The survivorship vision

1. The survivorship vision Mike Richards & Ciarán Devane Co-Chairs, NCSI

2. National Cancer Survivorship Initiative Ciarán Devane Chief Executive, Macmillan Cancer Support

3. National Cancer Survivorship Initiative – September 2009 • Seven workstreams: • Assessment and Care Planning • Active and Advanced Disease • Consequences of Treatment • Self Management • Work and Finance • Children and Young People • Research • 27 test communities • Cross cutting themes – patient information, workforce, commissioning, equalities • Involving service users, carers, clinicians, service commissioners, researchers, charities … National Cancer Survivorship Initiative

4. Picker Experience of Care Questionnaire – overview • Interim results from the questionnaire highlight significant numbers of respondents who: • lacked an up to date care plan • have a named key worker who they can contact if they have a concern • knew who to contact during office hours; although a larger proportion did not know who to contact out of hours • were able to access specialist advice when they needed it all or most of the time • would have liked more information and advice on the following: • physical aspects of living with and after cancer (e.g. side effects or signs of recurrence) • diet and exercise • psychological or emotional aspects of living with and after cancer National Cancer Survivorship Initiative

5. Review of current practice • professional led, medical long term follow up model • variation in practice, including use of assessment tools and care plans. • majority of patients have no choice or control over follow up assessment or planning • variation in service provision including in access to emotional and psychological support • some areas of innovation e.g. risk stratified follow up for patients after colorectal cancer in Taunton National Cancer Survivorship Initiative

6. We have six expectations of the National Cancer Survivorship Initiative A document describing our vision of the care of people living with or beyond cancer A supporting implementation plan A set of models of care which we have piloted and we know work Acceptance of ‘survivorship’ as a priority for patients Translation of the vision into action at a local level, using approaches similar to those tested A community of interested people who will continue to lead this agenda National Cancer Survivorship Initiative 6

7. NCSI Looking ahead • 2008/09 • Early work by workstreams, testing work underway • 2009/10 • Principles from workstreams, results of testing work, developing commissioning guidance • 2010/11 • Commissioning guidance available for 2011/12 planning National Cancer Survivorship Initiative

8. The survivorship vision Mike Richards National Cancer Director

9. Five Shifts? • Attitudes • Information • Care planning • Support • Measurement Are these right? What’s missing? Please feedback – www.ncsi.org.uk National Cancer Survivorship Initiative

10. The QIPP Challenge QUALITY INNOVATION PREVENTION PRODUCTIVITY National Cancer Survivorship Initiative