Bridging the gap for teenagers and young adults with cancer

With the COVID-19 pandemic delaying many of its plans, Teenagers and Young Adults with Cancer (TYAC) has revisited its ambitious 2020-2025 strategic plan. Ashley Ball-Gamble, CEO of TYAC and CCLG, explains more.

Something we often say when talking about children with cancer is that “children are not just small adults!”. What we mean is that cancer in children is different to cancer in adults – they get different types of cancer, need different treatments and need specialist care in expert hospitals. Even where a cancer occurs in all age groups – such as acute lymphoblastic leukaemia (ALL) – it’s treated differently to children than it is in adults, and has different outcomes.

It might not surprise you, then, that we believe that teenagers and young adults (aged 13-24) with cancer also have specific needs – both psychological and physical – that differ from children and older adults. Teenagers and Young Adults with Cancer, or TYAC, is a sister organisation to Children’s Cancer and Leukaemia Group (CCLG), founded in 2004. Like CCLG, TYAC started out as a small, like-minded group of professionals that recognised the specific needs of this age group. Over the last 17 years, TYAC’s grown alongside the field of TYA cancer care, which has seen the development of specialist principal treatment centres (PTCs) for 16-24 year olds with cancer, and the TYA multi-disciplinary teams first recognised in the 2005 NICE Improving Outcomes Guidance.

In 2018, TYAC merged with CCLG, to provide a stable platform for the further growth and development of TYAC as the country’s only professional membership body of its kind. It would benefit from CCLG’s infrastructure, size and reach to support its membership and enable them to direct their energies to TYAC's mission – which is working to achieve the best possible care for teenagers and young adults with cancer. Since its inception, TYAC has been supported financially by Young Lives vs Cancer (formerly CLIC Sargent) and Teenage Cancer Trust, and we’re grateful for their continued support.

In 2019, TYAC launched a new strategy, clearly setting out four key goals:

1. To build a membership community for all professionals working with TYA cancer patients
2. To be a strong professional voice for teenagers and young adults with cancer and their need for specialist care
3. To educate for impact, to improve the cancer experience for young patients
4. To lead and fund world-class research dedicated to teenage and young adult cancers

These goals represented an ambitious expansion of activities for TYAC, responding to key gaps in TYA cancer where TYAC and CCLG’s combined expertise could provide more impact for young people with cancer.

And then, along came COVID-19. With many of our planned activities curtailed by the impact of the pandemic, as well as the huge impact on our members working on the frontline of the NHS, TYAC’s plans had to be put on hold. Now, some two years on, we’ve been working hard behind the scenes preparing to relaunch TYAC, now more ambitious than ever, to ensure all young people with cancer receive the best possible treatment and care…

Information and support

We have launched a new-look TYAC website, featuring a wealth of comprehensive health information for young people with cancer, covering a wide range of areas. This includes help and advice for patients, friends and family, and expert information on different types of cancer, living with cancer and specialist resources and support.

We’re also working to increase the amount of information resources, including good practice guidance and educational content, for our professional members. Ultimately, this will help to improve the care given to young cancer patients.

Research

In 2019, the TYA Cancer Research Priority Setting Partnership (PSP) published the top 10 research priorities in teenage and young adult cancer, as agreed by young patients and survivors, their families, and the professionals treating and caring for them. This pivotal work suggested that future research should focus on holistic and psychosocial care delivery as well as traditional treatment research. In response, TYAC has formed a Research Advisory Group and published its first research strategy, setting out our ambition to become a major funder of specialist research, while focusing on the top 10 priorities identified by the PSP. 

We want to bridge the gap between the children’s and adult oncology research worlds. TYAC is taking the lead on building a new focus on research that’s dedicated to the specific needs of TYA cancer treatment and care, to improve outcomes for young people with cancer.

We’re also committing to supporting and developing theTYA research community, through our ‘TYAC Research Academy’. This will offer training and mentoring to early career researchers looking to build a career in TYA cancer research, ensuring that research in this field is sustainable.

#FundTheAnswers

To enable these important areas of research to be undertaken, and to answer the questions identified by the PSP, we have developed a new, dedicated fundraising campaign for TYAC called #FundTheAnswers.

There isn’t a major national funder of solely teenage and young adult cancer research. That’s where TYAC comes in! CCLG has had a huge impact on children’s cancer research directly and through our partnerships, and we’re in a position to do the same for TYA cancer research through TYAC. 

We know the research questions, but research takes money – and that’s why we’re asking our supporters to help us #FundTheAnswers. Whether running, cycling, skydiving or taking part in one of our special events, there’s lots of ways to get involved, while at the same time having fun.

Find out more about how we can #FundTheAnswers together