Empowering Cancer Survivors: Redesigning Care and Support for a Healthier Tomorrow

1. Survivorship – why bother? Jane Maher NHS Improvement Lead (cancer) Chief Medical Officer, Macmillan cancer Support Chair NCSI Consequences of treatment work stream

2. Public view of cancer 2007 Incurable cancer Cured cancer

3. Cancer in the UK in 2008 There were 300,000 new cases of cancer in the UK in 2008. There were 150,000 cancer deaths in the UK in 2008. There were two million cancer survivors in the UK in 2008. Ten per cent of those over the age of 65 are cancer survivors – this figure is increasing by 3.2% each year.

4. Redesigning cancer care Diagnosis & treatment Recovery Monitoring Chronic and Progressive End of life care Managing transitions

5. Quantifying the invisible

6. Using available data and clinically led assumptions we estimate phases in the survivorship population Number of people Example Pathways

7. Recovery

8. The months after treatment Armes et al Journal clinical oncology 2009

9. Move More Daily Mail 08 August 2011 CIRC: 2,047,206

10. More lifestyle illnesses

11. More other chronic conditions osteoporosis & prostate cancer OR: 1.59 Nada Khan In press BJC *Adjusted for smoking and underweight Matched to non-cancer survivor controls on the basis of age, sex and practice

12. More chronic conditions Heart failure & breast cancer OR: 1.33 Nada Khan In press BJC *Adjusted for BMI, smoking Matched to non-cancer survivor controls on the basis of age, sex and practice

14. Monitoring

16. Literature review concerning current follow up after cancer “A poor evidence base and no consensus as to the intensity, duration, setting or type of follow up required for most common forms of cancer” Evidence to inform the Cancer Reform Strategy : The clinical effectiveness and cost effectiveness of follow up services after cancer treatment ; York Centre for reviews and dissemination October 2007 (report available on request)

17. Change from a “one size fits all” approach

18. Trusted individuals able to provide • Information • Access to tests • Access to expertise • Tools • Ongoing support Pre-planned tests, triage, access back to specialists via trusted person

19. NCSI testing communities …. Many of the changes required to improve care and support are already in use, others are being piloted. 38 pilot sites around the country, testing approaches to care and support Almost 80 centres involved In addition, 19 Health and Wellbeing clinics by Macmillan

20. Treatment consequences

21. New chronic conditions RT & CT related illnessese.g pelvic cancers 17,000/ year pelvic RT (UK) gynaecological, urological, colorectal, anal cancers 80,000 living after pelvic RT Bowel, urinary, sexual issues ?

22. Patients referred to a gastroenterologist a median of 2 years after pelvic RT (n =265) Rectal bleeding 171 Urgency 82 Frequency 80 Faecal leakage 79 Cancer 12% Unrelated 38% Most > 1 diagnosis Most could be helped Andreyev 2005

23. ‘My GP says for a long time he did not know what was going on…I thought I was making a fuss.’ ‘It’s the little things put together that wear us down’ ‘‘My oncologist asked how I was – how embarrassing to tell him.’

24. Endocrine • Growth /bone health • Cognitive/hear/sight • Cardiac dysfunction • Renal dysfunction • Infertility & sexuality • Bowels/bladder • Second tumours Gill Levitt 2008

25. Treatable incurable cancer

26. Cancer which has spread…

27. Cancer which has spread

28. Cancer which is incurable

29. Recurrent cancer & the need for early treatment with chemotherapy ? Early Delayed 1.00 0.75 Proportion surviving 0.50 0.25 0.00 0 6 12 18 24 30 36 42 48 54 60 Months since randomisation Ovarian cancer (OVO 5) Same Survival early cancer treatment or wait for symptoms (Rustin et al 2009)

30. Palliative care can improve survival as much as chemotherapy

31. End of Life

32. .

33. When does survivorship end? Health professionals poor at predicting prognosis in the last year of life Errors (more than double or less than half of actual survival) 30% of the time Two thirds of these errors are overoptimistic Glare P et al, A Systematic Review of Physicians Survival Predictions in Terminally Ill Cancer Patients, British Medical Journal 2003, 327, 195-8

35. Using IT GP research database Patient reported outcomes Hospital episode statistics Radiation episode statistics Chemo prescriptions Cancer registry

36. REACH - Website 3.4 million

37. Information ….

38. Survivorship Coverage

39. Building one team • The same story • Smooth hand offs • A sense of continuity • Personalised

40. Nurses & AHPs http://www.cancerconsequences.org/index.html 12 Post Doc nurses & AHPS taking the agenda forward. • To improve care for people living with the effects of cancer • Bridge the gap between research and practice • Individual and collective projects • Influencing UK research and policy agenda

41. Working through influential communities

42. ‘Some are born great, some become great, some have greatness thrust upon them.’ Malvolio, Twelfth Night, Shakespeare

43. A new cancer story …. Some cancers are born chronic . Some cancers become chronic Some survivors have chronic illness thrust upon them – through treatment. And some are not chronic at all.

44. Thank you