National Cancer Survivorship Initiative Central Hall, Westminster Monday 21 September 2009 Children and Young People

Two projects led by CLIC Sargent For children & young people

Young people’s feedback: Education Health & fitness Employment support A personal perspective: Raina Background

Focus on family, friends & school Appreciative enquiry model External evaluation Impact of cancer on a child’s world 7-13 consultation

Audit of children’s policy Any gaps? Three documents: – Policy map – Influencing proposal – Summary for young people Policy project manager at CLIC Sargent Policy project

National Cancer Survivorship Initiative Central Hall, Westminster Monday 21 September 2009 Children and Young People

National Cancer Survivorship Initiative Defining & Evaluating CYP Clinical Priorities Adam Glaser National Clinical Lead

Defining & Evaluating CYP Clinical Priorities Adam Glaser National Clinical Lead

Background Numbers –<16 years age new cases/year (16-29 y age new cases/year) –78% 5 year survival –26,000 survivors diagnosed aged under 15 y Existing structure pre NCSI –National network of treatment/follow-up centres –CCLG Late effects Working Group –National Best Practice Statement & Guidance –NICE IOG mandates life long support and surveillance –>50% long term survivors lost to follow-up –British Childhood Cancer Survivor Study n >16,000

Clinical Reference Group Priorities Support full re-integration & function Prevention, early identification and appropriate management of late complications Empowerment and education Engagement with service users –Active involvement of survivors/carers by test communities

Clinical PrioritiesLead – responsibility Survivor care plans, to include treatment summaries and information resources Rod Skinner Models of care  Shared with secondary care  Shared with primary care  Nurse led clinics  Ensuring continuity of follow up of survivors  Risk stratification Elaine Sugden/Andy Toogood Elaine Sudgen, Andy Toogood Bev Horne/Louise Hooker Andy Toogood Adam Glaser/Mike Hawkins Transition to adult services Louise Hooker Late effects of radiotherapy/chemotherapy/surgery, to include fertility Gill Levitt/Adam Glaser IT support for after-care Adam Glaser CYP Clinical Priorities

Who is involved in the testing ?

Outcomes Projected “estimates” of benefits Quality innovations to –Improve clinical support and care –Enhance efficiency and productivity –Ensure adequate information sharing –Promote inclusion of all living beyond cancer Evidence in a format useful to the NHS and health economy