Advocacy is at the heart of our mission of achieving health justice for all children, adolescents, young adults with cancer and survivors (CAYAS), across Ireland.
We strive to ensure that more children survive childhood cancer and thrive as adults through early diagnosis, access to less toxic treatments and a holistic approach to support for survivors and their families, who are dealing with the long-term effects.
We are dedicated to raising public awareness of the many issues affecting CAYAS, their families and communities and influencing policy at national level to ensure equal access to the most up to date treatment protocols, research and supportive services.
At national level we contribute to decision making by the National Cancer Control Programme (NCCP), charged with implementing the National Cancer Strategy 2017-2026, through active membership of the:
- CAYAS Clinical Leads Committee
- CAYAS Shared Care Services Committee
- Survivorship Committee
Achievements of the NCCP to date include:
- The roll out of a Fertility Preservation Service for adolescents.
- Appointment of key personnel to develop a dedicated adolescent and young adult cancer service at cancer centres.
- Protocol on an end-of-treatment summary for all children on transition to adult services.
- Work in the areas of education and psycho-social supports.
Childhood Cancer Ireland is a member of the Irish Cancer Society Childhood Advisory Group on Child and Adolescent Cancers.
The Advisory Group comprises of organisations that represent the voices and needs of children and adolescents with cancer, their siblings and parents, as well as survivors of childhood and adolescent cancers.
We also sit on the following committees:
- Department of Health Cancer Patient Advisory Committee – representing the interests of CAYAS and survivors.
- Children in Hospital Ireland Network of Children’s illness groups.
Patient Involvement and Engagement
One of the areas of advocacy we focus on is patient involvement and engagement. It is essential that patients are encouraged and facilitated to use their experiences of cancer to help shape research. Likewise, it is important that knowledge and information about research is shared with patient advocates and the public through engagement.
Some examples of our work in this area are:
- Collaboration with Irish clinicians to ensure access to innovative therapies for children in Ireland. This resulted in the approval of Dinutuximab Beta for use and reimbursement in Ireland for high-risk neuroblastoma.
- Collaboration internationally with major charities and research organisations to ensure continued focus on the needs of children with cancer during and post Brexit.
- Representing parents of children with cancer at the Joint Action Group on Rare Cancers, which is the framework for EU stakeholders and policy makers to work together to support EU citizens with rare cancers.
- Working, on several occasions, with Precision Oncology Ireland and Cancer Trials Ireland to foster patient engagement through participation in presentation panels and media events.
We are a member of Childhood Cancer International and Childhood Cancer International Europe.
In 2016, Childhood Cancer Ireland co-hosted the Childhood Cancer International and Survivors thread of the International Society of Paediatric Oncology (SIOP) Conference, which was held in Dublin that year.
Childhood Cancer Ireland contributes to research, surveys and studies and submitted a detailed Submission to the EU Beating Cancer Plan.
How can you get involved?
As parents of children, adolescents and young adults with cancer, we advocate for them and for ourselves, all of the time. It can be exhausting! Childhood Cancer Ireland is dedicated to being the voice of children and young people with cancer in Ireland. Let us take on some of the mental load for you.
If you come across and issue that is having an impact on children, adolescents and young adults with cancer, or survivors of childhood cancer, please contact us. We can advise you on how to proceed, or help to advocate on your behalf.