Visit our websiteAll the great news stories and featuresfrom this issue are now available atmacmillan.org.uk/macvoice If you’d liketo stop getting a paper copy of Mac Voice,please email macvoice@macmillan.org.ukWriters wantedMac Voice is for you. You can write aboutthe issues that matter to you and share yourknowledge with others. You don’t haveto be an experienced writer to get involved –simply email rcotter@macmillan.org.ukor call 020 7091 2219ContributorsWendy Anderson • Kathy Blythe • Sarah BurtonMichelle Binnion • David Cook • Penny CoyleRhian Davies • Kathy Gorman • SarahHenderson • Geoff Heyes • Trish HughesClifford Jones • Erica Lucero • Karen ParkinsonClaire Savage • Andrew Wilcock • Ruth WilsonEditorial boardCharlotte Argyle, Carers <strong>Support</strong> ManagerKathy Blythe, <strong>Macmillan</strong> DevelopmentManager • Alison Foster, <strong>Macmillan</strong> ClinicalNurse Manager & Lead Clinician for SpecialistPalliative Care • Alison Hill, Nurse Director,South West London <strong>Cancer</strong> Network • BeverlyHurst, <strong>Macmillan</strong> Gynaecology/Oncology CNSSusan Llewelyn, <strong>Macmillan</strong> Information FacilitatorYvonne McKenna, <strong>Macmillan</strong> Lead <strong>Cancer</strong> NurseBarry McVeigh, <strong>Macmillan</strong> DevelopmentManager • Heather Nicklin, <strong>Macmillan</strong> SpecialistPalliative Care Social Worker • Terry Priestman,Consultant Clinical Oncologist • Debbie Provan,<strong>Macmillan</strong> Project Lead Dietitian • Helen Tyler,Therapies Service Manager • Tracy Williams,Senior Information Development NurseEditorial teamRosie Cotter • Genevieve Osei-KuffuorGraham Pembrey • Sajjad ShahContentsNews4–11 New evidence to support multidisciplinary teams;how <strong>Macmillan</strong> can support you during a post orservice change; and changes to <strong>Macmillan</strong>'s onlineinformation for teenagers and young peopleQ&A12–13 Wendy Anderson, <strong>Macmillan</strong> Nurse ConsultantChemotherapy, talks about her role and developingbetter chemotherapy servicesFeatures14 Seamless support15 Piloting a nurse-led survivorship clinic16–17 Setting international standards18 Shaping local services19 Awareness training20–21 Primary care development22 Early diagnosisSharing good practice pull-out<strong>Support</strong>ing nursing homes to deliver quality careIn focus: Rarer cancers23–27 Features about accessing treatment, penile cancer,germ cell tumours of the ovary and Hodgkinlymphoma in young peopleThe views expressed in Mac Voice do not necessarilyrepresent the views and policies of <strong>Macmillan</strong> <strong>Cancer</strong><strong>Support</strong>. Any references to websites, books andjournals do not necessarily imply endorsement from<strong>Macmillan</strong> <strong>Cancer</strong> <strong>Support</strong>. Although we do ourbest to make sure that all of the information in themagazine is accurate and up-to-date, neither we, norany other party involved in producing the magazinewill be liable for your use of its content.Resources28 New and updated information from <strong>Macmillan</strong>© <strong>Macmillan</strong> <strong>Cancer</strong> <strong>Support</strong>, registered charity inEngland and Wales (261017), Scotland (SC039907)and the Isle of Man (604). MAC5772_09_12Printed using sustainable material. Please recycle.2 Mac Voice Autumn 2012
EditorialRarer cancersA cancer may be defined as ‘rarer’ if it affects anunusual site in the body, or because the cancer itselfis of an unusual type or requires special treatment. [1]Further informationGeoff Heyes, Senior PublicAffairs Officer<strong>Macmillan</strong> <strong>Cancer</strong> <strong>Support</strong>020 7840 4843gheyes@macmillan.org.ukReference1Rarer <strong>Cancer</strong>sFoundation. What isa rarer cancer? www.rarercancers.org.uk/index.php?option=com_content&view=article&id=1&Itemid=2(accessed 5 July 2012).<strong>Download</strong>Improving access? Reporton the implementation ofthe <strong>Cancer</strong> Drugs Fundand the development of avalue-based pricing system.December 2011. <strong>Macmillan</strong><strong>Cancer</strong> <strong>Support</strong>.Visit macmillan.org.uk/improvingaccessPeople with rarer cancers often feelisolated. They may have never heardof their illness or not know anyone elsewith it. Health professionals may alsolack knowledge about their type ofcancer. This issue of Mac Voice focuseson treatment and support for peoplewith rarer cancers.One of the key difficulties peoplewith rarer cancers face is securingaccess to drugs and treatment.Because t<strong>here</strong> will only be a smallnumber of people who need aparticular drug, they are oftenexpensive to develop and produce.As a result, the drugs are often notapproved for NHS funding.The <strong>Cancer</strong> Drugs Fund waslaunched in England last yearfollowing a successful campaign by<strong>Macmillan</strong>. The fund was created toimprove access to cancer drugs thataren’t routinely available on the NHS.However, the fund comes to an endin 2014. <strong>Macmillan</strong> believes it hasprovided some important lessons forthe future, which are set out in t<strong>here</strong>port, Improving access?. Crucially,we argue that the drugs currentlyavailable through the fund mustcontinue to be funded by the NHSonce it ends.The Westminster government isin the process of developing a new‘value-based’ system for the pricingof drugs. <strong>Macmillan</strong> is working withthe Department of Health on what‘value’ means for people with cancer,but it's essential that any new systemimproves access to drugs for peoplewith rarer cancers.For more about access to treatmentin the UK, visit macmillan.org.uk/accesstotreatmentLooking for an articlefrom last year?You can now accessissues of MacVoice from spring2011 onwards atmacmillan.org.uk/macvoicewww.macmillan.org.uk/macvoice 3