Back in 2022, we set out to develop a solid evidence base, to fully understand the needs and experiences of children and young people with cancer and to identify what change needs to look like.

Together with our charity partners, we commissioned Dartington Service Design Lab, to carry out an in-depth programme of research. They surveyed over 1500 children, young people and families, who spoke openly about the barriers they faced, the things that made life even harder before, during and after treatment and the impact that those barriers had on their wellbeing.

Two years on and we now have a robust and in-depth set of findings; a State of the System report. It’s an evidence base which we can learn from, be guided by and use to make change happen. And it’s not just for us. It can be used across the entire system, to inform change and inspire innovation.

The State of the System report highlights the immense impact cancer has on wellbeing, the numerous gaps in support and exactly where the system is failing young cancer patients.

From the research we now have our North Star vision.

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 is more than a vision for children and young people with cancer, it’s a vision that’s been built by them too. It’s big and ambitious. And it’s a journey that we need to go on collectively.