13 June 2024

CEOs Statement: We’re pulling together to build a better future

Young Lives vs Cancer, Children's Cancer and Leukaemia Group (CCLG), Ellen MacArthur Cancer Trust and Teenage Cancer Trust are joining forces to ensure children and young people with cancer get the care and support they deserve. Read the statement from the CEOs of the four charities - Frank Fletcher (Ellen MacArthur Cancer Trust), Rachel Kirby-Rider (Young Lives vs Cancer), Kate Collins (Teenage Cancer Trust) and Ashley Ball-Gamble (CCLG).

Children and young people with cancer need better support. We’re pulling together to build a better future. The systems that seek to support children and young people with cancer and their families are failing them.

From having to make multiple visits to the GP just to be taken seriously, to signs and symptoms being written off as growing pains and financial help that barely touches the sides. The theme of inadequate support continues through to post-treatment too, where many young people and families are left with poor wellbeing and ongoing unmet needs.

As four of the UK’s leading children’s and young people’s cancer charities, we hear all too often of the unacceptable barriers to support and distressing difficulties that young people and families are forced to face on top of their cancer.

Having cancer at a young age is not the same as having cancer as an adult. It comes at a time of huge physical, emotional and social change; treatment often comes with significant long-term side-effects, and it can only be treated in specific centres across the country (and so also comes with unmanageable travel costs and the emotional toll of being far from home too). The list goes on.

These differences mean children and young people with cancer have unique and often complex needs. But these needs aren’t fully understood or even acknowledged by the system around them. And so, there are gaps. Areas where there are barriers to support, moments when voices aren’t heard and times when they and their families just aren’t getting the vital help they need.

As individual charities, we’ve each campaigned to make change happen for young cancer patients, and we’ve worked relentlessly to raise their voices and experiences to make sure they get the support and care they deserve. But children and young people with cancer need more. They need radical, systemic change, more accountability and a stronger force on their side. And they need it now.

So, we’ve joined forces. Four charities, one ambitious vision, all for children and young people with cancer.

We know change isn't going to happen overnight. It’s a society-wide challenge and that requires a collective approach - putting children and young people with cancer and their wellbeing at the centre and scrutinising the complex systems of care, information, and support that operate around them.

Back in 2022, we jointly commissioned Dartington Service Design Lab to carry out an in-depth body of research to help us understand exactly what change should look like and build a solid evidence base. The result? A robust and unique set of findings which we can build an informed and focused vision upon.

The research confirms much we already knew: the ruthless and immense impact cancer has on the wellbeing of children, young people and their families, not only during cancer treatment, but also many years later; and the numerous gaps in support.

The report tells us that young people, parents and carers struggle to understand their diagnosis – with almost half of them saying they needed more support in understanding it. Meanwhile, anxiety levels for young people who were treated for cancer are 36% higher than the population at large, not just at the point of diagnosis or during treatment, but even after remission. And this remains true more than six years after treatment.

It can’t continue. It’s time to be bold; to embark on an entire change initiative and redefine the future for children and young people with cancer.

From the research we now have our North Star - a vision where:

Every child and young person facing cancer receives care that’s tailored to them. They feel informed and in control, and along with their families can make knowledgeable decisions about their care and future. They feel empowered every step of the way, facing no gaps in support or barriers to access. They have everything they need from the beginning of their cancer journey, during treatment and for as long as they need it afterwards.

All four of our organisations have different roles to play in reaching this big and ambitious vision – we’ll use our individual strengths and expertise to carve our own areas of change and responsibilities.

Together, we’re a force to be reckoned with. But we still can’t do it alone. So far, the response from other charities and NHS colleagues to our report shows there is will and investment to reach the North Star together. And in terms of our supporters, we know they will step up to the challenge and be there to make a life-changing difference for children and young people with cancer. As a sector, as a system, as a society, we have the power to make it happen. Children and young people with cancer are counting on us.

Read the research report in full here - State of the System Report and North Star - and find out more about the many ways in which children and young people with cancer and their families are being impacted by the failures in the systems that surround them.