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PUTTINGYOUNG PEOPLEFIRSTOUR STRATEGY TO 2024

LAKITA’SSTORYOur Strategy is called ‘Putting Young People First’so let’s hear from Lakita.“I thought that I was healthierthan ever, but I was constantlyshattered. I put that down tohow busy my life was then(January 2019) and I didn’tthink too much about it.The following month I wasteaching a class and I felt alump in my neck. It was sorandom, and I knew that Ineeded to get it checked out.The doctor told me that hethought it was a swollen gland.I was too embarrassed to goback, even when the lumpgot bigger. But eventually, Ihad a scan confirming I hadHodgkin’s lymphoma.I’d googled it and found it couldbe terminal, but my TeenageCancer Trust Nurse Hanna toldme never to google anythingand that it was really treatable.She was so chilled out, normaland calm that she made me feellike this was a normal situation.“Hanna calledmy uni for me,reassured themthat I could domy treatmentand continue mycourse and ironedeverything out. Itwas the best thingever to have herlooking outfor me.”Everyone from Teenage CancerTrust took the time to listen andremember things about me,especially my Youth SupportCo-ordinators Lori and Steve.I had gained five stone duringtreatment and lost all of myhair; I didn’t feel like myself. Butwhen I walked into an eventLori had organised, I realisedthat no-one there even noticed.I looked around and peoplelooked like me which made mefeel better.I went into remission inNovember just a few monthsbefore the country went intolockdown. I was gutted that Iwas just getting back onto myfeet and then the pandemicchanged everything.When I caught Covid, I wasworried about having toisolate and sitting with mythoughts for two weeksbecause my mental healthwas bad. I over analysed andover thought everything.Lori listened to me and setme up with some counsellingstraight away. Just knowing Ican call her makes thingsmuch less scary. I don’t knowwhat I would do without herand Steve.I can’t imagine having treatmentwithout Teenage Cancer Trustand they totally absolutelysmashed the support they havegiven during the pandemic.”Lakita, 20

WELCOMEEvery day, seven more youngpeople like Lakita hear the words‘you have cancer’. Right at thatmoment, everything changes – forthem, their family and for the lifethey had planned.Our job is to ensure they have thebest treatment, care and support sothat cancer doesn’t stop them fromliving their lives.They need our help because:CANCER CAN HITYOUNG PEOPLE HARD.It’s the leading cause of death from diseasein teenagers and young adults in the UK.CANCER IS DIFFERENTWHEN YOU’RE YOUNG.Young people are already going through acrucial time of change - physically, socially andemotionally - so going through cancer can havea dramatic impact on the rest of their lives.Teenage Cancer Trust kicked off in 1990 tochange the game for young people with cancer– and that’s exactly what we did. We fought forspecialist, age-appropriate care and support foryoung people with cancer and we’ve made somuch progress during that time.But right now we face a dangerous moment foryoung people with cancer. As we emerge from apandemic which has put our health service underunprecedented strain, we risk the gains of thelast 30 years being unwound. Not a priority. Notvisible. Not important.In fact, what the pandemic has shown us is aYOUNG PEOPLE WITH CANCER RISK disproportionate impact on young people, soBEING FORGOTTEN.we need to be thinking bigger. More accessibleThey can find themselves shunted into servicesdesigned for children or older adults that cannotmeet their age group’s unique needs.AND, TOO OFTEN, THEIR VOICESARE NOT HEARD.They don’t have a say on matters whichaffect them or enough influence on theirtreatment and care.services for every young person with cancer. Moreadvantage taken of new ways to communicateand reach vulnerable, isolated young people.Most of all, more listening to young people’s livedexperiences and thoughts about what they needto come through cancer stronger – and actingupon them.Everything we have done in the past as a charityhas been informed by young people’s diversevoices and experiences. Everything we do in thefuture must be done with young people, ratherthan simply for them.

This will see us asking some tough questions ofourselves, our partners and decision-makers.Have we asked the right questions of youngpeople and really listened to their answers? Havewe involved them in every way we can, at everystage of delivery? And have we given them astrong platform so the right people hear – and acton – what they have to say?Our aim is that every young person with cancerin the UK has the best treatment, care andsupport possible so cancer doesn’t stop themfrom living their lives.Our strategic objectivesto ensure we achievethis mean we will:FOCUS ON EQUITY,making our services accessible to all youngpeople with cancer, with no-one left behind.PROVIDE THE BESTCARE AND SUPPORTthrough consistent, sustainable, high-qualityfacilities in NHS hospitals and specialist staff tomeet young people’s unique needs.TACKLE THE ISOLATIONOF CANCERfor young people by providing the information,professional and peer-to-peer connectionsthey need.LEAD THE WAY,using our expertise, our reach, our partnershipsand our platforms to amplify the voices ofyoung people with cancer and ensure theirneeds are met.As we look to the future, healthcare systems andthe treatment of cancer will continue to evolveand improve. It will be critical that our supportfrom point of concern through treatment andinto life post-cancer is fit for the future.That’s why we are also setting a Big Goal: thatby 2040 young people with cancer in the UKwill have the best outcomes and quality of lifein the world.Why? Because they deserve nothing less.Cancer is a biological bully - young people getsome of the rarest and most aggressive cancersand although survival rates have improved, theystill lag behind some other European countries.That is not acceptable and it must change.We’re stepping up to play our part and we knowthat the network of clinicians, experts, partnersand supporters who back our work are standingfully beside us and the young people we support.Together we can, and will,make sure no young personfaces cancer alone.Kate CollinsChief Executive

OURVISIONA world where cancerdoesn’t stop young peoplefrom living their lives.we’reDETERMINEDwe’reUNITEDYOUNGEOPLEP we’reSPIRITEDwe’reKINDOURVALUESWe put youngpeople at theheart of whatwe do.OURPURPOSETo ensure every youngperson with cancer hasthe best treatment,care and support.OUR BIG GOALBy 2040, young people withcancer in the UK will have thebest outcomes and quality oflife in the world.

OUR STRATEGICOBJECTIVESTO 20241.2.FOCUS ON EQUITY,making our servicesaccessible to all youngpeople with cancer, withno-one left behind.PROVIDE THE BESTCARE AND SUPPORTthrough consistent,sustainable, high-qualityfacilities in NHS hospitalsand specialist staff tomeet young people’sunique needs.3.TACKLE THEISOLATIONOF CANCERfor young people byproviding the information,professional and peer-topeer connections they need.4.LEAD THE WAY,using our expertise, ourreach, our partnerships andour platforms to amplify thevoices of young people withcancer and ensure theirneeds are met.

“The first time Igot diagnosed Ididn’t have anysupport. It wasvery stressful forme to have to findout information onmy own.”Michelle, 20STRATEGICOBJECTIVE 1Focus on equity, making our servicesaccessible to all young people withcancer, with no-one left behind.BY 2024:BECAUSE OF THIS: We will be collecting and using data to ensurewe know who we reach through our servicesand who we currently don’t. We will use this data to track, understand andimprove the reach and impact of our services. We will understand the difference societalinequity has on the experience and outcomesof young people with cancer. We will be using this evidence to shape ourown services and advocate for improvementsto the healthcare system.Young people with cancer who currentlyreceive little or no age-appropriatesupport outside of their standard clinicalcare, will have an improved experiencethrough access to a suite of supportoffers from Teenage Cancer Trust.

“Conor [TeenageCancer TrustYouth Support Coordinator] makesbeing in hospitalbetter. Other thanmy mum andstepdad, he’s theone who supportsme the most.”Bobby, 13STRATEGICOBJECTIVE 2Provide the best care and support throughconsistent, sustainable, high-quality facilitiesin NHS hospitals and specialist staff to meetyoung people’s unique needs.BY 2024: We will continue to offer our current high-quality serviceprovision for young people in treatment and posttreatment for cancer. We will have a clear plan to ensure our units are fit for thefuture, adaptable to changing treatments, responding toyoung people’s emerging needs and meeting agreedquality standards. We will have scoped and planned our capital investment inNHS hospital units over the next five years, recognising andresponding to distinct local needs. We will have extended our network of nurses, youth workersand other specialist teenage and young adult cancer staff,through both direct funding and adoption. Our frontline staff will be better supported through anenhanced professional network and deeper connectionsto Teenage Cancer Trust, to make maximum use of theirinfluence and expertise.BECAUSEOF THIS:Every young person withcancer will be identified bythe local teenage and youngadult multi-disciplinary teamcoordinator, will have theopportunity to access specialistage-appropriate support andwill have their voice heard inshaping our future facilitiesand services.

“Being on the unit withother young peoplewas a good distraction.I’ve made lots of reallyclose friends and weare always there foreach other.”Tegan, 18STRATEGICOBJECTIVE 3Tackle the isolation of cancer for young peopleby providing the information, professional andpeer-to-peer connections they need.BY 2024:BECAUSE OF THIS: We will have a clear vision for, and beimplementing, a blended service provisionwhich is informed by young people’s needsduring and after treatment. We will be the definitive UK source ofclinically accurate, age-appropriateinformation for young people with cancerand their family & friends. We will have developed and be implementinga digital strategy for our service offers. We will have agreed our flagship posttreatment offers and piloted hybrid deliveryto reach as many young people as possible.Young people will know who to turn to - 24/7 to access information and support and more willbe able to benefit from our once-in-a-lifetimeflagship activities including Find Your Sense ofTumour and the Ultimate Backstage Experience.

“Being diagnosedwith cancer is alot to deal with. Itwould definitelyhelp young peopleif there was moremental healthsupport available.”Adam, 22STRATEGICOBJECTIVE 4Lead the way, using our expertise, our reach,our partnerships and our platforms to amplifythe voices of young people with cancer andensure their needs are met.BY 2024: We will be driving improvements in treatment and care,based on the experiences of young people and internationalbest practice, influencing policy where it matters most. We will be confidently and effectively advocating for adefined model of great treatment, care and support for allyoung people with cancer. We will be seen as the UK authority in teenage and youngadult cancer, by increasing the expert clinical leadership ofthe organisation. We will have taken strides on the cultural transformationrequired to become an organisation that is driven by data,evidence and insight.BECAUSEOF THIS:Young people with cancerwill be shaping developmentsin treatment and care, usingtheir experience to informfuture services.