1. Key Messages National Cancer Survivorship Initiative Central Hall, Westminster Monday 21 September 2009

2. National Cancer Survivorship Initiative Assessment and Care Planning Ciarán Devane Chair, Assessment and Care Planning Workstream

3. National Cancer Survivorship Initiative Two Million Survivors Two Million Survivors But how many have a care plan for survivorship?

4. National Cancer Survivorship Initiative Two Million Survivors But how many GPs are aware of the treatment that their patients have received and their survivorship care plan?

5. National Cancer Survivorship Initiative Two Million Survivors But how successfully does the GP Cancer Care review meet their needs?

6. National Cancer Survivorship Initiative Two Million Survivors But how does Follow Up care need to change to meet their needs?

7. National Cancer Survivorship Initiative Active and Advanced Disease Steven Wibberley Support, Active and Advanced Disease Workstream

8. National Cancer Survivorship Initiative What we’ve done Papers reviewing: Patterns of disease Developing ‘coping’ Patient-centredness in primary care Quality of health, living, being and dying End of life transitions Papers reviewing: Patterns of disease Developing ‘coping’ Patient-centredness in primary care Quality of health, living, being and dying End of life transitions Workshops on: What is meant by Active & Advanced Patient-centred support Primary care setting Transitions to EOLC Workshops on: What is meant by Active & Advanced Patient-centred support Primary care setting Transitions to EOLC

9. National Cancer Survivorship Initiative Priorities Well-being - living with and beyond cancer Coping, wellness, the ‘new normal’, relationships Getting back into the system on recurrence Self-referral, pathways from primary care, treatment by MDT, role of A&E Transition to End of Life Care Who decides and when, communications – early involvemnent of palliative care Ongoing assessment and care plans

10. National Cancer Survivorship Initiative Our ideal world would look like... Everyone has a personalised care plan Easy access to support and rehab services Prompt and sensitive pathways back into the system EoLC decisions are made together by patients and professionals

11. National Cancer Survivorship Initiative Long Term Consequences of Treatment Alastair Munro Professor of Radiation Oncology, University of Dundee

12. National Cancer Survivorship Initiative The Consequences of Cancer and its Treatment cause problems that currently affect 400,000 people have significant impact on daily life are both physical and psychological may be hard to identify, for both patients and professionals have significant economic impact are insufficiently appreciated and understood are secretly consuming resources can be managed efficiently and effectively –early intervention ⇒ prevention –later intervention ⇒ decreased impact provide an ideal test-bed for exploring self-care

13. National Cancer Survivorship Initiative How to improve matters: the decision space SCALESCALE SCALESCALE SEVERITY / COMPLEXITY

14. How to improve matters: the decision space SCALESCALESCALESCALE SCALESCALESCALESCALE SEVERITY / COMPLEXITY

15. National Cancer Survivorship Initiative How to improve matters: the way forward…? liaison with primary care and consumers record-linkage for identification of problems and syndromes (clinical informatics) systematic review of available knowledge developing new pathways and models of care – resolving the centralisation paradox –self-care and social networking –peripatetic experts? –one-off clinics? –the virtual MDT? economic analysis & spending to save devising and assessing new interventions these are complex issues - which is why we would appreciate your help with this afternoon’s workshop

16. National Cancer Survivorship Initiative Self Management Jessica Corner Chair, Self-Management Workstream

17. National Cancer Survivorship Initiative Self Management Support Workstream National Cancer Survivorship Initiative Where are we now? Jessica Corner Chair, Self-Management Workstream

18. Self Management Support Workstream National Cancer Survivorship Initiative Where are we now?

19. National Cancer Survivorship Initiative Self Management in cancer

20. National Cancer Survivorship Initiative Self Management support is what health services do to encourage cancer survivors make decisions that improve their health and clinical outcomes.(THF) Collaborative professional – patient relationship 1.Self management programmes 2.HCPs supporting self management in routine clinical practice 3.Aftercare services: Care co-ordinator/supporter Interactive technologies Internet/telephone 1.Self management programmes 2.HCPs supporting self management in routine clinical practice 3.Aftercare services: Care co-ordinator/supporter Interactive technologies Internet/telephone Self management Support +

21. National Cancer Survivorship Initiative Cancer survivorship and self management: Reviewing evidence Review of evidence base for self management support for cancer survivors (and drawing on work in long term conditions) February 2008 Fenlon and Foster 2008) Mapping – a snapshot of services identified as supporting self management (Mar – July 2008) Review of outcome measures for self management support in the context of cancer survivorship April 2009 (Davies 2009) Updated review of the evidence for follow-up support services (Ongoing) Review of the evidence for impact of specific lifestyle factors on recovery, progression and health related quality of life (ongoing)

22. National Cancer Survivorship Initiative Current Activity: Testing the framework First test site: –Test community Birmingham East and North PCT/HOE NHS Trust/Pan Birmingham Cancer Network Self management programme for patients and advanced development programme for professionals as part of a redesigned follow-up and support pathway for breast cancer patients at Good Hope Hospital. Scoping an additional two potential test sites. Working with other workstreams to develop and test approaches for survivors living with advanced disease, and for survivors experiencing long-term consequences of cancer and its treatment.

23. National Cancer Survivorship Initiative Work and Finance Barbara Wilson Chair, Work and Finance Workstream

24. National Cancer Survivorship Initiative Conference Work and finance workstream September 21 2009 Barbara Wilson, Workstream Chair

25. National Cancer Survivorship Initiative What we’re dealing with Basic provision of information, advice and support about work and financial support is not offered to cancer patients, their families or carers Vocational rehab services for those who want to return to work during or after cancer treatment are largely non existent Employers do not know how to support staff who have cancer

26. National Cancer Survivorship Initiative Progress to date We have reviewed the literature on work and cancer and identified key gaps We have developed a proposed model of vocational rehabilitation for cancer patients We have commissioned a study to explore whether DWP employment programmes meet the needs of cancer patients We are working closely with Macmillan’s Working Through Cancer pilot to develop and test a toolkit of resources for employers

27. National Cancer Survivorship Initiative Key areas where we’re seeking your views A new model of vocational rehabilitation Providing triage tools about work and financial matters from diagnosis onwards Strategy for increasing employers’ knowledge and awareness about how to support employees affected by cancer.

28. National Cancer Survivorship Initiative Children and Young People Carole Easton Chair, Children and Young People Workstream

29. National Cancer Survivorship Initiative Children and Young People Personalised targeted follow up Reduction in numbers lost to follow up Reduction in empty episodes Risk stratified Informed supported self management Evidence based Access to universal and specialised community services As close to home as possible Cost effective

30. National Cancer Survivorship Initiative Living as normally as possible for as long as possible Children and Young People

31. National Cancer Survivorship Initiative Having the best possible experience of living with and beyond cancer Children and Young People