1. Consequences of cancer & its treatment Jane Maher NHS Improvement Lead (cancer) Chief Medical Officer, Macmillan Cancer Support Chair, NCSI Consequences of treatment work stream

2. Public view of cancer Incurable cancer Cured cancer

3. Integrated care over time Diagnosis and treatment RehabilitationMonitoringEnd of life care Chronic and Progressive care: Cancer &/or consequences transitions

4. 4 Adding the numbers

5. Using available data and clinically-led assumptions we estimate phases in the survivorship population Number of peopleExample Pathways

6. Using this model we can estimate pathways in different geographies (breast, colorectal and lung) E.g. Northern Ireland Pathways

7. Breast cancer care pathway Colorectal cancer Lung cancer Estimating numbers for Northern Ireland 7

8. End of primary treatment date Date of treatment related illness Date of recurrence Type of treatment Date of DS1500 offer What else do we need to know? Risk stratification Staging 8

9. 9 Recovery

11. The little things altogether……. It’s the little things all together that get us down Penny Vicary Open Letter to my oncologist Clinical Oncology 2007 19:746- 747

12. More lifestyle illnesses

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

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

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

16. *Adjusted for BMI, smoking Matched to non-cancer survivor controls on the basis of age, sex and practice OR: 1.33 More chronic conditions Heart failure & breast cancer Nada Khan In press BJC Investment in 1,100 Benefit 7,900 people

17. 17 Monitoring

18. 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 )

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

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

22. 22 New illnesses

23. Survivors of childhood cancer In UK >30,000 survivors of childhood cancer Increasing by > 1,000/yr 50% are now adults 60% have significant treatment related late consequences which may develop into chronic diseases 23% multiple conditions No plateau has been reached at 30yrs.

24. New chronic conditions RT & CT related illnesses e.g. pelvic cancers 12 - 17,000/ year pelvic RT (UK) gynaecological, urological, colorectal, anal cancers 80,000 living after pelvic RT Bowel, urinary, sexual issues 6-8,000 new cases radiation related illness ?

25. LENT SOMA scores for bladder symptoms LENT SOMA scores for bowel symptoms Symptom Score Time after treatment (months) Worse Better Davidson et al 2008 Months/years after pelvic RT

26. Analysis of symptom clusters Before RT / End of RT / Up to 3 years after RT clusters associated with the highest problem levels usually include faecal urgency & rectal pain.

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

28. Information “prescriptions”

29. 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

30. Guidelines to be published in GUT November 2011

31. Building one team

32. Diagnosis:Date of Diagnosis:Organ/Staging Local/Distant Summary of Treatment and relevant dates:Treatment Aim: Possible treatment toxicities and / or late effects:Advise entry onto primary care palliative or supportive care register Yes / No DS 1500 application completed Yes/No Prescription Charge exemption arranged Yes/No Alert Symptoms that require referral back to specialist team:Contacts for re referrals or queries: In Hours: Out of hours: Secondary Care Ongoing Management Plan: (tests, appointments etc). Other service referrals made: (delete as nec) District Nurse AHP Social Worker Dietician Clinical Nurse Specialist Psychologist Benefits/Advice Service Other Required GP actions in addition to GP Cancer Care Review (e.g. ongoing medication, osteoporosis and cardiac screening) Summary of information given to the patient about their cancer and future progress: Additional information including issues relating to lifestyle and support needs: Treatment Summary Insert GP Contact Details Insert Trust Logo and Address Dear Dr X Re: Add in patient name, address, date of birth and record number Your patient has now completed their initial treatment for cancer and a summary of their diagnosis, treatment and ongoing management plan are outlined below. The patient has a copy of this summary.

33. Working with professionals

35. 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 12 Post Doc nurses & AHPS taking the agenda forward. Nurses & AHPs http://www.cancerconsequences.org/index.html

36. Raising awareness

37. Integrated care over time Diagnosis and treatment RehabilitationMonitoringEnd of life care Chronic and Progressive care: Cancer &/or consequences transitions