer: a guide for employers –useful guidance for line managers and HR teams (pdf format)• Work and cancer – a booklet for employees affected bycancer (also available in audio)• Working while caring for someone with cancer– a booklet for carers• A cancer in the workplace DVD• Working through cancer template policyThese resources can be downloaded frommacmillan.org.uk/work or ordered throughbe.macmillan.org.ukThroughout the pilot period we will be evaluatingthe resources and how they’re used, to helpus understand what information and supportis needed. Those who have read or seen anyof the resources are encouraged to feedback through an online survey atmacmillan.org.uk/work or by taking partin confidential telephone interviews.Further informationCatriona MunnAccount ManagerMacmillan Cancer Supportcmunn@macmillan.org.uk

4NewsThe latest in Macmillan’sinformation rangeMacmillan’s new andimproved website goes liveIf you’ve logged on to macmillan.org.ukrecently, you will have noticed ourwebsite has been given a significantrevamp. It now contains far moreinformation for people affectedby cancer.The website brings together the bestelements from Macmillan andCancerbackup's old websites. Some ofthe highlights include:• over 2,000 pages of high-qualityinformation on cancer types,treatments and what to expect• clearer information on how peoplecan receive support from Macmillanhealth and social care professionals• an online community wherethousands of people can shareinformation and support throughblogs, forums and chatrooms.We hope that you like the look of ournew website and are finding it easierto use. You can let us know what youthink by contactingwebmanager@macmillan.org.ukCDs and tapes for peopleaffected by cancerOur audio materials, based on ourrange of high-quality booklets, includeinformation about cancer types anddifferent treatments. They also giveinvaluable advice about living withcancer. Titles include: Understandingchemotherapy, Coping with fatigueand Sexuality and cancer.Macmillan expands its rangeof Welsh resourcesMacmillan now has three patientinformation booklets available inWelsh, and more are on the way.Over the past few months, theInformation and Support team havetranslated three of our most popularsite-specific booklets into Welsh –Understanding breast cancer (Cansery fron), Understanding chemotherapy(Deall cemotherapi) and Understandingradiotherapy (Deall radiotherapi).We are also translating our bookletson localised prostate cancer andcancer of the colon (formerly cancerof the large bowel).This will add to our existing rangeof resources available in Welsh.‘We’re here for you’ minibooklet with pocket cardDeveloped in consultation withMacmillan professionals, this minibooklet will help people affected bycancer find out about the supportavailable from Macmillan's new phoneservice and website. The new bookletcontains information from our Affectedby cancer? leaflet in an easy-to-read,pocket-sized format.New branding of patientinformation bookletsYou may have noticed that some ofour patient information booklets looka little different. Following our mergerin 2008, we’ve redesigned all ex-Cancerbackup booklets to be in linewith Macmillan’s branding.There are four series of bookletsin the range:• Living with and after cancer• Cancer types• Tests and treatments• End of lifeEach series has a different colouredbar at the top of the booklet. Thebooklets still have Cancerbackup’slogo on them, as professionals haveidentified it as a mark of quality.New information about thelate effects of cancer treatmentWe talked to cancer survivors and askedwhat information they would find useful.From this, we are developing two newbooklets about the late effects of cancertreatment. Late effects of treatment forbowel cancer looks at issues includingcoping with body image changes, livingwith a stoma, and faecal incontinence.Late effects of breast cancer treatmentincludes information about treatments,fertility, lymphoedema, sexuality andpsychological issues. We also have twobooklets about the late effects of pelvicradiotherapy: Pelvic radiotherapy in men– possible late effects and Pelvicradiotherapy in women – possiblelate effects.Our ‘Life after cancer’treatment bookletsWe have produced four new bookletsabout life after cancer treatment. Thebooklets include: Exercise after cancertreatment, Giving up smoking aftercancer treatment, Eating well aftercancer treatment, and Your feelingsafter cancer treatment.2010 Cancer Factfilecoming soonThe new edition of the factfile launcheson 1 January 2010. This CD-Romcontains over 300 fact sheets coveringa wide range of cancer topics, includingall the commonly used treatments; howthey work and the benefits and sideeffects of each. There are also factsheets on site-specific cancers andaspects of living with cancer. It alsoincludes four factsheets that have beentranslated into foreign languages.Go to be.macmillan.org.uk or call0800 500 800 to order any of ourinformation resources today.We welcome your feedback. If youhave any comments about any of ourinformation resources, please emailmacvoice@macmillan.org.ukMacmillan Voice winter 2009

6 NewsMacmillan recognised as leadingprovider of cancer informationMacmillan was recently certified as a producer of qualityhealth and social care information through a new standarddeveloped by the Department of Health.The Information Standard was launched by theDepartment in November this year. The standard, whichused to be called the Information Accreditation Scheme,assesses the processes organisations go through to produceinformation. It will show people whether the informationthey are reading is reliable and of a high quality.Macmillan was one of 40 pilot sites for the standard.We were recently assessed and passed with flying colours.The auditor was extremely impressed with the processeswe have in place to produce information. The scope ofmaterial covered included all former-Cancerbackupinformation and Macmillan’s pre-existing information forpeople affected by cancer.Anna Leibowitz, Information Development Manager, said:‘It is great that, through this scheme, Macmillan will berecognised as demonstrating best practice in informationdevelopment. The scheme gives the general public a clearway to identify producers of quality-assured information.Our accredited information will help people affected bycancer understand their care and make informed decisionsabout their treatment options.’For more information about the Information Standard,please contact Abi Meredith in the Information and Supportteam on 020 7091 2201.Information prescriptions: providingthe right information at the right timePeople affected by cancer should beoffered supported access to informationthroughout their cancer experience.In public policy terms, the term usedto describe this process is ‘informationprescription’. It has been the subject ofsome controversy and is used morewidely in England than in other partsof the UK. The advantage of the terminformation prescription is that it givesweight to the significance ofinformation-giving processes.In cancer care, tools are beingdeveloped to support three formsof cancer information prescription:Tailored cancer informationprescriptions are offered on the basisof a consultation between a professionaland a person affected by cancer. Shortsections of content, such as treatmentdescriptions or diagrams, are selectedto form a summary of the consultation.Generalised cancer informationprescriptions consist of documents, upto eight pages in length, for each stagein a pathway (or the key points in acancer experience). These are currentlybeing piloted. Unlike the tailored cancerinformation prescriptions, they provideinformation that is generally relevant topeople with a particular cancer, ratherthan specific to an individual’s needs.Self-prescribing takes place when aperson affected by cancer retrievesinformation directly for their own use.The three forms of cancerinformation prescription will all beincluded in a system hosted by NHSChoices for use in England. Discussionsare taking place to support thedevelopment of equivalent informationsystems in other parts of the UK, suchas through NHS Inform in Scotland.Macmillan and Cancer ResearchUK (CRUK) built a pilot informationdelivery system to enable professionalsto offer generalised cancer informationprescriptions. The National CancerAction Team is using it to pilot deliveryof the information pathways. Macmillanhas funded 10 one-year project postsas part of the piloting. The 10 projectmanagers, deployed in London and thesouth east, are working with the NHStrusts within their cancer networks.They are helping health professionalsto identify how best to use the systemwithin local information settings, takingaccount of local information centresand other resources.Macmillan and CRUK had plannedto produce an information prescriptionssystem based on learning from thesepilots, but when NHS Choicesannounced in February 2009 that theywould be developing a system togenerate information prescriptions forall long-term health conditions, thecharities decided to provide cancercontent for the NHS Choices systemrather than build a rival mechanism.The NHS Choices system is still in theearly stages of development and is dueto be launched in the spring of 2010.Anyone will be able to retrieve theinformation from the generalisedcancer pathways or for selfprescription.Professionals will be ableto set up accounts to enable them toaccess sections of text for tailoredcancer information prescriptions.Implementing cancer informationprescriptions will be challenging, asresources are not always availableand the mechanisms will change howpeople work. The result, however, shouldbe that individuals know more abouttheir cancer and their personal choices.More information about prescriptionswill be available in the near future.Ruth CarlyleInformation and Support Policy LeadMacmillan Cancer Support020 7840 4698rcarlyle@macmillan.org.ukMacmillan Voice winter 2009

News 7Producing accessible clinical informationSenior Information Development Nurses Sue Green andTracy Williams talk about their roles and how Macmillan’spatient information is producedMacmillan produces information onspecific cancers and treatments forpeople with cancer. This is producedby a team of cancer informationnurses who follow best practice ininformation development.Sue and Tracy manage Macmillan’steam of information development nurses,all of whom have additional experiencein cancer nursing care, writing skills andan interest in information.‘On an average day we might havea journal club, then meet with theeditorial team to discuss, plan andfinalise schedules,’ Sue said.‘It could also include responding toenquiries, working a shift on the phones,editing a booklet, or keeping the teaminvolved in changes,’ Tracy said. ‘All ofthe information development nurseswork on the phones and this keeps usin touch with information needs.’‘We also work on special projectssuch as the information pathways andinformation prescriptions, and wecreate material to support specificcampaigns,’ Sue said.Sue and Tracy said developinginformation which helps people tounderstand their illness, make senseof treatment options and manageeveryday life, is extremely rewarding.‘Developing informationwhich helps people tounderstand their illness,make sense of treatmentoptions and manageeveryday life, isextremely rewarding.’Creating information from concept to finishSue Green and Tracy Williams: Keeping up-to-date with the information needs of people affected by cancerGathering ideasNew ideas are generatedfrom people affected bycancer, healthcareprofessionals, knowledgegrowth, and from theclinical advisory board(made up of a mix ofdoctors, nurses and alliedhealth professionalscovering all areas ofcancer care, and all partsof the UK).Working out the bestformatThe editorial team meet todiscuss information needsand gaps, and considerthe best format for newinformation – a newbooklet, a factsheet or acancer ‘Q’ on the website.We also look at materialproduced by others toavoid duplication.Producing contentAn experienced cancerinformation nurse willresearch and write thenew content. Specialist andpatient advisers review thedraft and provide feedbackto the team. All content isthen reviewed by ourmedical editor. A seniorcancer information nursespecialist makes a final editto the text and it is thenpassed to the editorialteam for style, readabilityand layout.Keeping informationup to dateCancer types, tests andtreatments are reviewedevery year and revised everysecond year, but revisionswill be brought forward ifnew information becomesavailable in the interim.The ‘Living with cancer’booklets are reviewed every18 months and revised everythree years. All of ourhealthcare booklets includestandard information ontests, diagnosis, consent,multidisciplinary teams,and emotional effects.Macmillan Voice winter 2009

8NewsNew quality mark for cancer facilitiesto be rolled out in January 2010Macmillan is pioneering an ambitiousproject to establish a set of qualitystandards for cancer buildings. Thestandards will be represented bya kitemark known as the MacmillanQuality Environment Mark (QEM).It will help to ensure people affectedby cancer are treated and supportedin environments of a uniformly highquality.Nicola Cook, National ProjectManager at Macmillan, said: ‘TheQEM will recognise and reward goodpractice, in turn improving the qualityof care provided to people affectedby cancer. In fact, it is people who areaffected by cancer and who use theservices themselves that have helped usto set the standards that have to be metin order to achieve the quality mark.’The QEM will also support thepatient choice agenda and buildsignificantly on the HealthcareCommission’s requirement of ‘clean,comfortable and friendly environments’for cancer care.‘Facilities awarded the QEM will begiven a visible symbol to prove theirquality to patients, staff and visitors.Macmillan-approved facilities will alsobe highlighted on our website, throughappropriate publications andcampaigns, and be promoted as part ofour services to people with cancer.‘Working directly with peopleaffected by cancer on this project hasensured that their experience isembedded in cancer buildings of thefuture. We also hope that the QEM willimprove the general standard of cancerfacilities across the UK. Macmillan haspledged that any facility which does notmeet the standard of the QEM willreceive support to improve its quality sothat it can obtain the QEM in the future.’The project was piloted inNovember this year and will be rolledout UK-wide in January 2010. DNVHealthcare have been appointed byMacmillan to undertake theassessments which support the QEM.Macmillan wants someone affected bycancer to be a core member of everyassessment team which visits a site.If you know anyone who would like tovolunteer to be a member of thisassessment team then please ask themto visit opportunities.macmillan.co.ukto register their interest. If you want toreceive more information on the QEMwhen it is launched, please emailMQEM@macmillan.org.ukAlso, look out for more information inforthcoming articles in the Macmillanprofessionals’ e-newsletter andMacmillan Voice.Macmillan Voicereadership surveyThank you to everyone whoresponded to our readership survey.We received around 180 completedquestionnaires in total. We havebeen working over the past coupleof months to collate the data andwe will report back on the results inthe next edition of Macmillan Voice.Macmillan Solutions service set to startIndependence, choice and controlare some of the most importantthings that people with cancer saythey lose following their diagnosis.One of the ways we aim to addressthis issue is through our pilotMacmillan Solutions service. Thisoffers people the opportunity tochoose the support they receive soit meets their individual needs.Over the past year, we have identifiedmany opportunities to deliver MacmillanSolutions by working with a diverse rangeof organisations, groups and individuals.Together with partner organisations,we’ll be training, advising and supportingvolunteers from the local community sothat they can provide tailored support topeople affected by cancer. There will bea variety of services, or ‘solutions’, tochoose from. For example, if a singlemother is having treatment and wantsthe same person to pick up her childrenfrom school, a volunteer could help.Or if someone with cancer is no longerwell enough to walk their dog, avolunteer could take it to the park.As part of the service, anyoneaffected by cancer will be able toapply for a small budget to spendon something that will improve theirquality of life. This could be anythingfrom a cordless phone to plants fortheir garden.The initial Macmillan Solution schemeswill begin in Manchester and EastHampshire at the end of 2009. These willbe in partnership with the Wai Yin ChineseWomen Society and the Wessex Urologygroup. Watch this space for updates onhow the pilot project is progressing.For more information on theschemes, please contact DebraWells at dwells@macmillan.org.ukor Karen Scott atkscott@macmillan.org.ukMacmillan Voice winter 2009

A force for change 9Campaigns team makesa big impact during 2009It has been an excellent year for Macmillan’s campaignsteam, and we have been recognised with a number ofindustry awards for our successful campaign to abolishprescription charges. These included the ‘Big Impact’ awardat the Third Sector Awards, two awards for ‘Best Campaign’in different categories at the Chartered Institute of PublicRelations Awards, and an award for ‘Best Voluntary SectorCampaign’ at the Public Affairs News Awards.Our phenomenal success this year would not have beenpossible without your help. Thank you all for your supportduring 2009 – you play a big part in advising, supportingand promoting our campaigns and we are very grateful.During 2009, we launched our sex, relationshipsand cancer campaign, revisited the hospital car parkingcampaign in England, and continued to push our fuelpoverty campaign.‘Over 2,500 people have viewed thetool kit and during the campaign wehad an order increase of 142% on ourinformation booklets regarding sexand cancer.’Sex, relationships and cancerAs part of the sex, relationships and cancer campaign,we created an online tool kit for health and social careprofessionals. Over 2,500 people have viewed the tool kitand during the campaign we had an order increase of142% on our information booklets regarding sex and cancer.Hospital car parkingIn August we revisited our campaign calling for freehospital car parking for people with cancer in England.This is an ongoing campaign for us and it received a lot ofmedia attention.Freeze out fuel poverty – campaign updateIn November we launched the second year of ourcampaign to freeze out fuel poverty for people withcancer and you may have seen the media coverageon the issue, which affects 20% of people undergoingactive treatment.Many people find it difficult to get hold of clearinformation on energy efficiency, tariffs and grants forinsulation. We have produced a fact sheet which bringsthis information together and includes contact details andkey questions to help people get the support and advicethey are entitled to. Macmillan health professionals arewell-placed to raise awareness of the help which isavailable for patients. The Keeping warm without theworry fact sheet is available atmacmillan.org.uk/fuelpoverty or can be ordered onbe.macmillan.org.ukIt seems that this is a subject close to many people’s hearts.It is the most talked about Macmillan item to date on ourFacebook fan page, which reaches over 12,000 people.As a result of the campaign a number of hospitals respondedto say they would better promote their concessions forpeople with cancer, which is what we wanted them to do.Upcoming campaignsWe are currently doing some research into access,availability and suitability of wigs, prostheses andlymphoedema sleeves for black and minority ethnic groups.If you have found that this is an issue for people affectedby cancer, or you have found that this is an issue in yourpractice, then please email us with your experience atcampaigns@macmillan.org.uk‘As a result of the campaign a numberof hospitals responded to say theywould better promote their concessionsfor people with cancer.’Michelle Rowley,Campaigns ManagerFor more information onMacmillan’s campaigns and howto get involved, please contact usat campaigns@macmillan.org.ukMacmillan Voice winter 2009

10ProfileCarolyn FowlerMount Vernon Cancer Network Education Leadand Lecturer Practitioner in Palliative CareWhat do your roles involve?My lecturer practitioner role involves developing initiatives for palliative careeducation for the East and North Hertfordshire area. I also lead a mentorshipprogramme for nurses in development posts and work as an AdvancedCommunications Skills trainer.As part of the education lead role, I chair a steering group at the Mount VernonCancer Network. I lead a collaborative approach to palliative care education for allprofessionals in the network. Over the last five years we have successfully broughttogether pockets of education from all over the network into one cohesive programme.This achievement is the result of the commitment and enthusiasm of many people.Tell us about being a trainer for Macmillan’s ‘Setting out’ courseThe ‘Setting out’ course is for new Macmillan professionals. Topics include changingroles, self-management and team building. This can be challenging to run as thereis usually a mix of professions, but teaching the course really keeps my feet on theground and I find it extremely useful listening to other Macmillan professionals.Can you describe a typical day?I can sometimes travel over 60 miles a day, attending strategic meetings todevelop education initiatives. This involves working with different healthcareprofessionals in areas such as end-of-life care, psychology, long-term conditions,bereavement and many more. I try and teach when I can; usually this is incommunication skills and supporting others in their teaching practice.How do you juggle the various aspects of your role?It’s very challenging. A lot of it is about trying to keep the balance and give fairtime to both roles. The work I do at the network has a positive impact on myother work because I bring knowledge from this to my other role.What are the biggest challenges?Within my education lead role, it is managing the amount of information anddemands on my time. Remembering that I’m leading and not there to carryout the initiatives can be difficult. Motivating people is also a challenge. Manyprofessionals want to work collaboratively, so we try to support those who wantto take part in network activities within their busy working lives.LocationEast and North HertfordshireIn postThree years as Lecturer Practitioner andtwo years as Education Lead‘We have achieved free,core palliative careeducation throughout thenetwork, which is fantastic.’What is your greatest success?We have achieved free, core palliative care education throughout the network,which is fantastic. This ensures quality and follows agreed aims and objectivesbased on local and national policy. Knowing everyone in the network has thesame aims and that the workforce is receiving equitable access to education isalso a great achievement.What is the best thing about being a Macmillan professional?The support that we get from the Learning and Development team at Macmillanand our Macmillan development managers is brilliant. This is over and abovewhat people in non-Macmillan specialist posts get.If you could invite any four people (past or present) to dinner,who would they be and why?Nelson Mandela and Lance Armstrong, to hear their stories of survival and howthey have used their experiences to support others. Oscar Wilde, as I love hisphilosophising and aspire to some of his ideas. And Chris Moyles, only becausehe makes me laugh when I am driving down the motorway.Further informationCarolyn FowlerMount Vernon Cancer NetworkEducation Lead and LecturerPractitioner in Palliative CareMacmillan Team East and NorthHerts NHS TrustSouth Block, QEII Hospital, WelwynGarden City, Herts AL7 4HQ01438 314333 ext 5319carolyn.fowler@nhs.netMacmillan Voice winter 2009

The reality – my experienceof scalp coolingYvonne McKenna, Macmillan Lead Cancer Nurse, says tryingto keep the hair on her head was one way of managing tostay sane throughout her cancer diagnosis and treatmentScalp cooling 11I don’t think it was purely vanity thatdrove me – although this was one ofthe reasons for my choice to use scalpcooling during chemotherapy. Havinghair gives the appearance of normalityat a very abnormal time. It takesenough energy to get yourself usedto the idea of having chemotherapy,let alone telling your family andfriends that you’ve got to have it.‘I caught sight of myself ina mirror and I looked abit like an astronaut.’I thought about wearing a wig, but itdidn’t change my mind about tryingscalp cooling, and the idea of coveringup with a hat or scarf didn’t appeal.On the first day of chemotherapy, thecold cap was applied. It was quiteheavy and was attached to the coolingmachine by a flexible tube. I caughtsight of myself in a mirror and I lookeda bit like an astronaut.The cap is worn for half an hourbefore chemotherapy is administered.Your head becomes increasingly cold,then icy.The mixture of chemotherapy surgingaround your system and having yourhead frozen isn’t one that I wouldrecommend lightly. The loud hum ofthe cooling machine and the increasingnausea caused by the toxic drugs isextremely unpleasant. In addition,I seemed to have an increased senseof smell. The smell of the leather chairI was sitting on and the plastic smellof the helmet mingled together in asweet and sickly way.‘Towards the end, theroom was spinning, thenausea was rising, myhead was thumping andthe cold made me shiverand tremble.’They gave me anti-sickness medicationand aromatherapy oils to sniff. Ithelped a bit, but after a while I startedto associate the aromatherapy withchemotherapy, and still felt very sick.As the hours ticked by, not only myhead, but my whole body started to getvery cold. I was wrapped in blanketsand had heated pads tucked aroundme to try to keep me warm. Towardsthe end, the room was spinning, thenausea was rising, my head wasthumping and the cold made meshiver and tremble. When the cap wasremoved I looked in the mirror andsaw that I had red indentations aroundmy hairline, and icicles in my hair.I was also a deathly pale, with bluelips and red eyes. I did this every fewweeks for seven months.Was it worth it? I kept most of myhair, but as the treatment progressedI became alarmed by the brushfulls ofhair that I was losing on a daily basis.By the end of the chemotherapy I hadlost roughly a third of my hair. Still, atleast I had hair and for me, that wasa good result.Would I recommend it? Myexperience was as it was. If keepinghair is important to your patient, theymay want to try scalp cooling and see.Related informationScalp cooling can affect people indifferent ways. You can find out moreabout scalp cooling under the 'cancerinformation' section of Macmillan'swebsite macmillan.org.ukScalp cooling – how it worksScalp cooling is a method of preventing the loss of hairfrom the head during some types of chemotherapy.It works by reducing the blood supply to the hair follicleswhere the hair grows. This means that less of thechemotherapy reaches the hair follicles and so the hairis less likely to fall out.There are two widely available methods for scalp cooling:• One method uses a hat known as a 'cold cap', whichis filled with a gel that can be chilled. The hat mustbe fitted snugly around the head to work properly.• The other method of scalp cooling uses a smallrefrigerated cooling system to pump a liquid coolantthrough a cap that is attached to a speciallydesignedrefrigerator.Further informationYvonne McKennaMacmillan Lead Cancer NurseCancer Services DepartmentUHSM FTWythenshawe HospitalSouthmoor RoadManchester M23 9LT0161 291 4929Yvonne.McKenna@UHSM.NHS.UKMacmillan Voice winter 2009

12Research into cancer careImproving cancer carethrough targeted researchIt is well-known that Macmillan works with health and socialcare professionals to improve cancer services. Perhaps lesswell-known is that Macmillan also sponsors research intocancer care.One group engaging in such research is the MacmillanPalliative and Cancer Care Research Collaborative (MacPaCC).MacPaCC focuses on understanding and improving cancercare, particularly in primary care. When the group began in2004, its work centred on the Gold Standards Framework (GSF)for primary palliative care. The aim of the GSF is to develop alocally-based system to improve the organisation and qualityof care for people in the last year of life. Now the grouppursues a range of interests to advance Macmillan’s strategicpriorities. Research projects, planned or underway, includework on how to:• improve support for cancer survivors in primary care• avoid crisis admissions• improve the transition from chronic illness to end-of-life care• support integrated working between primary care andsocial care teams for people with cancer.MacPaCC brings together researchers – many of whomcombine a university post with clinical practice in palliativeScott MurrayScott is a practising GP, a founding member ofMacPaCC and the St. Columba’s Hospice Chair ofPrimary Palliative Care at the University of Edinburgh.There he leads the Primary Palliative Care ResearchGroup, which seeks to understand the experiences ofpeople with life-limiting illnesses and their carers, andto develop and advocate best models of holistic care.He is a research adviser for Macmillan in Scotland andan editorial adviser to the BMJ, where he is leadingtheir ‘Making a difference campaign’ to improve carefor all people at the end of life.Scott regularly visits Africa, where he worked foreight years, to conduct training, service evaluation andresearch in palliative care. He strongly believes we canlearn from Africa about promoting discussions ondeath and dying in society, so that members of localcommunities can be more involved in helping eachother at the end of life.medicine, general practice or nursing – with service users,Macmillan research managers, a Macmillan GP adviser,and Macmillan’s Chief Medical Officer. Researcherscollaborate on projects, and all group members worktogether to exchange and test ideas.This is the first in a series of articles about the group.Here we profile a study led by Professor Scott Murray.Proactive, early follow-up in primary careScott and his colleagues are exploring how to care forpeople with cancer as early as possible following diagnosis.This project builds on previous work with people with cancerwho were on the GSF register in general practice.‘We wanted to understand how people living with cancerwished to be cared for by a primary care team when they hadadvanced illness,’ Scott said. ‘They all said “start fromdiagnosis” – and they all wanted continuity of care, led bysomeone they could trust.’In the earlier work, groups of patients and carers identifiedthe issues they found most problematic in the course of illness.The groups then proposed a care framework, from diagnosisthrough to end of life, to address these issues. The frameworkwas piloted and positively evaluated in five practices.‘We wanted to understand how peopleliving with cancer wished to be caredfor by a primary care team.’Now Scott and his collaborators are using the care framework,and Macmillan’s cancer care review template, to develop amodel of care that can be rolled out more widely.In the first phase of the project, seven practices in Englandand Scotland, each led by a Macmillan professional, aretesting how best to contact patients, build up relationships,and find out more about what people with cancer want.The collaborators will then draw together their findingsto develop an ‘ideal’ model of care. This will be tested andevaluated in 14 additional practices, in the project’s secondphase, to see if it is appreciated by patients and workablein practice.When the project is completed, Macmillan will havemuch-needed evidence to guide the follow-up of cancersurvivors nationally.Further informationProfessor Scott MurraySt. Columba’s Hospice Chair ofPrimary Palliative CareUniversity of Edinburgh0131 650 2680Scott.Murray@ed.ac.ukFurther informationJanice KoistinenMacmillan Projects Support ManagerWarwick Medical School02476 575 509j.koistinen@warwick.ac.ukMacmillan Voice winter 2009

Male carers 13Meeting the needs of male carersGolf days and comedy nights prove to be successfulways of bringing together and supporting male carersThe Macmillan Cancer Carers Projectoffers support to people who arecaring for someone with cancer.The types of support we offer varyaccording to the needs of each carer,and one of our main attributes is ourflexibility and creativity in being ableto offer support which is truly user-led.We became aware that even thoughmale carers were contacting our supportworkers on a regular basis, someaspects of our services, for examplesupport groups, were not as wellattendedby male carers as by femalecarers. We therefore felt that there wasa gap in our provision and that weshould look at how we could fill this.We began by doing some researchinto other carer organisations acrossthe UK. We eventually located anorganisation in Aberdeenshire wherethey had a male carers’ supportworker who was offering one-to-oneand group support to male carers.Due to the rural nature of the location,he would organise meetings in localpubs where the group might have adrink and play a game of pool or darts.We really liked the sound of thisand began putting our own ideas intoaction. Macmillan kindly offeredfunding for a part-time post (eight hoursper month) and a budget for activities.The first thing we did was re-establishour links with the local hospice andfrom this we arranged a ‘taster’ men’shealth information evening where wehad a benefits adviser, nutritionist andcarer support worker to provideinformation and address any queries.We asked the men who attended whattype of support and activities theywould like in the future.‘I’ve been waiting for along time to be able todo something like thiswith people in a similarsituation as me.’Member of support groupWe then set about the task of recruitinga worker. It’s tough when you arelooking for someone with good skillsin a specific area but only want themfor eight hours a month. However, afteradvertising twice, and using a lot ofour local email links and networks,we found the right person for the job.Carl is a carer himself and has previousexperience of supporting carers.Further informationSara Padhair-TuttonMacmillan Outreach & Support WorkerCarers' Centre for Brighton and Hove, Community Base113 Queens RoadBrighton BN1 3XG01273 234045Sara.Padhiar-Tutton@thecarerscentre.orgHe began by contacting all the malecarers on our list who had shown aninterest in participating. This list included‘We feel that this workhas filled a real gap inservices for male carersand will continue to attractnew carers in the future.’some carers of people with illnessesand disabilities other than cancer, asMacmillan had agreed that this wouldhelp us to get more men engaged inthe project. Carl then arranged aninitial meeting in a café. This meetingshowed that there was a real need andenthusiasm for new activities. In thewords of one carer: ‘I’ve been waitingfor a long time to be able to dosomething like this with people in asimilar situation as me.’Since this first meeting, the grouphas spent a day playing golf with golfingpro, met in the pub, and met for anight of comedy. Carl contacts newcarers as they become known to usand he plans to offer two contrastingactivities each month to suit differentneeds within the group. We feel thatthis work has filled a real gap inservices for male carers and willcontinue to attract new carers inthe future.Related informationOur booklet, Hello, and how are you?,a guide for carers, by carers, can beordered through be.macmillan.org.ukMacmillan Voice winter 2009

14SurvivorshipHelping women cope followingbreast cancer treatmentMichelle Derbyshire and Caroline Misell, Macmillan BreastCare Nurses, discuss the development of an end-of-treatmentworkshop for women with breast cancerIt became evident from our nurse-ledclinic that many women werestruggling following treatment forbreast cancer. Issues included fertility,coping with menopausal symptoms,problems with body image andsexuality, and an ongoing fear ofrecurrence of the disease.To address this significant gap insupport, we decided to develop aworkshop to support women who hadrecently completed treatment. Wewanted to:• provide an opportunity for womento attend a group session followingtreatment• give them the tools and knowledgeto help them face the future withconfidence rather than fear• explore and identify psychologicalneeds using the distress thermometer• signpost women to the mostappropriate avenue of support• establish additional self-managementworkshops for 6–12 months aftertreatment.The service has been running for overa year now and it has helped over 100women. Due to patient demand wehave developed a ‘moving onworkshop’, ‘reconstruction workshop’and ‘chemotherapy and Herceptindrop-in session’. The additionalsessions have provided a more holisticapproach to survivorship, as they arecarried out before, during and after thesurvivorship transition period.The workshops help survivors takegreater control of their lives. Many ofthe sessions are driven by the women’sexperiences, and others can takecomfort in the fact they are not alone.This lessens their feelings of isolationand abandonment. The workshopsalso focus on promoting good healthand self-management. This has lead toimprovement in the women’s feelingsof anxiety, and has encouraged themAddressing gaps in support: Michelle Derbyshire and Caroline Misellto be proactive rather than reactive toissues such as lymphoedema or postmenopausalbleeds, which can bebetter managed when caught early.The use of the distress thermometer(a tool used to screen for psychologicaldistress) has led to a more accurateassessment of psychological needs,prompting referral for additionalcounselling or to a psychologist whenneeded. It is also a useful tool for otherprofessionals involved in the patient’scare, as it gives them a betterunderstanding of the psychologicaland physical needs of the patient.We are constantly evolving andtrying to identify forgotten avenues ofcare. We are currently in the earlystages of developing a workshop forpartners and husbands of women withbreast cancer, as they often needsupport and an opportunity to sharethe same anxieties as the patients.We are also focusing on the educationof professionals involved in breastcare. This includes physiotherapists,mammographers, dietitians and wardstaff, who are often unaware of theproblems women face on a daily basisfollowing treatment. The professionalsalso have the opportunity to share theirknowledge with patients, which mayreduce unnecessary appointments withGPs or other allied health professionals,as patients become far more confidentat identifying and managing symptoms.Our ultimate goal is that no womanshould feel abandoned or alone. Wewant to provide them with the tools tohelp on the road to recovery. Theexperience of cancer will never leavethem, but the fears and anxietiesattached to the diagnosis can bemanaged with good support andeducation.Further informationMichelle Derbyshireand Caroline MisellMacmillan Clinical Nurse BreastSpecialistsSunderland City Found Trust HospitalKayll RoadSunderland SR4 7TP0191 565 6256michelle.derbyshire@chs.northy.nhs.ukor caroline.misell@chs.northy.nhs.ukMacmillan Voice winter 2009

Breast reconstructionEnhanced breast reconstructionservice adds the finishing touchCath Fitzsimmons, Macmillan Breast Specialist Nurse,describes how she and her colleagues developeda full breast reconstruction service15Nipple reconstruction and areola tattooing are importantfinal components of breast reconstruction followingmastectomy. Prior to 2007, there was no service in placeat Salford hospital for these treatments, and womenwere referred on to other hospitals.We found that the majority of patients were not accessingthese final stages of their treatment, as they weren’t willingto transfer their care. It was clear that women wanted tohave the procedure done by a team with whom they werefamiliar with, and had established a supportive and trustingrelationship.As a result, the breast specialist team resolved to meetbest practice guidelines and develop a nipple reconstructionand areola tattooing service, to increase the number ofwomen receiving a full breast reconstruction.The development of this service has significantly increasedthe uptake of this final stage of breast reconstruction. Over40 women have undergone nipple reconstruction and areolatattooing over the last two years, compared to the previousrate of only three or four people a year undergoing thetreatment elsewhere. This demonstrates a clear improvementin access for our patients.The team worked with an eminent specialist plasticsurgeon with specific nipple reconstructive expertise. Thepractitioner who carried out the reconstruction workedclosely with our team in order to become proficient indelivering a high quality, consistent service.‘The development of this service hassignificantly increased the uptake ofthis final stage of breast reconstruction.’Following nipple reconstruction, women wait six months forhealing and swelling to subside prior to having the tattooprocedure. Clinics are held weekly and each proceduretakes approximately an hour.Micro pigmentation (tattooing) is a skill which involvesboth formal and practical training over a minimum of twodays. The first day of training took place in March 2007followed by a second day in June 2007. Supervised practiseand support in all aspects of the procedure provided anexcellent learning experience. This included all aspects ofhygiene and safety. Patient involvement is key to alldevelopments within the breast service. A patient informationleaflet was designed by the breast specialist nurse, inconjunction with a number of people affected by cancer. Thisgroup was then invited to take part in a focus group to discusschanges, ensuring the information was relevant andunderstandable to women requiring this service.Cath Fitzsimmons and Trainer Dawn Chapman from Finishing TouchesInvolving patients from the first consultation, providing clearexplanation, and checking patient understanding throughoutthe process is vital to improving satisfaction with the finaloutcome. Excellent communication skills, in conjunction withempathy and openness, enable women to feel relaxedthroughout the process.We have listened and responded to our patients in orderto develop a service that meets their needs and aspirations.The project has demonstrated the importance of workingclosely with patients, to understand the factors that areimportant to them, and for services to be developed accordingly.‘It is now complete, what a differenceit has made.’Patient feedbackRelated informationOur booklet, Understanding breast reconstruction, can beordered through be.macmillan.org.ukFurther informationCath FitzsimmonsMacmillan Breast Specialist NurseSalford Royal NHS Foundation TrustStott LaneSalford M68HD0161 206 5676cath.fitzsimmons@srft.nhs.ukMacmillan Voice winter 2009

16FundraisingMacmillan’s fundraising programme –from grass roots to nationwide campaigns‘The personal achievement is absolutelyamazing…but on top of that isthe knowledge that you have donesomething that will make a differencein people's lives. However small yourown sponsorship total is in the grandscheme of things, it will make adifference somewhere, to someone.’Barbara Grundy, Sahara 2008.Every year, over 200,000 peoplelike Barbara support Macmillan ina variety of ways. Nearly all of thesesupporters do this because they havehad a cancer experience of their own,know someone who has had one,or because they’ve been cared forby a Macmillan professional. Unlikemany of the big charities, Macmillanreceives virtually no funding from thegovernment, so all our money has tocome from our supporters.Macmillan’s fundraising is special.It began at a grass roots level drivenby local people, groups, schools andcompanies, who gathered together tosupport one of our very successful localappeals, perhaps raising money for aclinical nurse specialist, a Macmillancancer unit, an information centre,or patient grants. From this, ourfundraising programme has maturedto incorporate a wide range of activities,products, and opportunities to suiteveryone. From a strategic point of view,this is intentional. We have a wide productportfolio, which means that in arecession, we can spread the risk andnot have to rely on one income streamalone. So if support from companiesand wealthy people dries-up in hardtimes, then we know we can rely onour other activities to take the strain.Fundraised-income in 2008In 2008 we raised £118 million ofvoluntary income. A big proportion ofthat came from legacies – people whohave had cancer, or have been treatedby a Macmillan professional, often feelcompelled to leave a gift in their wills.So, if you ever get asked by a patientabout this, don’t feel it’s a taboosubject. Some people are grateful forthe opportunity to share their plans toleave a legacy, but if you get into anytechnical or legal areas, then give ourteam a call at once and we’ll help. Go tomacmillan.org.uk/donate/legacies/contacts for your local legacy adviser.We have received some great stuffapart from money, including a herd ofbeef steer, a cat, and many propertieseach year.The rest of the programme has agreat variety of activities. Our eventsprogramme includes the World’s BiggestCoffee Morning, which has been goingfor 15 years. We have a UK-wideprogramme of organised walks, and achoice of UK and overseas challenges tosuit all tastes and fitness levels. We workwith hundreds of companies, large andsmall, who raised over £10 million forus last year. Some of our mostimportant partners include RBS,Nationwide and npower.The role of the Macmillan professionalis vital in our fundraising too. For somany people with cancer you are theface of Macmillan. You can help bysimply letting people know how theycan get involved, by telling them aboutour fundraising, by directing them to thewebsite, or advising them they canleave a legacy. If you ever have thetime, you can help by accompanyingus on corporate pitches, or visitingpotential high-level donors with afundraiser, or hosting a short visit forsome supporters or fundraisers whereyou work. I know how hectic the life ofa Macmillan professional can be, butwhy not give it a go? It might be fun!Further informationAmanda BringansDirector of FundraisingMacmillan Cancer Support020 7091 2066abringans@macmillan.org.ukMacmillan Voice winter 2009

Focus on information17Ensuring equity of access to informationfor people with hearing impairmentCancer affects all people no matter where or who they areMany people with hearing impairment do not have accessto information on cancer and its prevention becauseinformation from health services and the media is notsuitable. Often there is too much text, too few picturesand long, complicated words. This results in people havingproblems getting information to help them betterunderstand cancer.All public bodies have a duty to ensure that access to theirservices is equal for all, and the new Equality Bill (April 2009)places a duty on NHS bodies to consider what action we cantake to reduce the socio-economic inequalities people face.Following my appointment as the first Macmillan cancerinformation facilitator in Wales, I began researching whatcancer information is out there, and in what formats. I foundthere was a lot less cancer information available in alternateformats, such as large print, Braille and picture format.For those who preferred British Sign Language (BSL), therewas very limited accessible information.‘While most people who were hard ofhearing could read and access informationin Welsh or English, for those who usedBSL, difficulties arose throughout theirwhole patient experience.’I am currently studying BSL at my local college. As part ofmy learning, a discussion was held with four local BSL tutorswho are also hearing impaired, and with members of thelocal ‘Physical, Sensory and Neurological Issues group’(which includes BSL users and those who are hard ofhearing). They explained how difficult it was for them toaccess information in formats appropriate to their needs.While most people who were hard of hearing could read andaccess information in Welsh or English, difficulties arose forthose who used BSL throughout their whole patient experience.From an internet search, I found general information inBSL format, but few websites with specific cancer informationin BSL format. Two websites of note are the Deaf CancerWise website and the Prostate Cancer website. CancerScreening Wales has recently produced a BSL video onbreast screening, cervical screening and bowel screening,Further informationPam WedleyMacmillan Cancer Informationand Support FacilitatorWrexham Maelor HospitalCroesnewydd Road,Wrexham LL13 7TD, North Wales01978 726188pam.wedley@wales.nhs.ukand Velindre Hospital in Wales has also produced aninformation video for the deaf community in BSL format –Cancer, How to stay positive.For people who use a hearing aid, the use of a loopsystem, (an induction loop system reduces or cuts outbackground noise) can help improve communication, andaudiology departments can be contacted to help educatestaff in supporting people with hearing impairment. Myaim is to work with other professionals, particularly thoseworking in the area of learning difficulties, who havedeveloped information in picture and easy-read formats.Useful websites and information materialsBritish Deaf Associationwww.britishdeafassociation.org.ukCancer, How to stay positivewww.velindre-tr.wales.nhs.ukCancer screening publications in BSLEmail info@cancerscreening.nhs.ukwww.cancerscreening.nhs.uk/publications/british-signlanguage-dvds.htmlDeaf Cancer Wisewww.ac2.com/webdevelopment/sites/deafcancerwise/welcomeEquality Billwww.equalities.gov.uk/equality_billMacmillan Cancer SupportMacmillan’s website be.macmillan.org.uk offers bookletsand leaflets in both audio format and Braille, and theyhave textphone service on 0808 808 0121, or Text relaysystem available.National Association of Deafened Peoplewww.nadp.org.ukRNIDThe RNID website has a wealth of information to assistprofessionals with communication barriers. The websitealso contains RNID fact sheets for producing informationfor people with hearing impairment. Go to rnid.org.ukThe Prostate Cancer Charity websiteThis website has a BSL guide to the Prostate Gland.Go to prostate-cancer.org.uk/info/bsl.aspMacmillan Voice winter 2009

18Focus on informationBringing cancer informationinto community librariesGinny Cranshaw, Project Manager of the Macmillan Library Projectin Southampton, says providing cancer information in a non-clinicalsetting has its advantagesA three-year partnership between Macmillan andSouthampton City Council is improving access to cancerinformation by providing quality, up-to-date informationin Southampton libraries.Since its inception at the end of 2007, each of the city’slibraries now has an easily recognisable Macmillan cancerinformation point, with a collection of cancer resources ina range of formats. The borrowing of these resources hasincreased by one third.My role has been to facilitate the development ofinformation services within the library setting and to developthe role of the library as a provider of high-quality cancerinformation. The objectives for the project are to:• provide basic Macmillan cancer information inSouthampton libraries• deliver outreach work in libraries to provide guided accessto information and support• increase the awareness of library staff of the needs ofpeople affected by cancer• increase PCT knowledge of this project and where cancerinformation is available.‘Borrowing of cancer resourceshas increased by one third.’I have been pleasantly surprised to find that libraries offermany advantages in delivering this service. They provide aninformal, non-clinical setting that is neutral and close towhere people live, with free internet access for everyone.Libraries are also accessed by people from all backgrounds,ages, abilities and ethnicities.People often don’t want to travel to hospital forinformation, and families and carers can be unsure whereto go to get help. Anyone coming into the library canimmediately see the Macmillan sign and knows that theinformation will be accurate and up-to-date. An appointmentbasedservice has been established to provide guided accessand one-to-one support, and this is regularly used. Librarystaff have been trained to assist people with cancer inFurther informationGinny CranshawProject Manager, MacmillanLibrary ProjectCentral Library, Civic Centre,Southampton City Council,Southampton SO14 7LY023 8083 2460ginny.cranshaw@southampton.gov.ukCelebrating the launch of the Macmillan Library Projectfinding out what resources are available and how to referpeople to more specialist help.Partnership work is a key element of the project.A multidisciplinary steering group oversees the project,with representation from the PCT, public health, cancernetwork, and local Macmillan centre, as well as key partnersand service users.‘This is a great idea and I’m so gratefulfor the help and support provided.’User feedbackA number of initiatives have been developed to support thesurvivorship agenda, including talks from people affected bycancer and a recently established reading group. We alsowork to support key health targets in the city, in particulararound cancer inequalities. We have now delivered anumber of initiatives to support early diagnosis screeningprogrammes. These have included some very successfulcoffee mornings at local libraries for the public to meet stafffrom the bowel screening unit and a skin cancer nurse, andpromotion of mammography in areas with lower thanaverage uptake. The programme of events in libraries isdeveloped in partnership with Macmillan, Health Trainers,Southampton City PCT, and Southampton UniversityHospitals Trust. The events provide a friendly accessibleway for people to access health advice.The project is funded until January 2011 and we plan todevelop the range and quality of cancer information resourcesavailable. Work towards reducing health inequalities willcontinue through targeted promotional campaigns, alongwith the partnership between Southampton Library Service,Macmillan and health professionals.Macmillan Voice winter 2009

Focus on information 19Establishing an informationservice in an area of high needMacmillan Information ServiceManager Janice Watt knew she hadher work cut out for her when settingup in an area that boasts the lowestlife expectancy in the UK. However,she also realised that supportingpeople affected by cancer in EastGlasgow was vital.‘When we saw the statistics, werealised immediately that we wouldbe supporting much younger peoplethan usual through their diagnosis andtreatment,’ said Janice. ‘Also, becauseit’s an area of deprivation, we knewhow important it was that residentshad access to cancer information andsupport right on their doorstep.’Official Scottish health statisticsshow there is a higher incidence ofcancer in East Glasgow than anywhereelse in the city. Statistics published byBristol and Sheffield universities last yearalso showed that residents in Easterhousehad the lowest average life expectancyin the UK at just 66.When establishing the MacmillanInformation and Support Service atEasterhouse in April, Janice’s biggestconcern was whether the residentsof this close-knit community wouldwelcome it. However, she need nothave worried. The corner of The Bridgelibrary that is occupied by the service isusually bustling during the service’stwice-weekly sessions. One factor thathas made the service so successful hasbeen the support of its growing bandof volunteers.‘Statistics published byBristol and Sheffielduniversities last year alsoshowed that residentsin Easterhouse hadthe lowest average lifeexpectancy in the UKat just 66.’‘Without the volunteers, their skills andexperience, we couldn’t run this service,’Janice said. ‘They bring so much to therole and we really appreciate what they do.’Providing advice and information: Senga Dodds and Janice WattWith the help of Zoe Harrison, avolunteering adviser, Janice was ableto devise a comprehensive five-daytraining course. This covered topicssuch as cancer awareness, informationaccess, and listening and communicatingskills.The well-being of the volunteers alsohas to be given utmost consideration.A psychologist visited to give them tipsabout how to look after their ownemotional needs. Senga Dodds, aformer nurse, lives just down the roadfrom Easterhouse, and when she sawan advert for volunteers in her localpaper she knew it was a role she wasready for. Senga had wanted to offersome time as a volunteer ever sinceher mum had died of ovarian cancerjust over a decade ago.Senga, who volunteers around fourhours a week, said: ‘I really enjoygoing to the centre. What reallysurprised me was how positive manyof the visitors are and I often can’tbelieve their strength. You end upfeeling really inspired.‘Of course I was apprehensivebefore the centre opened – worriedthat I would give someone the wronginformation or not being able to helpthem – but the training we receivedwas really comprehensive.‘What really surprised mewas how positive manyof the visitors are andI often can’t believe theirstrength. You end upfeeling really inspired.’‘It also surprised me how muchMacmillan was able to offer me as avolunteer in terms of on-going trainingopportunities. I’m really proud of beinga Macmillan volunteer – I’ve got somuch out of it.’With strong support from partners –East Glasgow Community Health andCare Partnership, NHS Greater Glasgowand Clyde, Culture and Sport Glasgowand Glasgow City Council – Janice ishopeful the service will go from strengthto-strength.Thanks to the kind supportof charity Cancer Support Scotland TakTent, the service is also able to offerfree complementary therapies andcounselling. A dedicated Macmillanwelfare rights officer is also on hand tooffer benefits advice on a regular basis.‘We are very glad to be here forthe people of East Glasgow,' Janicesaid. This is a challenging job butworking with such fantastic volunteersmeans together we can make a realdifference to people affected by cancerwhere and when they really need it.’Further informationJanice WattMacmillan Information ServiceManager0141 531 8105Janice.Watt2@ggc.scot.nhs.ukPhoto courtesy of Trevor GrahamMacmillan Voice winter 2009

20Focus on informationMarketplace unites varietyof cancer support servicesThe Macmillan Information and Support Service atManchester Libraries complements the work of hospitalbasedinformation services. It offers information andsupport to people affected by cancer in their localcommunities. The service also works in partnership withNHS Manchester to raise cancer awareness through healthpromotion activities and outreach in our local communities.The service has three hubs in community libraries innorth, central and south Manchester. At these hubs membersof the community can access local support at any stage oftheir cancer experience. Confidential appointments areoffered to provide emotional support, relevant information,and signposting to further services if needed.The Cancer Support MarketplaceOver the first year of service (and as highlighted in theCancer Reform Strategy 2007) it was identified that peopleliving with or beyond cancer need a variety of services tosupport them as they adjust to life as a cancer survivor. Toaddress this need, and to celebrate the first birthday of theservice, a Cancer Support Marketplace was organised andhosted at Central Library in Manchester earlier this year. Thisevent was a first for Manchester and brought together over25 services ranging from pension advice to hairdressers,and day centres to complementary therapists.As well as a variety of stalls, there was live music, yogasessions, motivational talks, and a lovely buffet. Our aimwas to have a positive and upbeat feel, and the big smileson people’s faces reflected this. The highlight of the day formany people was listening to Leanne Grose speak about herexperience of living with cancer. Despite the discovery of adangerous tumour in her left foot, which led to her havingher leg amputated, Leanne is a young woman with a zestfor life and 'can do' attitude where anything is possible (seeofficialleanne.com). Many people were moved to tears, butwent away with renewed confidence.‘I can now look at so many othersand say with a huge smile: I’m acancer survivor.’Marketplace feedbackOver 65 people from across greater Manchester attendedthe event. Feedback included:• ‘I feel there is an opportunity to have more similar sessions.To let people know they are not alone.’• ‘I came out feeling really enlightened.’For some professionals, the marketplace offered their firstopportunity to network with other organisations supportingpeople living with or beyond cancer. Comments from thesupport services included: ‘We hope there will be moreevents like this,’ and ‘There certainly was a good feelingaround on the day.’ Lisa McKellen, from My New Style, said:Warren Riley and Lisa McKellen with motivational speaker, Leanne Grose‘It was a great opportunity for us to meet people from all thedifferent support and self-help groups and it enabled us toget information to pass on to our clients.’‘Brilliant day, so much to see and do,how could anyone feel down afterspeaking and listening to Leanne!’Marketplace feedbackFuture plansThere is now a plan to make the Cancer SupportMarketplace an annual event. Now we know that it is aworthwhile and valued event, next year will be bigger andbetter. In the meantime, the Macmillan Information andSupport Service at Manchester Libraries will continue to offerindividual support to people in their local community, andlink people to the services they need to support them.Further informationPatty DoranMacmillan Partnership InformationProject ManagerGorton LibraryGarratt WayManchester M18 8HE0161 227 3727macmillan@manchester.gov.ukMacmillan Voice winter 2009

Focus on informationNew online ‘roadmaps’ help identifylocal information and support servicesImproving access to high-quality patient information hasbeen integral to the South East Scotland Cancer Network’s(SCAN) mission since the network’s inception21People with cancer in SCAN haveoften told us that they feel wellinformedabout treatment choices,side effects and care provision.However, many feel they receivedless information prior to diagnosisand at the end of treatment, whentrying to reassemble their life.People with cancer have also toldus they require signposting at the righttime to local services, which addressthe personal and emotional impact ofliving with cancer.The ‘Roadmap to Recovery’projectThe ‘Roadmap to Recovery’ projectaims to ensure that all people withcancer receive the right informationat the right time, throughout theircancer experience. The project, whichbegan in late 2008, is supported byMacmillan and is steered by a smallteam of healthcare professionals andpatient representatives.Online 'roadmaps' identifying keyresources have been produced to helpNHS staff navigate the ever-increasingvolume of patient information resourcesand support services related to thecancer experience.Roadmaps for breast cancer havebeen developed and embedded withinthe new electronic clinical recordsystem for cancer services in southeast Scotland (called CIM – ClinicalInformation Manager). Roadmappingwithin CIM provides staff with access tonationally produced self-care literature,service/treatment guides produced byNHS staff within SCAN, and informationon local support services. Content isthematically arranged and embeddedin the CIM’s form set for use by staffat key pathway points: prior to and atdiagnosis, during and after treatment,and at follow-up.Initial evaluation of the breast cancerroadmap will be undertaken in the springto ascertain its impact in informationprovision to patients at clinic.Exploring information needsA key part of Roadmap project workhas been to consult with people livingwith cancer, and carers, from acrosssouth east Scotland about theirexperiences of receiving informationfrom NHS staff during treatment.Consultation has identified thefollowing recurrent issues:• People wanted more practicalinformation from staff about how toget to hospital (such as maps, publictransport timetables, informationabout car parking at treatmentcentres), timeframes for treatment,and hospital facilities.• Many people simply weren’t awareof their entitlement to benefits orthe availability of local advice andsupport services. It was felt morecould be done to ensure referralto such services during treatment.• People said that the lack ofcoordination of information provisionbetween NHS staff and services indifferent localities often resulted inincorrect assumptions by professionalsabout what information had alreadybeen communicated, at other partsof the clinical journey.The Roadmap project has beendeveloped to assist staff withinformation-giving in these areas.Further informationPeter FairbrotherMacmillan Project Manager –Roadmap to RecoverySouth East Scotland Cancer Network (SCAN)0131 536 9304scan@nhslothian.scot.nhs.ukwww.scan.scot.nhs.uk/roadmap.aspxMacmillan Voice winter 2009

22 Focus on informationCancer information ‘pods’becoming popular with menCaroline Boyer, Macmillan Information and Support ServicesLead, describes how her service is working hard to reachmen affected by cancerSince the opening of its three information hubs, theLincolnshire Macmillan Cancer Information and SupportService has found it has attracted a higher than averagenumber of male visitors. In 2007, 40% of all informationwas taken either by or for men, with slightly less in 2008.Numbers are expected to be higher than the nationalaverage for 2009.The service is hospital-based with three communityoutreach centres. The Lincoln County service, commonlyknown as ‘the Pod’, opened in 2007. The Pod is a flexiblestructure designed to fit into existing spaces. It is the first ofits kind to be used by Macmillan as an information centreand came about due to a lack of a suitable location withinthe hospital site. Two other centres opened in 2008 atGrantham and District Hospital and at Pilgrim Hospital,Boston. All three are well-used by patients, carers, thegeneral public and health and social care professionals.To understand why we have higher numbers of maleusers at the centres, we conducted an audit of 571 malevisitors. It revealed that a quarter of these were in the 41 to54 age group and over half were aged between 55 and 79.A high proportion were men currently undergoing treatmentfor their cancer and a third were carers, friends or familymembers of someone with cancer. Enquires to the centrewere predominately for benefits and financial advice,specific cancer information, treatment and side effects,and psychological support.To further support these findings, each centre hasundertaken a straw poll to ask men their reasons for usingthe service. A number have found the centres to be inviting,with a relaxed atmosphere, and they are ideally located nearclinics and treatment areas. Male visitors also said staff werefriendly and had plenty of time to talk. Some men haveroutinely come into the centres each time they visit the hospitalto give staff an update on their progress. One man said heaccessed the centre after reading about his cancer on theinternet and becoming confused by the large amount ofconflicting information, and he just wanted to get the facts.The men also said that although they were very happy withtheir clinical team, they liked to talk so someone neutral whowas not directly involved in their care. This seemed particularlyimportant when discussing more emotional issues.All of our centres and outreach sessions have promotedMale Cancer Awareness month with displays, and literatureon men’s cancers. Last year we held a male cancerawareness day at Lincoln City Football Club. We wentalong to a home game with a large display of promotionalmaterial and literature, setting up in the bar prior to theEase of access: the information pod at Lincoln‘The men said that although they werevery happy with their clinical team, theyliked to talk so someone neutral whowas not directly involved in their care.’match. We had a testicular cancer quiz which provedpopular with some of the younger men, and although mostof the men were more interested in the Chelsea game onthe big screen, we had a few men come over to see whatinformation we had. We put a lot of male cancer awarenesscards on each of the tables and were pleased to see thatthey had all been taken by the end of the session.The service will continue to look for more innovative waysto reach men who are affected by cancer and to promotecancer awareness among men. With more outreach sessionsplanned, it is hoped that some of these will be in work placesettings or areas which give men easier access to the service.Further informationCaroline BoyerMacmillan Information and Support Services LeadUnited Lincolnshire HospitalsNHS Trust Cancer ServicesLincoln County HospitalGreetwell RoadLincoln LN2 5QY01522 573088caroline.boyer@ulh.nhs.ukMacmillan Voice winter 2009

Events23getTiNGInvolVEdDiary of eventsJanuary24–30 JanuaryCervical Cancer Prevention Weekwww.jotrust.co.uk25–29 JanuaryCancertalk Weekwww.cancertalk.org.uk25–31 JanuaryBe Loud! Be Clear!www.beatingbowelcancer.orgFebruary15 FebruaryInternational ChildhoodCancer Daywww.icccpo.orgMarch1–31 MarchOvarian CancerAwareness Monthwww.ovarian.org.uk1–31 MarchProstate CancerAwareness Monthwww.prostate-cancer.org.uk15–21 MarchDying MattersAwareness Raising Weekwww.dyingmatters.orgMacmillan eventsApril25 April 2010Virgin London MarathonBe part of one of the world’s mostfamous road races by running 26.2miles as part of Team Macmillan.020 7840 7878londonmarathon@macmillan.org.ukwww.macmillan.org.uk/londonmarathonMay16 May 2010Macmillan Cancer Support EtapeCaledoniaJoin our team in the UK’s only closedroadcycle event over an 81 mile coursearound Pitlochry.020 7840 7875biking@macmillan.org.ukwww.macmillan.org.uk/etapecaledoniaMay/September/OctoberBUPA Great Run SeriesJoin in one of the Great Runs – either10km in Manchester, 10 miles inPortsmouth or the world’s biggest halfmarathon in Newcastle. Entries for allthese events open in January 2010 andfill up fast, so don’t delay in signing up.020 7840 7878running@macmillan.org.ukwww.macmillan.org.uk/runningSeptember25 September – 4 October 2010Inca Trail Hiking Challenge – PeruJoin our 10th Challenge to Peru and trekalong the Inca Trail to reach the Lost Cityof the Incas – Machu Picchu.020 7840 7887hiking@macmillan.org.ukwww.macmillan.org.uk/peruSummer 2010Alps Hiking Challenge – FranceSpend five days in the Alps next summerand conquer three of the highest colswhile admiring Mont Blanc - WesternEurope’s highest mountain.020 7840 7887hiking@macmillan.org.ukwww.macmillan.org.uk/montblancMacmillan Voice winter 2009

24Macmillan resourceswe sharE ReSourcEsTo view and order from our range of information resources, visitbe.macmillan.org.uk or call 0800 500 800. All resources are availablefree of charge, but please order only what you need.New resourcesUpdated resourcesCancer of the colon andCancer of the rectum(formerly one booklet calledCancer of the large bowel)MAC12474 and MAC12475Cancer of the large bowel has nowbeen split into two booklets, offeringmore detail about cancer of the colonand the rectum. In both booklets youwill find information about screeningand tests, diagnosis, treatment andside effects, along with financial andemotional support.Life after cancer treatment(formerly called Adjusting tolife after cancer treatment)MAC11661This booklet covers emotional andpractical issues that people may faceafter cancer treatment. Looking atrelationships, travel, finance, work,follow-up care and more, the bookletexplores people’s feelings about thephysical and psychological effects ofcancer, and provides insight into thechanges that may need to be made totheir lifestyle following cancer treatment.A directory of informationmaterials for people affectedby cancer 2009/2010MAC4620_0909The directory pulls together detailsof over 1,100 leaflets, books, andaudiovisual materials from a rangeof organisations. There are nearly 200new entries in this edition. The directoryis also available online atmacmillan.org.uk/cancerpublicationsWe are reviewing the directory. Shouldwe continue to print it annually or is anonline fully searchable version sufficientfor your needs? Email your commentsand feedback toshawkins@macmillan.org.ukBreast cancer in menMAC11915Many people think breast cancer in mendoesn’t happen. While it is rare, mencan develop breast cancer. This newbooklet provides men with the practicalsupport, information and advice theyneed following a diagnosis of breastcancer. It includes a selection of diagramsto illustrate some cancer removaltreatments for breast cancer in men,and lists organisations and websites.Early (localised) prostate cancerMAC11639This booklet gives information aboutearly cancer of the prostate gland,also called localised prostate cancer.The updated booklet covers tests fordiagnosis including the digital rectalexamination test and the prostatespecificantigen (PSA) test. Effects oftreatment on fertility are discussed,and details of support organisationsare provided.Macmillan resources catalogue2009MAC5782_0909This catalogue lists free Macmillanpublications that can provide usefulinformation for people affected bycancer, aid professional developmentand help raise awareness ofMacmillan's services.Macmillan Voice winter 2009