Two leading childhood cancer charities – CCLG: The Children & Young People’s Cancer Association and Solving Kids’ Cancer UK (SKC) – have joined forces to launch Engage: The Children & Young People’s Cancer Lived Experience Platform, a first of its kind national initiative designed to ensure that the voices of children, young people and families affected by cancer drive meaningful change across the sector.
The new platform will train and support people with lived experience – including patients, survivors, parents, carers and siblings – to become confident, informed advocates who can shape research, influence policy, and improve services across the UK.
Addressing a critical gap
While the value of lived experience is increasingly recognised across children and young people’s cancer research and care, involvement opportunities are fragmented, inconsistent and under resourced. Engage aims to change this by creating a sustainable, structured model that empowers diverse voices and supports those who take part.
Ashley Ball-Gamble, Chief Executive of CCLG, said: “Engage represents a major step forward for the children and young people’s cancer community.
“By creating a national platform that is structured, supported and inclusive, we are ensuring that the insights of children, young people and families directly shape the research, services and policies that affect them. Their voices are essential to driving meaningful, lasting change, and Engage will help make that a reality.”
Gail Jackson, Chief Executive of SKC, said: “Parents, survivors and families have always been powerful advocates for change, and Engage builds on that strength by giving people the training, support and opportunities they need to influence the system at every level.
“This platform brings together the best of parent-led advocacy and professional expertise to create something truly transformative. Our goal is simple: to make sure that every decision made in in the children and young people’s cancer landscape - from research priorities to clinical practice - is grounded in real lived experience.”
Helping professionals put lived experience at the heart of their work
As a lived experience representative in CCLG’s Patient and Public Involvement (PPI) Group, Lisa Radcliffe, from Cambridgeshire, is keen to see how Engage supports other parents to get involved in research and policy. She began supporting CCLG’s research after her son, George, died in October 2023 just one year after being diagnosed with rhabdomyosarcoma
Lisa said: “We want to be heard and seen, and to know that our contributions to research are valued. Many of us with lived experiences want to help make a difference. It gives hope when, for some of us, hope was taken away by cancer.
“Through the PPI work, I’ve been able to see all of the mechanisms that go into good quality research. Learning, training and support in this role has increased my confidence and enabled me to play a part that I never realised would be so valuable.
“Being part of the PPI groups has been empowering. I’ve felt listened to, that my voice is important and, in some way, this has helped me through the grieving process too.”
She added: “Without drive and coordinated, collaborative approaches, childhood cancer research could continue in isolation with little advancement.
“Organisations with joint goals and priorities must work together with lived experiences to share expertise and experience to drive progress together. This new platform is an exciting advancement in PPI work becoming more than a tick box on an application and moving towards partnership that is valued and focused.
“As parents and carers, we know childhood cancer in our homes, during mealtimes, at the park, at bedtime, during the night and away from the clinical setting. This platform will enable lived experience to be considered in all aspects of research, in order to seek more effective treatments.”
Scott Crowther, dad to Ben who sadly died in 2019 a year after being diagnosed with cancer aged six, has also been involved in shaping CCLG's research for several years.
Scott said: "Being involved with research, as a parent of child with cancer, was an absolute no brainer. It's essential that all research is developed with our children in mind.
“I'm proud to give back in this way and would encourage anyone else to get involved. You don't need to be a scientist or any sort of expert. Just an experience that nobody else wants. And we have that."
Through Engage, people will be able to contribute in a wide range of ways, and can choose how much or how little they wish to be involved. These include:
- shaping research design, delivery and evaluation
- reviewing research grant applications
- joining strategic committees such as the UK3CR Children’s Cancer Clinical Research Groups
- supporting service development, including reviewing health information
- contributing to policy and advocacy work
- sharing personal stories to raise awareness of key issues
Helping professionals put lived experience at the heart of their work
Engage brings together SKCUK's extensive experience in parent-led advocacy with CCLG's professional membership and networks. Together, this expertise will help support the research and clinical community through:
- training and resources on ethical, effective involvement of people with lived experience
- providing a matching service connecting researchers with trained advocate
How Engage works
Anyone with lived experience of children and young people’s cancer can sign up now to join Engage. The platform includes an online community platform, offering a secure, community‑driven space similar to a closed social media network. Members will be able to access training, connect with peers, and explore involvement opportunities across the sector.
Support for the children and young people's cancer sector
Engage is being built for the entire children and young people’s cancer community. As the platform grows, opportunities will extend beyond CCLG and SKC to include collaborations with other charities, researchers, hospital teams and organisations.
People with lived experience of childhood or young person cancer – including family members – are invited to sign up today.
Researchers, charities, organisations and pharmaceutical companies seeking lived‑experience representatives for research, service development or policy work can find more information on our Engage for researchers page.
