Ensuring that the voices of those with lived experience are not only heard, but shape, inform and meaningfully contribute to our work is paramount to the values of CCLG. Your lived experience can change the future for children and young people with cancer, by supporting the design and delivery of research, informing the development and evaluation of services, and influencing policy, government plans and other key decision makers across the system.
By people with lived experience, we mean those who have knowledge acquired through direct, first-hand and personal experience – in this context, those who have received a diagnosis of cancer as a child or young person, or are a parent, carer or family member of a child or young person who has received a cancer diagnosis.
You may also hear lived experience involvement and engagement referred to as ‘advocacy’, ‘PPIE’ (patient and public involvement and engagement), ‘consumer representation’ and other terms.
There are many ways you can use your lived experience to support us build brighter futures for children and young people with cancer.
Engage: The Children & Young People’s Cancer Lived Experience Platform
Engage: The Children & Young People’s Cancer Lived Experience Platform is a collaborative initiative from CCLG: The Children & Young People’s Cancer Association (CCLG) and Solving Kids’ Cancer UK (SKC) – two leading charities united by a shared commitment to improving outcomes for children and young people affected by cancer and their families.
-
Use your lived experience to help others
Help shape research, policy, clinical practice and service development to ensure that future children and young people diagnosed with cancer, and their families, benefit from insights and research grounded in real world experience.
-
A platform for everyone
The platform isn't limited to those from CCLG and Solving Kids’ Cancer - we're building it for the whole children and young people’s cancer sector. There will be opportunities to get involved in work with other charities, researchers, hospital teams, pharmaceutical companies, and more.
-
Serving the research and clinical community
Engage helps professionals understand the value and importance of patient engagement. If you're a researcher, health professional, or charity staff member who would like to promote an opportunity for lived-experience involvement through Engage, we'd love for you to get involved.
Find out more about Engage
Whether you're a person with lived experience of children and young people's cancer, or you're a researcher who could use lived experience to inform your research, get involved with Engage.
Other ways to get involved
Your voice can help shape the future of childhood cancer research, care and policy. If you'd like to find out more about supporting our work, we'd love to hear from you. Please get in touch at info@cclg.org.uk
Join the CCLG PPI in research group
Help shape future research at all stages of the research cycle, from developing new ideas, to overseeing delivery, sharing findings and reviewing applications for funding, ensuring projects we fund are meaningful and relevant to children and young people with cancer.
Join our health information review panel
Our Information Review Panel brings together parents, carers, survivors and multi-professional experts to help ensure our information remains accurate, relevant, useful and easy to understand for children, young people and families affected by cancer.
Share your story
Stories can support our media work, raising the profile of the charity. It can inspire more supporters to get involved with our work, which can help to fund research into better, kinder treatments. Many people also find it a great source of support to read about families who have gone through similar experiences.
Future lived experience development
We’re currently developing a ‘lived experience’ strategy, which we’ll publish to this page soon. It sets out how we plan to ensure that lived experience informs all of our work for and with children and young people with cancer, and our commitment to ensuring diversity in lived experience involvement. If you’d like to get involved, please contact info@cclg.org.uk or join the Engage community.