1. Beyond Primary Treatment Professor Jane Maher Joint Chief Medical Officer Macmillan Cancer Support

3. Perspectives The user voice must be the driver....

4. Where do patients want us to go? Easy to get concerns heard Quick diagnosis Timely treatment Planned stages of care Supported rehabilitation and aftercare Support for carers Psychological support Better outcomes

6. By 2020 almost half of Britons will get cancer in their lifetime But 38% will not die from the disease

7. The number of people living with cancer will double by 2030

10. Long term conditions and multimorbidities http://www.macmillan.org.uk/Documents/AboutUs/Research/Researchandevaluationreports/Routes- from-diagnosis-report.pdf

11. 70,000 21% Do well Estimated prevalence Estimated incidence Poor health Intermediate 95,000 29% 127,000 38% 460,000 22% 1,170,000 56% 180,000 9% Three broad groups of cancers

12. ££ Treatment Aftercare Share of spend on Survivorship Phase Sub 1 year Survival Short Term Survival Short Term Recurrence Pre Existing Morbidities Medium Term Recurrence Living with Cancer Survivors with Chronic Conditions Complication Free Survival 0-1 Year Survival 1-5 Year Survival, No Complications 1-3 Year Survival, Cancer Complications 1-5 Year Survival, Non Cancer Complications 3-5 Year Survival, Cancer Complications Continued Survival, Cancer Complications Continued Survival, Non Cancer Complications Continued Survival, No Complications 9%41%57%58%56%46%39%22% Spend per Patient In Treatment and Survivorship Phases by Survivorship Outcome Pathway (£K) ( NCSI report 2012) Increasing length of survivorship Average Cost Across All Pathways: £13,006 15

13. Diagnosis & Treatment Recovery Early monitoring End of life care Progressive illness Later monitoring Gaps

14. 9 Different cancers have different shapes

15. NCSI report 2013 Classification of CoT Rare/ complex Several hundred, requiring highly specialist care Inter- mediate Tens of thousands, requiring proactive management by health services Common Risks affecting hundreds of thousands

16. Glaser et al 2013 BMJ Open Corner et al 2013 BMJ Open Dept of Health survivorship PROMS Urinary leakage and difficulty controlling bowels - rates exceeded general population Detectable impact on EQ5D - no less prevalent 5 years after treatment

17. => ~ 40,000 => ~ 50,000 24% urinary leakage 19% Poor bowel control 19% sexual difficulties Estimating prevalence of consequences for colorectal survivors, 2010 1yr 2yrs 5yrs 10yrs Time since diagnosis Source: Estimates using prevalence data and patient reported outcome measures, Maddams et al; Glaser et al.

18. Bowel dysfunction90,000 Bladder dysfunction 150,000 Sexual difficulties 350,000 Estimated number of people affected in UK, up to at least 10 yrs post diagnosis (all cancer types) Macmillan – ‘Throwing Light’

19. 48 gastroenterologists accepting referrals for PRD 16 gastroenterologists thought to be accepting referrals for PRD

20. Total Prevalence - now Total Prevalence - 2030 Diagnosis & Treatment Rehabilitation Early Monitoring Later Monitoring Progressive Illness End of Life Care (Year 1 Deaths)

22. Breast 70-80% Colorectal 50% Prostate 40-50 % Breast 70-80% Colorectal 50% Prostate 40-50 % http://www.evidence. nhs.uk/qipp

23. Partnership Each stage of management and care involves several partners Linkage is essential The key partner is the person with cancer

24. 13 http://www.nationalgalleries.org/collection/artists-a-z/C/3029/artist_name/Ken%20Currie/record_id/2875

26. Partnership Each stage of management and care involves several partners. Linkage is essential The key partner is the patient Improvement begins through looking at data and scrutinising it jointly.

28. A way of linking and analysing routinely collected data Maps the cancer journey from diagnosis through to death Describes health outcomes i.e. survival times, incidence, prevalence of cancer and non related cancer morbidities. Tells us how patients interact with the system e.g. interaction with health care services, when, how long and cost

29. 10 UK large scale whole systems change programmes 19 CCGs, 26 hospitals, over 30 LAs, 11 Health Boards, 5 H&SC trusts 330,000 cancer population

30. What will good look like? A system that is responsive to each type of cancer to the same level of quality A planned personal pathway Support for cancer patients and families Responsive and responsible for all elements of care