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