Developing the NCSI 2012 document: taking action to improve outcomes

1. Developing the NCSI 2012 document: taking action to improve outcomes

2. What I will cover • Why now? • Purpose • Process • Emerging thoughts • What we need from you

3. Why now? (1) • Cancer survivors needs are not being fully met • Poor survivorship: • Damages outcomes (mortality, quality of life, patient experience) • Costs money (preventable ill health, avoidable emergency admissions more expensive treatment and care) • We can’t do more of the same - from 1.7 million survivors now to 3 million in 2030...

4. Why now? (2) • To date focus has been: • Researching – extent, needs, impact • Developing – communities of interest • Testing – new approaches • Evaluating – feasibility, effectiveness • But not many patients have benefitted in the ‘real world’... • Some interventions are ‘rollout ready’ - now we need to deliver better survivorship support at scale

5. 2012 should be a step change Implement Engagement with clinicians & commissioners Innovate Investigate 20092015 Time We are here

6. If we go no further, we’ve failed

7. Our challenge: Turn promising examples into routine practice

8. Moving on from uncertainty

9. Good survivorship will...

10. Developing the document Pilots and test sites NCSI workstreams Next steps document Feedback from patients Feedback from clinicians NCSI Symposium Research NDP workshops

11. Testing our thinking • NCSI project templates • ‘Dragon’s Den’ • NDP workshops • Macmillan clinical advisory board • Today

12. Taking action

14. Support from point of diagnosis • Survivorship starts from the point of diagnosis – work discussions start now • Patient experience and quality of life are linked: taking action to improve one will benefit the other • Critical role of CNSs / AHPs • Peer Review? • National Cancer Patient Experience Survey? • Information prescriptions?

15. Promoting recovery • The package (assessment and care planning, treatment summary, cancer care review and health and wellbeing clinics) • Prehabilitation • ‘Rehabilitation prescriptions’? • Tariffs for phases of care? Best practice tariffs? CQUINs? • Peer Review?

16. Sustaining recovery • If physical activity was a drug, its efficacy would mean it was considered a ‘wonder drug’ • Follow-up: tailored and risk stratified • Efficiencies in follow-up need to be matched by investments in other areas of the survivorship pathway – but whose responsibility is this? • Cancer care review template? • National Cancer Patient Experience Survey? • Best practice tariff?

17. Managing the consequences of treatment • Most patients will need to manage some consequences of their treatment • The nature of consequences will vary – ‘the Maher classification’ • Failure to manage the consequences costs money and lives • Breast Radiotherapy Injury Rehabilitation Service (BRIRS) • READ codes • CQUIN for use of PROMs

18. Managing the consequences of treatment – key principles • Prevent or minimise consequences where possible • Inform patients of potential consequences when these are known and document these in treatment summaries • Identify groups at increased risk of late effects (long term follow-up of patients in trials; recording through national datasets) • Monitor at risk patients consistently • Respond where a new risk is identified, utilising PROMs and health service datasets and informing patients • Provide appropriate services for patients suffering from the consequences of treatment

19. Active and recurrent disease • Key principles for survivorship apply • CNSs and palliative care really matter • Addressing weaknesses in the intelligence is a priority • What does the metastatic MDT look like? • What are the true costs of active and recurrent disease? • Which outcomes matter most to patients?

21. Your task • Have we identified the right issues? • How do we get the whole system to prioritise survivorship support? • Will the levers work? • What are we missing?

22. It’s as easy as x, y, z...