13 June 2024

BLOG: When treatment ends our work begins - our North Star response

Today (Thursday 13 June 2024) sees the launch of the ground-breaking State of the System report and North Star response from four of the UK’s leading children’s and young people’s cancer charities. As one of those charities, our CEO, Frank Fletcher, explains what this means for the Ellen MacArthur Cancer Trust.

Head and shoulder shot of Ellen MacArthur Cancer Trust CEO, Frank Fletcher, smiling wearing a while shirt

Children and young people with cancer are being failed by the systems around them. That is the key finding from the State of the System report and North Star response, which the Ellen MacArthur Cancer Trust is privileged to be part of.

For the 20 years we have supported young people after cancer treatment, we have continued to see first-hand the long-term impact of a cancer diagnosis on a young person and their family, the inconsistencies and differences they experience during treatment, and the cliff edge in support that faces them after treatment ends.

The State of the System report confirms what all of us – Young Lives vs Cancer, Children’s Cancer and Leukaemia Group (CCLG), Teenage Cancer Trust and ourselves - have witnessed over many years of supporting young people and their families at every different step of their unique cancer journeys.

Now that we have the evidence and know where they are being let down, we can say ‘Enough, this can’t continue’, and, together, work to bring about seismic, systematic change that does better for young people and their families.

Our North Star

This is an ambitious vision informed by the State of the System report. It sets out how the system should support the needs and wellbeing of children, young people and their families at all stages of their experience. It is 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.

This change isn't going to happen overnight; the systems of care, information, and support around children and young people with cancer are complex. And we can’t do it alone. This is a society wide challenge that demands a collective approach. The whole system needs to step up to this challenge and be there to make a life-changing difference to the wellbeing of young people and their families.

When treatment ends our work begins

Stat card that says 36% of young people with cancer have higher anxiety than their peers

The State of the System report clearly shows the need for continued support years after treatment.

Although young people and families report better wellbeing and quality of life than during treatment, wellbeing is still below that of the general population, and a sharp decline in signposting to relevant support reinforces the feelings of isolation, anxiety and ‘being the only’ one experienced by young people while on treatment.

For us, this evidence, and the confirmation that wellbeing continues to be lower than the general population for some time, is the biggest thing to come out of the report.

Our sailing and outdoor adventures have a positive impact on mental wellbeing . So, if we can be visible to even more young people, and they can see we are open and accessible to them, we can make a transformative difference to the wellbeing of young people that the system is currently missing too.

The report also highlights a couple of other particularly interesting things for us.

Firstly, the focus on the need for support around life transitions and perhaps where the impact of late effects is being felt. The report found young people's cancer-related needs tended to increase five to six years after their treatment ended, and this certainly correlates to what we hear from many young people on our trips.

And secondly, we do a tiny bit of siblings’ work – with one trip for up to 30 siblings every year - it’s a small part of what we do. But it was really interesting to see more evidence in the report about the effect on, and gaps in support, for siblings.

What does it mean for us?

Later this year, we will start work on our next organisation strategy (from 2026). At the start of this work 18 months ago, we committed – along with the other three partner charities – to use the evidence presented in the report to help inform our strategy in the future.

I said then that we believed this research will help us all better understand the children and young person’s cancer care and support landscape we operate in, and that it was a huge honour for an organisation of our size to be invited to be part of such a landmark research project.

I am as excited now as I was then about what we have learned, and believe we now have the solid foundation and evidence needed to bring about real change, and the best possible outcomes, for young people and their families.