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Macmillanvoicefor Macmillan professionalsIssue 54 autumn 2010In this issueDr Isabel WhiteRemedi/Macmillan Clinical Research Fellowin Cancer RehabilitationFocus on long-term and late effectsSharing good practiceBusiness planning in cancer care

ContentsNews3 The latest news from across Macmillan, including the newly-namedMacmillan Support Line, an update on information prescriptions,and recent survivorship initiativesFeatures8 Late effects: two survivors talk about life after treatment9 A force for change – campaigns update10 ProfileDr Isabel White, Remedi/ Macmillan Clinical Research Fellow inCancer RehabilitationFocus on long-term and late effects11 Improving primary care for cancer survivorsWhat primary care professionals can do to help12 Managing the effects of bowel cancer treatmentInformation about altered bowel habit following treatmentPull out: Sharing good practiceBusiness planning in cancer care13 Developing sustainable exercise programmes forpeople with cancerImproving physical activity during and after treatment14 Good transitional care for young cancer survivorsMoving young people from child to adult cancer services15 Late effects: recognising opportunities within the nursespecialist roleClaire Taylor and Lauren Wiggins talk about how healthcareprofessionals can get more involved in follow-up care16 The Croakies – supporting people with head andneck cancerHelping people live a healthy and active life during and after treatment17 Nursing advice just a phone call awayImproving access to lung cancer nurse specialists18 Dealing with requests for willsHow to talk to patients about wills and legacies19 Prioritising cancer medicinesImproving the recommendation process for funding cancer treatments20 Empowering professionals to improve cancer servicesInformation and support professionals share learning and ideas21 Building palliative care services in TanzaniaA Macmillan professional's volunteering experience22 Photodynamic therapy explainedCarol Goodman, Macmillan Cancer Information Nurse Specialist,explains what photodynamic therapy is and how it is used to treat cancerDirectory23 Long-term and late effects resourcesUpcoming eventsMacmillan resources24 New and updated Macmillan resources available nowWe 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.Contributors this issueDiana Borthwick | Cathy BurtonCharles Campion-Smith | Sarah CostCarol Goodman| Diana GreenfieldRuss Hargreaves | Tudor HumphreysTimothy Jackson | Gillian KnowlesKaren Robb | Claire Taylor | Jacky TurnerTanya Urquhart | Isabel WhiteAlison Whiteford | Lauren WigginsNicky WilliamsEditorial 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 CNSYvonne McKenna, Macmillan Lead Cancer NurseEileen Mullen, User representativeEsther Murray, Macmillan 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 recycled – please recycle.© Macmillan Cancer Support 2010. ISSN 1361-9020.No part of this publication may be reproduced without the permissionof Macmillan Cancer Support. Macmillan Cancer Support,registered charity in England and Wales (261017), Scotland(SC039907) and the Isle of Man charity number (604).MAC5772_09_10Macmillan Voice autumn 2010

News 3NewnamESAMegReatsErvICeThe launch of our combined phone service last Octoberwas a big success. But something’s been missing…a name.To come up with a suitable name we asked peopleaffected by cancer what they thought. Macmillan SupportLine came out as the favourite because it clearly explainswhat people get when they call.The Macmillan Support Line offers help and supportfor people affected by cancer, adding to the vital work youdo. The new name should also make it a lot easier for youto refer people to our phone support service.The line is staffed by a team of specialists from theformer CancerLine, Benefits helpline and cancer informationnurse helpline. They can provide information on topics frombreast reconstruction to radiotherapy, how to get in touchwith local support groups, and practical advice aboutbenefits or employer relations. The information can also beinterpreted into over 200 languages.Recently, health and social care professionals have beenusing the phone service to assist them in the work they do.This service is available to all and we’re happy to provideany information that we can to help.If you haven’t already, head to be.macmillan.co.uk toorder your free Macmillan Support Line publicity materials.We need your help to get the new name out there so pleasekeep recommending and using the service.The Macmillan Support Line on 0808 808 00 00 is openMonday to Friday, 9am–8pm. Calls are free, including allmobiles. For the hard of hearing, a textphone service isavailable on 0808 808 0121, or the Text Relay system.Transforming servicesUK-wide Macmillan professionals eventNow in its fourth year, the Macmillanprofessionals event has gone fromstrength to strength.Almost a year ago, we gatheredover 300 Macmillan professionals inLondon to focus on innovation andimprovement in services.We hope that this year will be evenbetter. The focus of this year’s eventwill be ‘Transforming services:meeting the quality and productivitychallenge.’We’ve invited keynote speakers toaddress the theme and to present lotsof food for thought.Throughout the event there will beopportunities for networking, sharinggood practice with fellow professionals,and to hear about what is going onacross Macmillan. We’ll also provideyou with tools that you can take awayto help you in your work.You should have received yourinvitation by now and, if you haven’talready looked at the programme andregistered for the event, then go tomacmillan.org.uk/learnzone tofind out more.The event is one of many waysthat we aim to support Macmillanprofessionals, so be sure you checkout what else is available on theLearn Zone.4–5 November 2010MacmillanprofessionalseventRenaissance Hotel,HeathrowMacmillan Voice autumn 2010

6 NewsIn conversation with …Julia Palca, Macmillan ChairSo, what brought youto Macmillan?I was diagnosed with cancer of theupper right parotid (the saliva duct) in1998. It’s a rare form of cancer andthere was no information available atall. I didn’t have a Macmillan nurse andthe doctors were very cold and clinical.I was often a bit of a wreck when Icame away from seeing them. After myexperience I wanted to get involved witha cancer charity so I joined Cancerlinkin 1999, and we merged withMacmillan in 2001.Being Chair is a pretty big job.What made you go for it?Macmillan is in a fantastic place rightnow. I’m very excited to have theopportunity to help build on the growthwe’ve already achieved in the nine yearssince I’ve been involved.What’s your vision for thefuture of Macmillan?I want everyone who is diagnosed withcancer to know we’re here for them. Notjust to provide nurses, but for all theirneeds. I’m also very keen on helpingcarers get maximum input and support.What do you do when you’renot working with Macmillan?I’m a solicitor in a predominantly medialaw firm. Some of my clients are quitewell-known, including Tom Cruise. I’msemi-retired now so that gives me thetime to follow other interests and devotemore time to Macmillan.The Chair and the board of trustees areresponsible for the overall control andstrategic direction of Macmillan, includingensuring that we are solvent, well-runand that we deliver our objectives.Evaluating the impactof pelvic radiotherapyOver 12,000 people in the UK undergo pelvicradiotherapy each year as part of their cancer treatment.Long-term side effects from this treatment can occurfrom six months to many years later, and may havea significant detrimental effect on quality of life.At Cambridge University Hospital, we will be evaluatingthe impact of pelvic radiotherapy on quality of life as partof the National Cancer Survivorship Initiative's (NCSI) pelviccancer project. This will include looking at the level andseverity of gastrointestinal symptoms following intervention bya gastroenterologist, and the management of bowel symptoms.This evaluation study will be carried out over the next sixmonths and will include 10 participants who have receivedradiotherapy for a gynaecological cancer and who presentwith bowel complications such as diarrhoea, pain, rectalbleeding, urgency or faecal incontinence.Our aim is to develop clear referral pathways within aspecialist team for cancer survivors living with the consequencesof their treatment. We hope to:• streamline the management of chronic health issues facedby cancer survivors, providing cost-effective casemanagement with more appropriate referrals,investigations and treatment• encourage self-management with appropriate education sopeople can self-refer if and when appropriate• develop appropriate studies to evaluate service delivery andpromote best practice• reduce the number of inappropriate investigationsundertaken by non-specialist health professionals• facilitate novel practice and skill-mixing to improvepatient outcomes• facilitate future research studies.This evaluation will contribute to the NCSI’s work to developa national model of care for this group of people. It will alsoinform development of similar services for people withcomplex needs following treatment for cancer.For more information, contact Lisa Punt, MacmillanConsultant Radiographer in Gynaecological Oncology, on01223 216580 or at lisa.punt@addenbrookes.nhs.ukYou can also order Macmillan's booklets on the late effectsof pelvic radiotherapy at be.macmillan.org.ukMacmillan Voice autumn 2010

Online tool helps peopleprepare for late effectsPeople living with and beyond cancer often experiencelong-term effects as a result of their cancer treatment.Current research suggests they would benefit by becomingactively involved in managing these consequences.However, many are often not given enough guidanceand information about the issues they may face and howto deal with them.To improve this situation, the National CancerSurvivorship Initiative (NCSI), in partnership with serviceusers, piloted the Livestrong Oncolink Care Plan, an onlinetool for cancer survivors in the USA. It generates summariesof potential consequences of treatment, whether they bephysical, psychological, sexual or social in nature.The project, named the`1000 People Project’, set out toshow that a tool such as this would help people think aboutissues which may affect them following treatment for cancer,and to make more informed choices about managing these.A link to the Livestrong Oncolink Care Plan software wasavailable on the NCSI website between April and August thisyear. People who completed the survey received apersonalised care plan based on their cancer experience.They were then asked to complete a satisfaction surveyregarding the plan they had received.Pilot project helps women severelyaffected by cancer treatmentNews 7‘Cancer survivors believed it was importantto take control of their health’The large majority believed the care plan was worth doingand said they learnt something new based on theinformation they were given. The general feedbackhighlighted that cancer survivors believed it was important totake control of their health and many had not been informedabout some of the potential side effects or consequences oftheir treatment.The NCSI hopes this study will help create and define atool available to all cancer survivors in the UK, ultimatelyhelping individuals to self-manage their own care.The 1000 People Project Report is now available on theNCSI website – ncsi.org.uk/consequences-of-cancertreatment/oncolink-projectA project to help women affectedby radiotherapy in the 1980s hasimproved their well-being andidentified useful support services.The women belong to a group calledRAGE (Radiotherapy Action GroupExposure) and, as a result of theirbreast cancer treatment, have severe,radiation-induced conditions. Theseinclude extreme pain, lung problems,paralysis in the shoulder, arm or hand,and lymphoedema. However, they hadbeen getting little or no recognition orhelp for these conditions.‘It really was such a reliefto be able to talk topeople who understoodmy situation’Macmillan worked with the Departmentof Health and the National CancerAction Team to find out what supportthese women needed. Followingconsultation, the project team pilotedself-managed grants and specialistmultidisciplinary clinics with RAGEmembers.The self-managed grant (£750)was offered to help with daily living orpersonal care. Recipients indicatedthat the grant could make a significantdifference to their well-being. For manyRAGE members, the grant representeda small but important recognition of along struggle to have their conditionacknowledged.The project also set up 15 pilotclinics across the country. Seventy womenattended the clinics and saw a minimumof an oncologist, a pain specialist andan occupational therapist. Clinicsprovided an assessment and care planand, where possible, identifiedcontinuing local support.This pilot found it’s possible forpeople with complex injuries toself-assess and self-refer, and thateffective assessment and care planningcan be carried out in regional centres.Women who attended generally foundthe experience very positive: ‘It reallywas such a relief to be able to talk topeople who understood my situation,’said one. Several pilot centres arekeen to continue.The project team has recommendeda model of a specialist hub providingtriage, assessment and intensive therapy.The hub centre could refer to localspecialists and provide informationfor patients and health professionals.The National Cancer Action Teamhas submitted the model to thenational specialist commissioningteam for England.This project forms part of theNational Cancer SurvivorshipInitiative’s Consequences of Treatmentwork stream. The RAGE project reportis available at ncsi.org.uk/consequences-of-cancer-treatment/rage-projectMacmillan Voice autumn 2010

8Cancer experienceLate effects: two survivoabout life after treatmeAnn MuirAnn Muir, 66, was diagnosed withcancer of the larynx 11 years ago.She had a total laryngectomy andradiotherapy treatment, and nowspeaks with the aid of a valve.She shares how the cancer and itstreatment have affected her life.Speaking with a valve has totallychanged my life. Communication is somuch part of living and, as I get older,my artificially-produced voice is gettingweaker and I find it harder to talk.‘The very mention ofcancer can throw us intoa state of confusion andfear, and we don’tregister everythingthat’s told to us’Some people are unsure of how toreact when they hear me speak – someare frightened, others think it’s funnyor want to know if I have a sore throat.I often give a short explanation on whymy speech is different, but it can beupsetting when someone laughs. Youlearn to cope – at least most of us do.I miss not being able to swim orwalk as much as I’d like. I get tiredfrom lack of air and find it impossibleto walk and talk at the same time.But I have been fortunate in that Icould return to work.Rheumatics have set in round myneck, arm and shoulder, which can bepainful. Surgery has caused muscle lossin my neck. I take painkillers on a dailybasis to help with this. As a result, I amoften constipated and have to takemedicine to counteract this.With the help of the right medicationand advice from caring healthprofessionals, most of us managewell. We all need reassurance fromtime to time and this is where healthprofessionals can help.We need time to make ourselvesunderstood. We may need to havethings repeated several times, especiallybefore and immediately after treatment.The very mention of cancer can throwus into a state of confusion and fear,and we don’t register everything that’stold to us.My advice to health professionalswould be to tell us in simple terms,anything we need to know, repeatif necessary, and have a little patiencewith us.Wyn JonesWyn Jones, 46, was diagnosed witha nasopharyngeal cancer and asecondary cancer in his glands in2004. He received radiotherapy andchemotherapy treatment, which curedthe disease, but he is now living withthe late effects of this treatment.Having cancer totally changes your life,but so do the side effects of treatment.I had a dry mouth almost immediatelyafter treatment. I’ve also had dentaldecay because my saliva glands weredamaged by the radiotherapy and I ammissing the natural enzymes that helpclean teeth and prevent decay.‘I was told by myhealthcare professionalthat they hadn’t wanted totell me about this problemearlier because they didn’twant me to worry’I have closure of the mouth, which willget worse with time if left untreated.I thought the food I ate was gettingbigger, but my mouth wasn’t openingMacmillan Voice autumn 2010

A force for change 9s talktLong-term effectsSide effects that continue formonths after treatment andmay become permanent.Late effectsNew side effects thatdevelop months or yearsafter treatment.as much as before. I was told by myhealthcare professional that they hadn’twanted to tell me about this problemearlier because they didn’t want meto worry.I have pain and stiffness in my neck,which is getting worse over time.I also suffer from fatigue. This canmake work difficult and I need to sleep alot, sometimes taking days off to do so.Professionals still think the less theytell you the better. Late effects are amassive learning curve for both patientsand professionals. It is important tokeep people informed, because ifsomething unexpected happens, youpanic. If you break a bone, you are toldwhat to expect after the healing, butwith cancer treatment, nothing is saiduntil you ask. The treatment is superb –it’s just the next stage that needs to beaddressed, and experiences shared inorder to build up a wider picture ofwhat to expect.I have a strong family who havestuck together. I know it is a cliché,but I am thankful for what I have.campAignsBeating fuel povertyMacmillan has been campaigning formore support for people with cancerwho are struggling to pay their fuelbills. Many people tell us they feelthe cold more since their diagnosis.Julian is 43 and was diagnosed withintestinal cancer in 2008.‘Because my cancer treatmentmakes me feel the cold so badly, I haveto keep the heating on nearly all thetime, even in the summer. The billshave gone up and with winter aroundthe corner I am even more worried asI’ve had to give up work and have verylittle coming in.’Macmillan is campaigning forparticularly vulnerable people withcancer to be included in new plans formore support with fuel bills. Thegovernment is expected to hold aconsultation on who will be eligible forthis support. Go to macmillan.org.uk/fuelpoverty to back the campaign andfor more information on how you cansupport your patients who areexperiencing fuel poverty.Getting back to workRob, 48, lives with his family inNewcastle. He was diagnosed withchronic myeloid leukaemia in 2008.Focusing on getting back to workhelped him get through treatment.But it was not without challenges.‘When I was diagnosed with cancerI wanted to get back to work to take mymind off what was happening.‘It was difficult to get any informationabout how long I might be off for aftertreatment or what the long-term effectsof the illness would be.’We are trialling a new model ofvocational rehabilitation for people withcancer as part of the Work and Financestream of the National CancerSurvivorship Initiative. Seven pilot sitesaround England are testing the model,which aims to support people withcancer to remain in, or return to workduring or after treatment. To find outmore about this exciting project go toncsi.org.uk/vocationalrehabilitationFor more information on ourcampaigns and how to get involved,please contact us atcampaigns@macmillan.org.ukMacmillan Voice autumn 2010

10ProfileDr Isabel WhiteRemedi/Macmillan Clinical ResearchFellow in Cancer RehabilitationWhat will your research fellowship involve?The main objective of my post is to develop and evaluate a clinical assessment systemfor women who have had pelvic radiotherapy. 50–80% of women undergoing pelvicradiotherapy will experience transient or more persistent sexual difficulties.We will be designing and testing an assessment that can be completed on atouch screen. This will mean medical staff can receive the information beforeseeing the patient for their outpatient consultation.Training for doctors on how to interpret results will be provided withlocally-derived management and referral guidelines for female sexual difficulties.Why are you targeting this patient group?Women are more neglected in the provision of sexual rehabilitation and their sexualdifficulties may be harder to address using biomedical strategies alone. The twomain sexual concerns encountered are loss of desire and sexual pain disorders.The majority of women should be able to get support from their clinical nursespecialist (CNS), but approximately 10% of women who experience sexual difficultiesassociated with cancer treatment may benefit from referral to psychosexual therapy.Most cancer centres don’t offer this kind of therapy, but it may be available fromwider hospital or community services. However, in terms of implementing thestudy’s findings, the emphasis is on how we can use existing services andresources more effectively.What is unique about the research project?This assessment will be different from most because it links outcomes from thewoman’s self-assessment with local management guidelines and referral pathways.In this way, clinicians are supported to identify the most appropriate managementand onward referral to meet the woman’s sexual or relationship concerns.How does your research link in with your clinical work?I recently started a new role at the Royal Marsden NHS Foundation Trust. I will beexploring how a comprehensive sexual rehabilitation service can complementexisting services offered by the Trust. An erectile dysfunction service is alreadyoffered for men, but the Trust recognise that this doesn’t meet other types of sexualdysfunction experienced by men, nor do current services address the persistentand more complex female sexual difficulties encountered at the cancer centre.This new service will cover the whole range of sexual and relationshipconsequences of cancer and its treatment. We also plan to engage staff involvedin sexual rehabilitation at all levels, from ward staff who may need somefoundation level training, to ensuring that CNSs are confident to addresscommonly encountered sexual concerns. I will be managing a smaller caseloadof people with more complex and enduring sexual and relationship difficulties.Who are you inspired by?Robert Tiffany at the Royal Marsden – he was committed to improving cancerservices. He fought tirelessly to raise the profile and professional credibility ofoncology nursing.Professor Sanchia Aranda, Director of Nursing Research at the PeterMacCallum Cancer Centre in Melbourne – she has developed an institutionalphilosophy and supportive infrastructure that promotes the conduct and useof research by clinicians and clinical researchers working in partnership toimprove cancer care.Professor Christine Norton at Imperial NHS – she is a clinical academic whichis what I aspire to be. She works in bowel dysfunction (researching and seeingpatients) using research to explain and solve complex clinical problems.LocationFlorence Nightingale School ofNursing and Midwifery, King’sCollege, LondonIsabel White is embarking on apost-doctoral research fellowshipfocusing on sexual rehabilitationwithin oncology. Isabel is acancer nurse and psychosexualtherapist, working in clinicalpractice and research. She hascontributed to Macmillan’sbooklets on the late effects ofpelvic radiotherapy, acted as anadviser for Macmillan’scampaign on sex, relationshipsand cancer and is a member ofthe National Cancer SurvivorshipInitiative’s Consequences ofCancer Treatment Collaborative.In postSince 2009Further informationDr Isabel WhiteRemedi/Macmillan ClinicalResearch Fellow in CancerRehabilitationFlorence Nightingale Schoolof Nursing and MidwiferyDivision of Health & SocialCare ResearchKing’s College LondonJames Clerk Maxwell Building57 Waterloo RoadLondon SE1 8WA020 7848 3038isabella.white@kcl.ac.ukMacmillan Voice autumn 2010

Focus on long-term and late effects 11Improving primary carefor cancer survivorsWhat primary care professionals should look out for when caring forpeople after their cancer treatmentIt has been estimated that there are now more than twomillion people in the UK living with a cancer diagnosis.Many of these people will experience long-termconsequences of cancer, both of the disease itself andof its treatments.A survey by Macmillan in 2008 showed that 44% ofpeople with cancer weren’t aware of the possibility oflong-term physical side effects, but 78% of them hadexperienced at least one of a list of possible side effectsin the preceding 12 months. The survey also indicated thata majority of people living with cancer would go to theirGP in the first instance for help with their symptoms.People with cancer will be increasingly discharged toprimary care for follow-up and we need to be alert fortreatable problems.Consequences of treatmentLong-term and late effects can arise anytime from a fewweeks or months after treatment, to 3–4 years later.Physical effects include fatigue, weight gain, lymphoedema,neuropathic pain, heart damage leading to an increased riskof cardiovascular disease, lung damage, bowel and bladderdysfunction, and increased risk of osteoporosis. In addition,there is a risk of cancer survivors developing a secondcancer. Many people also suffer from anxiety, depression,memory loss and problems with concentration, leading tolower educational attainment for childhood and adolescentcancers, and increased risks of job loss, financial problems,marital breakdown and divorce.Cardiovascular disease Some cancer treatments forchildren, adolescents and adults can put them at risk forcardiovascular disease in later life. In particular,radiotherapy to the left side of the chest and somechemotherapy agents such as anthracyclines are known toincrease the risk of the patient subsequently developingcardiovascular disease.Osteoporosis Hormonal treatment, including the use ofGnRH analogues for prostate cancer and aromataseinhibitors for breast cancer, is associated with an increasedrisk of bone fractures due to osteoporosis.Bowel problems About half of the 80,000 cancer survivorswith a history of pelvic radiotherapy will have bowel and/orbladder problems. Half of them will have severe problemsincluding diarrhoea, faecal urgency and incontinence.See page 12 for more information.The role of primary healthcare professionalsBe aware of the possibility of late effects for people with ahistory of cancer and keep them in mind when a patientpresents with new symptoms. Patient records should beclearly coded with details of past oncological treatmentsand also coded as ‘At increased risk of…’ if appropriate.Cancer specialists need to be very clear in the informationthey provide to both patients and GPs about possiblelong-term consequences. We then need to have systems inplace to ensure that information is appropriately recorded andcoded on the patient’s GP records. Practices can create aregister of people who have had oncological treatment so theycan be highlighted on their computer system and alerts set.‘We should proactively ask patients aboutpossible treatment-related problems andpsycho-social effects as part of anyregular review’We should proactively ask patients about possible treatmentrelatedproblems and possible psycho-social effects as part ofany regular review. As second cancers can occur in peoplewho have already had one cancer, it’s vital to give stronglifestyle advice to all people with cancer to try to reducethat risk. For people with increased chance of developingcardiovascular disease or osteoporosis, we need to activelyidentify and manage other risk factors.We need systems in place to ensure those identified atincreased risk of long-term consequences of cancer or itstreatment are given appropriate care and support to lead ashealthy and active a life as possible, for as long as possible.This article originally appeared in GP newspaper.Reproduced with permission from Haymarket Medical.Further readingIt’s no life, Macmillan’s report on living with the long-termeffects of cancer, is available at macmillan.org.uk/campaigns(in the research and publications section). We also producebooklets to help people manage the effects of cancer andits treatment. See the back page for more details.Further informationDr Cathy BurtonMacmillan GP Advisercalburton@gmail.comMacmillan Voice autumn 2010

12Focus on long-term and late effectsManaging the effects ofbowel cancer treatmentAlison Whiteford, Expert Information Development Nurse,highlights some of the bowel problems people may developafter treatment for bowel cancerMore than 37,500 people in the UK are diagnosed withbowel cancer each year. With improvements in diagnosisand treatment, about half of people diagnosed will live forat least five years after diagnosis.Most people have side effects during and for a few weeksafter their treatment. Usually these effects lessen and disappear.But sometimes side effects can continue for months and maybecome permanent. Some people who’ve had radiotherapy,may develop new side effects months or years later.Data from clinical trials suggest that after surgery forrectal cancer, up to 25% of people have significant long-termissues. For people who have surgery combined withradiotherapy, the proportion with long-term problems maybe as high as 50%. These problems may include fatigue andchanges to bowel, bladder and sexual function.‘Some people describe limiting visitorsto their home and avoiding going out orattending social occasions because of theunpredictability of their bowel habit’One of the most challenging symptoms people may have tocope with is altered bowel habit. With newer treatments,such as sphincter preserving surgery, now most people won’tneed to have a permanent colostomy. But there may belong-term changes in their bowel function. People mayexperience bowel frequency (sometimes 12 times a day ormore), they may be less able to hold on when they feel theurge to go, and sometimes they may not be able get to atoilet in time or may have leakage of stool (incontinence).‘There are many things that people cando to manage and improve their bowelsymptoms, for example, by makingdietary changes’These symptoms can cause emotional as well as physicaleffects. Bowel function is a sensitive issue. People can find itdifficult or embarrassing to talk about and this may lead towithdrawal and isolation. Some people describe limitingvisitors to their home and avoiding going out or attendingsocial occasions because of the unpredictability of theirbowel habit.There are many things people can do to manage andimprove their bowel symptoms, for example by makingdietary changes such as modifying fibre intake and reducingcaffeine. Some people keep a food diary to help themidentify foods that can trigger problems so that they canavoid or cut down on them. If changes to diet aren’tsufficient, taking antidiarrhoeals such as loperamide canreduce diarrhoea and incontinence. Healthcare professionalscan offer advice on how to use these drugs for optimumeffect. Planning ahead for a trip out by making sure there iseasy access to a toilet and carrying a change of underwearand wipes in a sealable bag can increase confidence aboutgoing out.‘Learning how to control and cope withbowel symptoms can take time andperseverance’Learning how to control and cope with bowel symptoms cantake time and perseverance. Healthcare professionals can bean invaluable source of information and support. In additionto giving advice on bowel retraining, diet, skin care, drugsand continence products, they can also discuss how to talkabout symptoms to friends and family and provide contactdetails for support groups.It’s important that people coping with bowel symptomsare reviewed regularly. If symptoms continue, referral forspecialist assessment of additional measures is appropriate.These may include specialist dietary assessment andmanagement, pelvic floor retraining, using electricalimplants to improve bowel control (sacral nerve stimulation)and counselling.Related informationOur booklet, Managing the late effects of bowel cancertreatment, can be ordered through be.macmillan.org.ukor by calling 0800 500 800.Further informationAlison WhitefordExpert Information Development NurseMacmillan Cancer Support3 rd ‚ 4 th floor Cranston House104/114 Argyle Street, Glasgow G2 8BH0141 223 7684awhiteford@macmillan.org.ukMacmillan Voice autumn 2010

Focus on long-term and late effectsDeveloping sustainable exerciseprogrammes for people with cancer13Physical activity contributes to goodhealth and well-being, and thebenefits of exercise during andafter cancer treatment are nowwell-documented. [1]Despite clear recommendations onhow to integrate exercise into clinicalpractice settings, [2] few cancer centresin the UK offer comprehensive exerciseprogrammes.Below are details of two clinicalresearch projects which are helping tofill this gap.Exercise during treatmentThe physiotherapy department at Bart’sHospital, and the School of Sports andExercise Medicine at Queen Mary’sUniversity, London have successfullytested an exercise programme forwomen undergoing treatment forbreast cancer.‘Many women wanted toimprove their fitness, butwith proper supervisionand instruction’The team at Bart’s has been developingits services for almost three years. Theysee women immediately after surgeryand as outpatients to ensure they canmove and function well.Many women wanted to improvetheir fitness, but with proper supervisionand instruction. They also wanted toexercise in a ‘safe environment’, iewhere they didn’t feel self-conscious orvulnerable. This led to the developmentof a new exercise programme.Women were recruited fromfollow-up clinics and asked to attend acircuit-style class for six weeks. Womenwere also encouraged to increase theiractivity at home.The classes were evaluated bymeasuring physical fitness, armmobility and psychological health.Results showed that all womenimproved their fitness and armmobility, and they enjoyed exercisingwith their peers.This was a small study with manylimitations, but it showed real benefitsfor these women. The physiotherapyteam is now trying to generate fundingto continue and develop the classes.Exercise after treatmentMacmillan has funded a programmeaddressing the benefits of physicalactivity and lifestyle informationfor people who have finishedcancer treatment in NHS Lothian.The project consists of two, 12-weekphysical activity rehabilitationprogrammes. It is being evaluated withphysical and psychological measurementtools such as the Hospital Anxiety andDepression Scale.Programme participants meet weeklyfor two hours. Each session consists of45 minutes of exercise followed by aninformation session on lifestyle. Thiscovers topics such as managing stress,healthy eating, financial issues andthe importance of breathing technique.At the end of the 12 weeks,participants are given help to createtheir own activity programme if theywant to continue. They are also givena free, three-month membership to agym of their choice within the localarea. In addition to the programme, afour-day workshop for fitness instructorsalready working with clinical populations(eg pulmonary and cardiac rehabilitation)has been run with the aim of developingsustainable programmes.Although we are only half waythrough the study, preliminary resultsare positive. Participants have increasedphysical ability and confidence, and aremotivated by others to improve theirfitness level, as well as gaining valuablemutual support from the group.This has been a positive experiencefor the research team, who have beenamazed by the enthusiasm and driveof the group.References[1] Stevinson C et al. Exercise interventions forcancer patients: systematic review of controlledtrials. Cancer Causes and Control. 2004.15: 1035-1056.[2] McNeely et al. Cancer Rehabilitation:Recommendations for Integrating ExerciseProgramming in the Clinical Practice Setting.Current cancer therapy reviews. November2006. Vol. 2, No. 4, pp.351-360(10).Related informationOur booklet, Exercise after cancertreatment, can be ordered throughbe.macmillan.org.uk or by calling0800 500 800.Further informationDr Karen Robb, ConsultantPhysiotherapist, Bart’s Hospital0207 601 8240Gillian Knowles, Nurse Consultant;members of the Consequences ofCancer Treatment Collaborative;and Diana Borthwick, ClinicalNurse Specialist in Lung Cancer0131 537 3793diana.borthwick@luht.scot.nhs.ukgillian.knowles@luht.scot.nhs.ukMacmillan Voice autumn 2010

14Focus on long-term and late effectsGood transitional care foryoung cancer survivorsMore and more children with cancerare surviving into adulthood. Withincreased survival, health servicesface the challenge of providing carefor this group as they move into adultlife. Accurate information about theirproblems and a realistic viewof the future are essential.Tanya Urquhart, Macmillan ClinicalNurse Specialist at Sheffield Children’sNHS Foundation Trust, coordinates thetransition of young people in theirregion from paediatric to adult care.Diana Greenfield, Macmillan NurseConsultant at Sheffield TeachingHospitals, coordinates the service andlate effects care in the adult hospitalsetting. Both Tanya and Diana are partof a wider late effects team.At around 16, young cancersurvivors are transferred from thechildren’s hospital to a specialist adultlate effects clinic at Sheffield TeachingHospitals. Timing is flexible and transferdepends on the needs of the youngperson and their growth and pubertalstatus. Paediatricians are trained todeal with any problems that can ariseduring these stages. The time sincethe end of treatment, and emotionaland psychological readiness arealso considered.‘The transition to adult carecan provide a positive andoptimistic sense of future’At transition, Tanya produces asummary of diagnosis, treatment,complications of treatment, currentproblems and medication. This includesany problems the young person mayencounter as a consequence of theirtreatment. Common medical problemsfor this group include disturbedendocrine function, neuropsychologicaldifficulty, cardiomyopathy, obesity,osteopenia and second malignancy.Details of previous or currentinvestigations are recorded alongsiderelevant abnormal results. These forma care plan which is shared with theyoung person and clinical team.A psycho-social assessment is alsoincluded, as are any relevant familyconcerns or issues regarding school orcollege. The team ratifies the care planand makes decisions about appropriatefollow-up.The specialist late effects clinic isrun by an experienced multidisciplinaryteam. Having a clinic like this has anumber of benefits. The transition toadult care can provide a positive andoptimistic sense of the future, andadult clinics provide a more suitableenvironment to discuss age-relevanthealth information (for examplecontraception and fertility). However,a young person may feel intimidatedby the shift between care settings.Talking to professionalsBeing comfortable in adult healthcaremeans being able to communicatealone with health professionals – thiscan be a new experience foradolescents who are used to the closesupport of family members duringclinical encounters.To make the experience less alienfor young adults, the paediatric teamensure they have some experience withlone consultations from around the ageof 13. Allowing the adolescent to takemore control of their health meansurging parents to accept their child’srole and learning to provide less directsupport. This is especially difficult forpeople treated at a very young age,as they often have little or no memoryof the severity of their illness.Moving forwardThe transition process can beconcerning for young people and theirfamilies, particularly relinquishing thepaediatrician they know and trust.For the parents or caregivers, the moveto adult services marks a shift in thehealth perception of their child.‘Allowing the adolescent totake more control of theirhealth means urgingparents to accept theirchild’s role and learning toprovide less direct support’Paediatrics offers a more holisticapproach with a focus on the family,valuing their input throughout the careof the young person. In contrast, theadult healthcare environment encouragesthe individual to take control of theirhealth. A more formalised approach totransition is being developed. This willhelp further prepare young people forgreater independence and allow theirparents or carers to step back andaddress their own feelings. Encouragingyoung adults with chronic illness to bemore autonomous regarding theirhealth involves providing a suitableeducation programme and this issomething Diana and Tanya are keento develop.There is increasing interest inappropriate provision of services foryoung adult survivors of childhoodcancer. The development of theseservices will depend on a newgeneration of nurses and doctorswho are informed about childhoodillnesses and are interested in theirconsequences. Diana and Tanya takean active role in the teachingand education of colleagues locallyand nationally.Further informationDr Diana Greenfield, MacmillanNurse Consultant, Clinical Lead andHon Senior Lecturer in Late Effects,Sheffield Teaching Hospitals0114 226 5592diana.greenfield@sth.nhs.ukorTanya Urquhart, Macmillan CNSPaediatric and TYA Late Effects,Sheffield Children's NHSFoundation Trust0114 226 7815tanya.urquhart@sch.nhs.ukMacmillan Voice autumn 2010

Focus on long-term and late effects15Late effects: recognising opportunitieswithin the nurse specialist roleClaire Taylor and Lauren Wiggins offer some advice on howhealthcare professionals can help support people after treatmentThere are small differences we can make to improve thequality of life for people after cancer treatment. Thesedon’t have to be onerous or time consuming – there maybe reported projects and ideas which you can simplyreplicate. The National Cancer Survivorship Initiativewebsite – ncsi.org.uk – is a good place to start. It containsdetailed information about the initiative’s work streamsand test communities.You may be supporting cancer survivors already withoutrealising or formally acknowledging it. If so, you could makethis activity more explicit or turn it into a commissionableaspect of your service. You could routinely collect data aboutwhen and why you see patients after treatment, along withreported outcomes of any interventions offered. If youalready have an established service for people sufferingfrom late effects, then it is time to share your experiencesand contribute to discussions on how nurse specialists canfeasibly and effectively address this issue.Case studyIn the Macmillan Urology CNS (cancer nurse specialist)service at the North West London NHS Trust, we exploredseveral ways to help people adapt to and cope with theside effects of treatment. Since people with prostate cancermake up the majority of this caseload, a focus group wasconducted with men who had completed radical treatmentwithin the past year to identify issues important to them fortheir recovery and survivorship.‘It is time to share your experiences andcontribute to discussions on how nursespecialists can feasibly and effectivelyaddress this issue’The main issue for these men was the impact of treatmenton their sexual function and associated sexuality – a findingthat is widely demonstrated in literature. [1, 2] They wanted anerectile dysfunction service run by someone with specialistknowledge and skills in the field, ideally a member of theirexisting healthcare team. This particular service is notcurrently available within the Trust and these findings willbe used to strengthen our proposal to develop services.Joint workingAnother approach may be to team up with other professionalsto provide greater continuity and coordination of care alongthe disease trajectory. For example, the Macmillan colorectalcancer CNS at the Trust now liaises with the stoma carenurses to support people experiencing altered bowel functionfollowing treatment.By working together, we can provide the most appropriateinformation to these people before treatment, signpostingto extra help should problems occur. We have also reviewedthe information patients receive on completing treatmentto ensure it details possible side effects, supportsself-management and generates realistic expectations ofwhat life will be like once active treatment is completed.Follow-upA more challenging issue for CNS services is how we canmeet the needs of people who are no longer ‘in the system’and/or not seen through our regular follow-up channels.It may be about getting ourselves known at the voluntarysector level, for example, at support groups and in primarycare settings or the local branch of Citizens Advice Bureau.Or we could be more creative and flexible in how we deliverour care. For instance, the Macmillan breast care nurses atour trust have established a good working relationship withthe charity Cancer Black Care. Through their visits into thecommunity, they have raised awareness of the long-termeffects of breast cancer.We have a shared goal: to help people get throughtreatment comfortably, recover from it, and achieve a goodquality of life beyond cancer. [3] Survivorship care creates theopportunity for clinical nurse specialists to review and reviseservices, and improve the support people receive.References[1] Bokhour, BG. Clark, JA. Inui, TS. Silliman, RA. Talcott, JA. Sexuality aftertreatment for early prostate cancer. Exploring the meanings of ‘erectiledysfunction’. Journal of General Internal Medicine. 2001. 16:10 p.649-655.[2] Fransson, P. Quality of life of members of Swedish prostate cancerpatient associations. Cancer Nursing. 2008. 31:1 p.23-31.[3] Macmillan Cancer Support. Cancer – not simply a question of life ordeath. 2009. Macmillan Cancer Support, London.Related informationSee this issue of Sharing good practice for more informationon commissioning services.Further informationClaire Taylor, Macmillan Associateand member of the Consequencesof Cancer Treatment Collaborative020 8869 5434gillian.taylor@kcl.ac.ukorLauren Wiggins, Macmillan UrologyCNS, North West London NHS020 8869 3680lauren.wiggins@nwlh.nhs.ukMacmillan Voice autumn 2010

16SupportThe CroakiesSarah Cost writes about supporting people with head and neck cancerThe National Cancer SurvivorshipInitiative’s [1] main aim is that by2012, cancer survivors get the careand support they need to lead ashealthy and active a life as possible,for as long as possible. The Croakiessupport group is proving to be a stepin the right direction.People with a head and neck cancermay have a variety of treatments, whichcan have devastating long-term sideeffects. Surgery can cause speechdysfunction, eating and swallowingdifficulties, and facial disfigurement.This can then affect the person’sconfidence and lead to social isolation.Chemo-radiation therapy also producesincapacitating side effects such asdysphagia (difficulty swallowing),xerostomia (dry mouth), trismus(inability to open mouth normally)and dental damage.Support groups help people withcancer feel less isolated and moreempowered, [2] and based on researchand my own experience, I identified theneed for a support group for any persondiagnosed with head and neck cancer inmy region.I collaborated with colleagues,the Bradford Cancer Support Centreand people affected by cancer. Weinvited all patients on my caseload to ameeting to explore their thoughts onsetting up a support group. With inputfrom the attendees, we were able tomove forward and The Croakies (namedby the group) was established quickly.Meetings are held once a monthand attendance can vary from 15–30plus. Some people may only attendonce, others for a period throughouttreatment, and some on a long-termbasis. The nurse specialist, dietitianand speech and language therapistare usually present.We have organised speakers fromhealth and other organisations basedon what the group members ask for.I update the group about developmentswithin the head and neck cancerservice and consult the group on anyservice changes or new developments,many of which have been successfuldue to the group’s help.The group continues to evolve andwe now have a committee who helporganise social outings and otheractivities. One of the members hasdesigned The Croakies website –thecroakies.org.uk and last year thegroup secured a Macmillan supportgroup grant for outings and food formeetings. The money has also beenput towards purchasing a laptop,projector and digital camera.We produce a quarterly newsletterand encourage group members tocontribute articles. The Croakiesnewsletter is offered to all new patientsduring their pre-treatment holisticassessment, when they’re also invitedto the support group, and again aftertreatment has finished.‘The Croakies is a revelationand a very importantleveller for us all’The Croakies are becoming recognisedat many different levels, not only forthe support and friendships they extendto each other and every new member,but as a reference group for a variety ofresearch projects, service developments,and as co-teachers in deliveringeducation programmes with staff.By learning how others cope withthe diagnosis and treatment sideeffects, people with cancer may remainhopeful. [3] Spouses and significantothers also gain from the experiencesof other family members.As one new member points out:‘The Croakies is a revelation and avery important leveller for us all.’Further informationSarah CostLead Macmillan Head and Neck Cancer Nurse SpecialistBradford Teaching Hospitals NHS Foundation TrustHead and Neck Cancer Services office, St Luke’sHospital, Little Horton Lane, Bradford BD5 0NA01274 365848sarah.cost@bradfordhospitals.nhs.ukReferences[1] Department of Health. The National CancerSurvivorship Initiative. 2010. Department ofHealth, London.[2] Clarke. L.K. Rehabilitation for the Head andNeck Cancer Patient. Oncology.1998. Vol 12:No.1.[3] Cella DF, Yellen SB. Cancer support groups.Cancer Practice. 1993, 1:56-61.Macmillan Voice autumn 2010

Support17Nursing advice just a phone call awayA telephone follow-up and support clinic has improvedaccess to lung cancer nurse specialistsThe caseload for lung cancer nurse specialists (LCNS)at Oxford Radcliffe Hospitals NHS Trust is well above thenational average. In 2009, there were 431 (approximately143–144 per LCNS/year) new patient referrals for threeLCNSs compared with a national average of 127 perLCNS/year. [1] The network standard is 90 referralsper LCNS/year. [2]Due to this high caseload the team realised that duringbusy medical clinics some patients were not seen. There canbe 5–6 doctors seeing patients, but there are only threeLCNSs – so we cannot see everyone. Although patients haveaccess to the LCNS telephone helpline, they may be reluctantto use this service. Many patients don’t phone for help evenwhen they know us and have our number, and despite ourencouragement, they often wait until their next appointment.This has resulted in some patients having limited access to aLCNS, which is recognised as a vital source of informationand support. [1]MethodsIn January 2009, a telephone follow-up and support servicewas established to ensure that all people with lung cancerin Oxford have regular access to a LCNS. An electronicappointment diary was set up to ensure regular patientcontact. All LCNSs could access the diary and arrangepatient appointments.The nurses agreed on the following minimum points ofcontact for all people with lung cancer referred to the service:• at diagnosis• 2–4 weeks after diagnosis• during treatment• four weeks after treatment• every three months during follow-up.All patients are booked into the diary at the above intervalsor more frequently if required, and telephone appointmentsare cancelled if the patient is reviewed in clinic or on the ward.FindingsThe number of telephone appointments in 2009 increasedfrom around 40–100 per month (see below).We analysed calls made over a two-week period to establishinterventions made as a result of the telephone appointments.Interaction following telephone appointments Total callsPsychological support 19Routine follow-up and support: no specific intervention 18Symptom management advice 14Liaison with district nurse/Macmillan nurse 10Disease related information/advice 9Bring forward clinic appointment 6Liaison with oncology 5Financial advice 4Treatment related information/advice 3Referral to palliative care 3Referral to GP 3Chasing of investigations/treatment 2Admission to hospital 2Bereavement support 2Informal feedback from patients and carers has been positive:One patient’s wife said: ‘I’m glad you have rung. I didn’tknow who to call – my husband is in a lot of pain.’ From thiscall, the team provided symptom management advice,liaison with oncology and Macmillan nurses, and an urgentscan was requested and follow-up brought forward.ConclusionsThe telephone follow-up and support clinic is an effectiveway of ensuring all people with lung cancer receive regularcontact with the LCNSs. It often leads to specialist interventions,including early intervention in response to problems, earlyreferral onto other specialist services, information giving,symptom management advice, financial advice andpsychological support.Despite the significant impact on the team’s time, we feelthat the new service greatly improves the quality and equityof care. It is viable in terms of current workload and thenurses would like to continue to offer the service. We are inthe process of gaining formal patient feedback on the clinic.160140120100806040200Number of calls made in 2009References[1] UK Lung Cancer Coalition. 2009.[2] Thames valley lung nurse forum minimum service standards. 2008.JanFebMarchAprilMayJuneJulyAugSeptOctNovFurther informationNicky Williams, Macmillan LungCancer Nurse SpecialistOxford Radcliffe Hospitals NHS TrustChest Unit, Churchill HospitalOld Road, HeadingtonOxford OX3 7LJ01865 226119Macmillan Voice autumn 2010

18LegaciesDealing with requests for willsDr Russ Hargreaves, Macmillan Cancer Information and SupportManager, says conversations about wills and legacies don’t haveto be awkwardPeople with cancer often want toknow that their loved ones areprovided for, wherever their cancerexperience leads them. But knowingwhat advice to give about writinga will can be tricky.Will writingWill-making packs available in stationersmay seem fine, especially if someone’swishes appear straightforward. Butthese packs can be inappropriate ifa family set-up is complicated, thedistribution of someone’s worldlypossessions is complex, or where legalprocedure isn’t followed.Many of the people I’ve spokento feel that solicitors’ charges are toohigh. However, a little investment earlyon can avoid a lot of issues later,and Macmillan always recommendsconsulting a solicitor. A professionallydrawn-up will is key to ensuring that itis legally binding and that loved oneswill be provided for as intended.Best practice means that we neverrecommend any one solicitor, andMacmillan doesn’t currently offer a willwriting scheme. However, the Legacyteam is happy to print and provide alist of local probate and will solicitorsto approach, who are registered withthe Law Society.Being clear about your wishes beforemeeting a solicitor may help minimisethe cost. The Legacy team has a simpleStep by step guide to help peopleanswer some of the important questions,like what they have to pass on andwho should they include in their will.Dr Russ Hargreaves: getting advice from the Macmillan Legacy teamhim over a cup of tea to talk throughhis concerns. Though Macmillan can’tgive legal advice, the meeting was ofcomfort to him.Witnessing a willOn a number of occasions I’ve beenasked to act as witness to people’swills. Having taken advice on this,I now politely decline getting involved,especially as anyone who could beseen as a benefactor should notwitness a will. Although not personallybenefitting, my centre may have done,so I suggest approaching others lessinvolved in the person’s welfare.team to advise the patient directly ona case-by-case basis.By asking the experts to talk toenquirers directly, I no longer worryabout giving misleading advice. Itmeans peace of mind for me, as wellas for patients.Related informationLegacy fundraising leaflets, postcards,and display posters are all availableto order free on be.macmillan.org.ukMacmillan’s guide to wills andlegacies, Family. Friends. Macmillan?,includes a Step by step guide, and isavailable from the Legacy team.Bedside mannerOne of my most recent requests camefrom a gentleman who was strugglingto find a solicitor who would visit himin hospital to discuss his will. Not allsolicitors will make ‘house calls’, buthe was keen to remember Macmillanin his will and I didn’t want to turnhim away without any support. I soughtpermission to pass on his detailsand referred him to the Legacy team.A Macmillan legacy adviser soon metExecutorshipWitnessing is different from Macmillanacting as executor to someone’s estateafter they’ve died, which we can oftenbe asked to do if the patient has nofamily or friends to rely on.Macmillan doesn’t have theresources to provide a dedicatedexecutorship service as some othercharities do, but we do have thenecessary legal status to be appointedas one. So again, I turn to the LegacyFurther informationLegacy teamMacmillan Cancer Support89 Albert EmbankmentLondon SE1 7UQ020 7840 4895leavealegacy@macmillan.org.ukwww.macmillan.org.uk/legaciesMacmillan Voice autumn 2010

Cancer medicines 19Prioritising cancermedicinesDeveloping a process for funding cancer drugsA new tool to rank and fund cancer treatments hasimproved the South East London Cancer Network’srecommendation process.In 2007, oncology and haemato-oncology consultants inthe network were asked to choose the medicines they wouldlike to see funded during 2008–2009. A small group thendeveloped a scoring tool to evaluate each selected drugor regimen based on the following factors:• magnitude of benefit (eg, survival)• quality of life• cost-effectiveness• alternative available treatments• strength of evidence.Comprehensive literature searches were conducted forall regimens and the results were taken to clinical scoringpanels. The group assigned a score to each of the regimens.The first four items were scored with a numerical value andthe strength of evidence was assigned a letter. The highestscore – 20A – reflecting good evidence to prove goodclinical benefit, the lowest score – 0A – indicating goodevidence to prove poor clinical benefit.The preliminary scores from the panels were sent to leadclinicians who were asked to consult with their colleaguesand confirm whether they agreed with the scoring or not.A seminar was then held with lead clinicians, commissioners,patients and carers. The scoring for each regimen wasdiscussed and agreed at this event. The final scoring led toa colour-coded priority list:• red – low scoring regimens• green – highest scoring regimens• amber – medium scoring regimens• blue – regimens where the patient experience is improvedor there are service delivery savings.A recommendation was then made for the regimens listed asgreen or blue to be funded once they had a positive LondonCancer New Drugs Group (LCNDG) review. The LCNDGhas made recommendations about the efficacy of cancermedicines to acute Trusts and primary care trusts (PCTs) inLondon since 2002. However, access to high-cost cancermedicines in England and Wales is largely governed by theNational Institute for Health and Clinical Excellence (NICE)and PCTs are required to fund medicines which have beenapproved by NICE.Of the 34 regimens considered, five were recommendedfor immediate funding as they had already received a positiverecommendation from the LCNDG. A further four regimenswere recommended for funding, should they receive a positiveLCNDG review during 2008–2009.The Pan-London process for 2009–2010In the summer of 2008, the London Cancer Networks Boardproposed to the London Commissioning Group that asimilar piece of work should be undertaken across Londonfor commissioning cancer drugs for 2009–2010. Themethodology was derived from the scoring tool used insouth east London in 2008–2009.The process was overseen by a steering group from thefive London cancer networks. A list of new cancer regimenswas compiled by reviewing the NICE work plan for cancerdrugs up until April 2010; the work plan of the LCNDG;and by asking cancer clinicians in the five networks torecommend new cancer treatment regimens they wished touse in 2009 and 2010. This produced a list of 94 regimens.Scoring panels were completed and a seminar includinglead cancer clinicians, commissioners and users took placein November 2008. In a similar manner to the year before,recommendations for funding were made and agreed.All recommendations to fund new treatments were dependenton a positive assessment by the LCNDG.Unfortunately the recommendations made for funding werenot universally taken up across London during 2009–2010.Despite this, the work has continued and the process hasbeen repeated for 2010–2011. In addition, four cancernetworks in south east England joined the five networks inLondon to participate in the process, thereby providing asingle process for the prioritisation of cancer medicinesfor around 13 million people living in greater London andsouth east England.Further informationJacky TurnerMacmillan Principal Pharmacist,Oncology and HaematologyGuy’s and St Thomas’NHS Foundation Trust, Lead forSouth East London Cancer Network4 th Floor Management OfficesBermonsey Wing, Guy’s HospitalGreat Maze Pond, London SE1 9RT020 7188 4240jacky.turner@gstt.nhs.ukMacmillan Voice autumn 2010

20Learning and developmentEmpowering professionalsto improve cancer servicesA group of information and support managers areimproving their services through reflective practice.Named PRACTISS, the group aim is to learn from theworkplace using Action Learning methods or ‘focusedconversation’ (listening, questioning, clarifying, reflectingback and helping). A key part of PRACTISS is theopportunity to reflect on work issues with peers.What is the Action Learning process?Presenters talk through an issue, problem or opportunity,expressing feelings as well as stating facts. The presentershould decide on what to bring to the Action Learning setusing the following guidance:• Is the challenge important, significant, complex and real?• Does anyone need to approve my choice of issue?• Am I certain I will be able to take action on the dilemma?• What is the time frame for making progress on the issue?• How would I feel if I were not able to resolve this problem?Supporters then ask questions to clarify the issue and helpthe presenter to think their problem through. The presenterthen agrees some action points to be worked on before thenext meeting. The actions should be realistic and focus onthe issue, problem or opportunity presented.Learning reviewThe whole group discusses what was learnt during thesession. Often newcomers are surprised at how thesupporters learn as well as the presenters in the process.Key skills honed during the PRACTISS sessions include:• listening• being objective• thinking about work• assessing what we hear• sitting with our confusion until it clears• mulling over the scenario presented• asking good questions/challenging/resisting giving advice• holding silences when silence is the best thing we can offer.An example of reflective practice – promotinga service and its identityAt a recent PRACTISS day, a cancer information and supportmanager presented a work-based issue for explorationwithin the group and came away with ideas of her ownon what to do next.‘When I do presentations to healthprofessionals about the centre, I struggleto state what it is we do that’s different.I expect from a business point of view I amtrying to find our “unique selling point”.‘If we could identify our distinct qualities,we could promote ourselves more effectively.If I could just identify that exclusiveness,it would help me to develop a plan on howwe could better fit into the cancer team.‘We have over 3,000 contacts a yearand our feedback from those contacts isexcellent, but how can we raise our profile?‘What do we really do that’s different andunique and how can we use that to raiseour profile?’Macmillan information and support managerFollowing on from the group discussion she is now planningto conduct an audit among her service users to look atexpectations and perceptions of the service.The session helped her identify what her service hadto offer and she was now going to see how that fitted withwhat service users needed and wanted.Positive feedbackGroup members have found the PRACTISS sessions veryuseful, commenting: ‘It allows me to feel part of a team.It fulfils clinical supervision for nurses, allows for problemsharing,and provides colleague support, which is importantin a job that is often isolating.’PRACTISS may not make perfect, but it can help andencourage professionals to improve cancer support services.Related informationMacmillan’s Promoting your service toolkit can be found atmacmillan.org.uk/learnzone‘As part of my remit I have to promoteand market our service. Despite all mybest efforts I still find that there is a realawareness gap around the Trust andprimary care about what we offer.Further informationTudor HumphreysMacmillan Information and SupportDevelopment ManagerCentral England01691 650219thumphreys@macmillan.org.ukMacmillan Voice autumn 2010

Palliative care21Building palliative careservices in TanzaniaPalliative care teaching workshop in a rural health centreMacmillan GP Adviser Dr Charles Campion-Smith and his wife Sue,a nurse, spent 14 weeks volunteering in the country’s Tanga regionThe aim of our visit was to helpintroduce palliative care to theKorogwe district. We were determinedto build local capacity by mentoringlocal health leaders in teaching,clinical assessment and treatment,bringing about improvements thatwould be sustained after our stay.Korogwe, with its 110-bed hospital,is the centre for a rural area with manyvillages scattered across the plain andin the Usambara mountains.The Palliative Care Toolkit, developedby Help the Hospices and the WorldPalliative Care Association, providedexcellent resources for our teaching.Its message, ‘there is never nothing youcan do’, was appropriate for an areawhere health resources are limited.There is a KiSwahili translation of thetool kit and this proved invaluable asmany of the healthcare workers hadlimited English.Presentations at the hospital’sinterprofessional clinical meetingsintroduced the concept of palliativecare and the need for this to embracephysical, social, psychological andspiritual aspects. Later we exploredpain assessment and the use of oralmorphine (previously not availablelocally) and other drugs and approachesfor managing symptoms.A core local palliative care teamwas formed with a charismatic nursecoordinator, a skilled clinical officer,the hospital pharmacist, an HIV/AIDSNGO representative and thenewly-appointed hospital matron.Many people in palliative care werebased in the community so we decidedto hold a series of meetings in localhealth centres and dispensaries.The teaching was delivered inKiSwahili by the local healthcareprofessionals with our support.Participants shared their views of thecare they would wish for themselves ora family member. Presentations aboutthe concept of palliative care andteamwork followed. Participants wereasked to reflect on the relevance of thisto their own working situation. Practicaltools for the assessment of pain weredemonstrated in role plays and we usedrole play to show non-verbal aspectsof good and poor communication.One hundred and sixty healthworkers participated in the six sessions.We also taught nursing students, alocal HIV/AIDS patient group and thelocal interfaith religious leaders group.This resulted in Muslim and Christianfaith leaders agreeing to work togetherto provide spiritual care.In addition to the formal teaching,a practical palliative care approachwas modelled by working alongsidethe nurses and clinical officers in thewards and clinics. A supply of oralmorphine was obtained and proceduresput in place to safely dispense andadminister it. A local palliative careregister was established; most patientsreceived only symptomatic care but a fewwere referred for palliative radiotherapy.With huge and competing demandsfor the time, attention and energy ofhealth workers in Tanzania, there wereconcerns that the work established mightnot continue. However, three monthsafter we returned to the UK, morepeople have been identified in need ofpalliative care and received appropriateassessment and care as a result.We came away impressed by theenthusiasm and passion to improveservices shown by the professionals weworked with. We were also struck bythe stoicism of local people whoseexpectations of the health service arevery modest. The welcome we receivedand friendships we made created aspecial experience for us both and helpedus focus on what is truly important incaring for people, wherever they are.Further informationDr Charles Campion-SmithMacmillan GP Adviser, GeneralPractitioner, Senior Advisor,School of Health and Social CareBournemouth University38 Prince of Wales RoadDorchester, Dorset DT1 1PW01305 251755charlescs@metronet.co.ukMacmillan Voice autumn 2010

22 Cancer treatmentPhotodynamic therapy explainedCarol Goodman, Clinical Nurse Specialist, provides an overviewof the treatment and its usesPhotodynamic therapy (PDT) combines non-toxicphotosensitising drugs and visible red wave-length light(or a laser) to kill cancer cells. It’s well-suited as apalliative treatment for some internal tumours that blockthe airway or gullet, providing symptomatic relief. It canbe used before or after chemotherapy and radiotherapy.PDT is particularly effective in treating early tumours andpre-cancerous lesions where chance of morbidity is low.This is because there is less tumour to treat or it mayprevent the pre-cancerous cells from becoming cancer.The drug can be applied topically as a cream on the skinand systemically via injection into a vein. The addition ofoxygen (in the atmosphere) produces a cytotoxic effect thatcauses cell death. Systemic PDT is used in:• advanced bronchial carcinoma for palliativesymptomatic relief• bronchial carcinoma in situ• cholangiocarcinoma (bile duct cancer)• fluorescence guided resection/surgery in brain(glioblastoma, pituitary adenoma)• high-grade dysplasia/Barrett’s oesophagus• head and neck cancers• dermatology.In dermatology, a topical photosensitising cream is applied tothe skin surface and then a red light or laser illuminates thelesion. It is very effective in actinic keratosis, superficial basalcell carcinoma, Bowen’s disease, and thin nodular basal cellcancer with good cosmetic effect.Systemic PDT is not suitable for every type of cancerbecause it relies on tumour accessibility, via endoscopy orsurgical resection, where a light can be focussed onto thetumour. Light transmission through tissue is also a limitingfactor because PDT is only effective to a depth of 1cm fromsurface. This restricts the use of PDT for larger or moreinvasive tumours.Side effectsSkin sensitivity is an easily controlled side effect of systemicPDT. Patients have to avoid very bright, direct indoor light ordirect sunlight for around 6–8 weeks. They can experiencesunburn if exposed to sunlight, but this is readily treated andeasily avoided with careful counselling on simple precautions.These are minor adverse effects compared to those associatedwith other forms of cancer therapy.PDT does not damage surrounding tissue and scarring isminimal. It can be repeated as often as necessary.The future of PDTThe future of PDT continues to be positive with its place in theincreasing choice of suitable treatment for specific conditions.There are trials in the UK, USA and Europe looking at theuse of PDT to treat pancreatic cancer, ureteric and bladdercancer. These tend to be in the early phases of the diseaseConsultation: discussing photodynamic therapyand have very strict inclusion criteria and are therefore notalways a viable option.‘The future of PDT continues to be positivewith its place in the increasing choice ofsuitable treatment for specific conditions’In the PDT centre in Dundee we have been investigating thetumour detecting possibilities of Photodynamic Detection (PD).This is when a tumour is made to glow or fluoresce in areasof non-tumour tissue. This happens when a PDT drugis administered but an ultraviolet light is shone on the tissue.This light does not treat the tissue but it makes cancer cellsglow so that they can be removed safely. This is particularlyuseful in the bladder, ureter and in the brain where we canidentify small spots of cancer cells left following surgicalresection of tumours.PDT can be accessed through the NHS if the trust offers itas a service, or health professionals can refer their patients toa centre in the UK.Related informationYou can find more information about PDT on our website atmacmillan.org.uk/cancerinformationFurther informationCarol R GoodmanClinical Nurse Specialist/UnitCo-ordinator and Macmillan CancerInformation Nurse SpecialistHonorary Clinical Researcher(University of Dundee)Scottish Photodynamic Therapy CentrePhotobiology Unit, Level 8, NinewellsHospital and Medical SchoolDundee DD1 9SYcgoodman@nhs.netMacmillan Voice autumn 2010

InformationLong-term and late effectsof cancer treatmentFor professionalsNHS Improvementwww.improvement.nhs.uk/cancerNHS Improvement is working to deliverand build sustainable improvementsacross cancer care, including late effects.Its publication Providing the evidenceto achieve improvements for patients,includes improvement stories from the10 children and young people test sites.National Cancer SurvivorshipInitiative (NCSI)www.ncsi.org.ukThe NCSI is working to get survivorsthe care and support they need. Sevenwork streams have been established,each focusing on either a stage inthe ‘survivorship pathway’ or across-cutting theme. A vision documentcan be downloaded from the websiteand more information on the NCSI’swork in late effects can be found atncsi.org.uk/consequences-ofcancer-treatmentScottish IntercollegiateGuidelines Network: Long-termfollow-up of survivors ofchildhood cancer, 2004www.sign.ac.uk/guidelines/fulltext/76/indexThis guideline is aimed at primary carestaff who look after cancer survivors, aswell as secondary care and long-termfollow-up clinic staff who manage thelong-term care of this group.The Children’s OncologyGroup: Long-Term Follow-UpGuidelines for Survivors ofChildhood, Adolescent,and Young Adult Cancers,Version 3.0 October 2008*www.survivorshipguidelines.orgThese guidelines providerecommendations for the screeningand management of late effects.The recommendations are based ona thorough literature review and thecollective clinical experience of thetask force members, panel of experts,and multidisciplinary review panel.Macmillan Cancer Support:It’s no life, 2009www.macmillan.org.uk/Documents/GetInvolved/Campaigns/Campaigns/itsnolife.pdfMacmillan outlines some simplemeasures that can, and should be,introduced to support cancer survivors.National Cancer Institute:Office of Cancer Survivorship*cancercontrol.cancer.gov/ocsThe Office of Cancer Survivorshipconducts and supports research whichexamines and addresses the long andshort-term physical, psychological,social, and economic effects of cancerand its treatment among paediatricand adult survivors of cancer and theirfamilies. Its website contains a wealthof information on cancer survivorshipfor both health professionals, patientsand the general public, includinginformation and research on the lateeffects of cancer treatment.Research studiesThere is a wide range of research onthe late effects of treatment in cancersurvivors. For a list of studies recentlypublished in medical and healthcarejournals, email Edward Wallace,Library and Information Specialist,at ewallace@macmillan.org.ukFor the publicCancer.Net: information on thelate effects of cancer treatment*www.cancer.net/patient/Survivorship/Late+EffectsCancer.Net brings the expertise andresources of the American Society ofClinical Oncology to people living withcancer and their carers. All content issubject to a formal peer-review process.LiveStrong: information on theafter-effects of cancer treatment*www.livestrong.org/Get-Help/Learn-About-Cancer/Cancer-Support-TopicsFounded by champion cyclist andcancer survivor, Lance Armstrong,DirectoryLiveStrong works to identify the issuesfaced by cancer survivors to improvethe quality of life for everyone livingwith cancer.23The National Coalition forCancer Survivorship (NCCS):Cancer Survival Toolkit*www.canceradvocacy.org/toolboxThe award-winning Cancer SurvivalToolbox is a free, self-learning audioprogramme developed by leadingcancer organisations to help peoplebetter meet and understand thechallenges of their illness. Theprogramme contains a set of basicskills to help navigate a diagnosis andspecial topics on key issues faced bypeople with cancer, including dealingwith the after-effects of treatment.CureSearch*www.curesearch.orgThe CureSearch website providesinformation on the late effects ofa range of childhood cancers.* An asterix indicates an American organisation;* therefore some of the information on thesewebsites may not apply to cancer treatmentsor healthcare systems in the UK.Upcoming eventsSeptember24 September 2010World’s Biggest Coffee Morningcoffee.macmillan.org.ukOctoberBreast Cancer Awareness Monthwww.breastcancercare.org.ukNovember4–5 November 2010Macmillan professionals event,Heathrowwww.macmillan.org.uk/learnzone5–6 November 2010Event for Macmillan InformationProfessionals, HeathrowEmail rcarlyle@macmillan.org.ukLung Cancer Awareness Monthwww.macmillan.org.uk/lungMacmillan Voice autumn 2010

24Macmillan resourceswe sharE ReSourcEsUpdated resourcesMen and cancerMAC5768_10This comprehensive booklet looksat cancer from a male perspective.It discusses the stages men go throughwhen they have cancer and providesinformation on specific cancersaffecting men.Cancer survivor's guideMAC5769_10This booklet provides emotional andpractical information for people whohave finished their cancer treatment.It also lists sources of furtherinformation and support.I’m still meMAC6706_10This booklet is for 12–21 year oldsliving with cancer. It answers some ofthe questions they may have and offerstips to cope. It also includes insightsfrom young people who have livedwith cancer.‘I will definitelyuse this resourcein my teaching’Professional reviewer for I’m still me.Macmillan resources catalogueMAC5782Look out for your updated copy of theresources catalogue in the post. It listsour full range of publications, includinginformation for people affected bycancer, professional developmentresources, and materials to promoteyour service.Managing the late effectsof breast cancer treatment(MAC12161) provides usefulinformation on some of the physicalchanges women may experiencefollowing treatment, for example achange in arm sensation or shoulderstrength, plus advice on how to copewith changes.Coping with body changesafter cancer treatmentMAC12525This booklet explains some of the waysin which your body can change aftercancer treatment. It covers the physicaland emotional effects, and suggestsways of dealing with them.Late effects of cancer treatment bookletsWe have two new booklets for peoplewho are experiencing long-term orlate effects of cancer treatment.Both titles cover the emotional andpractical issues people may facewhile living with long-term or lateeffects, and suggest other usefulorganisations that can providefurther support.Managing the late effectsof bowel cancer treatment(MAC12162) explains what changescan occur to bowel, bladder and sexualfunction following surgery, plus tips onmaking changes to your diet. The bookletincludes a food chart with advice onwhich foods to eat or avoid dependingon the late effects experienced.Visit be.macmillan.org.uk or call 0800 500 800 to order these resources for free.The views expressed in Macmillan Voice do not necessarily represent the views and policies of Macmillan Cancer Support. Any references to websites, books and journalsdo not necessarily imply endorsement from Macmillan Cancer Support. Although we do our best to make sure that all of the information in the magazine is accurate andup-to-date, neither we, nor any other party involved in producing the magazine will be liable for your use of its content.