Children's Cancer and Leukaemia Group (CCLG) has come together with Young Lives vs Cancer, Ellen MacArthur Cancer Trust and Teenage Cancer Trust to ensure children and young people with cancer get the care and support they deserve.
The needs of those children and young people, as well as their families, are unique, complex and often aren’t fully understood or even recognised by the systems around them. This means they’re facing barriers to support, moments when voices aren’t heard, or times when they and their families simply aren’t getting the vital help they need.
This needs to change. And it needs to change now.
As four of the UK’s leading children’s and young people’s cancer charities, we’re all working towards making this happen. However, we’ve known for a while that to achieve what we want to achieve, we will need to work together with a collective approach.
So, in 2022, we joined forces. We collectively commissioned Dartington Service Design Lab to undertake groundbreaking, in-depth research that would identify gaps in the systems that support children and young people diagnosed with cancer and help us understand what needs to happen to create lasting, meaningful change for them.
During the course of their research, the Dartington team spoke to parents, carers and siblings whose lives have been deeply affected by children’s and young people’s cancer to hear their experiences, as well as to the professionals who provide care for them and people who finished treatment up to 10 years ago. This process resulted in a robust set of findings, that we’re now able to share. Published today (13 June), as the State of the System report, the insight it provides will act as the foundations for us to build upon. In a watershed moment for our sector, our four charities have used it to launch the North Star, a vision informed by the report that sets out what needs to be accomplished.
A big and ambitious 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.
Our four organisations will be using the North Star and research findings to shape their future strategic thinking. All with different remits and roles to play. All working towards a better future for children and young people with cancer.
What we’ll be working towards
We know what we have to address, both individually and collectively, to build that future and we can now begin assessing how we do so. Here at CCLG, we’ll be using our influence, expertise and unique position as the UK and Ireland’s professional association for those involved in treatment and care to help deliver a better cancer pathway for children and young people. We’re committed to evolving how we can support the education and professional development of all our members and how we can bring together colleagues in different specialties to share ideas and knowledge. Ultimately, this will only benefit those under their care.
We know from the report that many children, young people and their families struggle to understand their diagnosis – with almost half saying they needed more support to do so. That’s why we, as the experts in childhood cancer, will continue to expand our award-winning information resources to help them make sense of the new, confusing and often isolating world of cancer treatment. Importantly, we’ll also develop our information provision in a way that’s accessible and digestible for all.
Another key theme to emerge from the report is that of delayed diagnosis. Many participants described making multiple visits to the GP before they were taken seriously, with signs and symptoms attributed to other causes. Our early diagnosis work will be key to changing this. Our Child Cancer Smart project seeks to reduce the time it takes to diagnose cancer in children, teenagers and young adults by raising awareness of its signs and symptoms among primary healthcare professionals. We’ll develop resources for them to utilise that will help to speed up the referral process and, in turn, diagnosis.
Collaboration is pivotal to progress
As we move forward, it’s important to acknowledge that real change – holistic, impactful and lasting change - will take time. But allied with our partners, combining our individual areas of strengths and expertise, we will make it happen.
With four organisations now benefitting from one clear vision, the North Star is a huge force for good. One that will break down barriers and illuminate the path toward a better future. One that ensures children and young people with cancer and their families feel supported and empowered from the point of diagnosis onward.
So far, other charities and NHS colleagues have responded positively to our new evidence base, indicating that there’s will and investment to reach the North Star together and have the transformational impact that we want it to have. Collaboration is crucial to strengthening the systems of support around children and young people with cancer and their families. With it, they’ll not only get what they need, but what they deserve.