al Cancer Survivorship Ini Central Hall, Westminster Monday 21 September 2009 Children and Young People
Jan 19, 2016
National Cancer Survivorship Initiative
Central Hall, WestminsterMonday 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, WestminsterMonday 21 September 2009
Children and Young People
National Cancer Survivorship Initiative
Defining & Evaluating CYP Clinical Priorities
Adam GlaserNational Clinical Lead
Background• Numbers
– <16 years age 1400-1600 new cases/year (16-29 y age 2800-3200 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 Priorities Lead – 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-careAdam 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 NHSand health economy