Dr Janet Williamson National Director NHS Improvement March 2011

1. NHS Improvement National ConferenceCancer Survivorship – Living with and Beyond Cancer“ACHIEVING EQUITABLE and CONTEMPORARY SERVICES for all Cancer SURVIVORS” Dr Janet Williamson National Director NHS Improvement March 2011

2. National Survivorship: Context • Cancer Reform Strategy (2007) launched Sept 2008 • “Our best chance lies in focusing on improving quality and productivity, linked together by innovation driving sustained improvements across the system.” Sir David Nicholson, (The Year, May 2009) • A partnership between Department of Health, Macmillan Cancer Support and NHS Improvement with the aim of improving services for those living with and beyond cancer • No decision about me without me?

3. By 2030 it is estimated that there could be 3.4 million cancer survivors in England from an estimated 1.7 million (2008)

4. Top 3 perceived reasons for follow up • Monitor early complications following treatment • To detect recurrence early • To detect late effects of treatment Patients prefer the follow up they have experienced, e.g. face to face, telephone, by GP, but are open to what they have not experienced if informed and given choice NHS Improvement 2007 Survey, 3000 respondents

5. What Did Patients Want? • Rapid access to an appropriate practitioner when they have problems • Good quality information, moving from illness to wellness • Consistent advice from healthcare practitioners • The opportunity to be responsible for aspects of care wherein they can exercise choice and control, if able to do so • Identity: not a cancer patient, not a survivor just ME NHS Improvement 2007 Survey

6. The NHS ……The Gap • Patients are generally managed “medically” as a tumour group – within “routine” follow up for a prescribed period within the hospital setting • Minimal use of clinical risk stratification, or assessment of individual patient need • Assessment often based on individual practitioner skill and experience • Limited written care plans • Patients have little choice or control

7. The unmet need… Physical and clinical needs Psychological and emotional needs Information needs Knowing the service 24/7 What’s the follow up anyway? Picker Experience of Care Survey 2009 1248 respondents

8. “The National Cancer Survivorship Initiative will consider a range of approaches to survivorship care and how these can best be tailored to meet individual patients’ needs” CRS December 2007

9. “The patient experience is the most powerful lever & will be used for service improvement!” Lord Darzi

10. Patient Perspective “Help us, to help you, to help us” I need to feel the system is there for me, the information is consistent, and I have access to the right professional when I need it The Voice of Our Customers All children and young people who are cancer survivors should expect the same, high quality standard of individualised care irrespective of where and when they are treated.. Alex

11. Defining Standardised Pathways….. • 2009 -11-Testing elements of care including treatment summary and assessment ad care planning • 2010-2012 Testing Risk Stratified Pathways of care and Support • CYP 4 Levels of care/Model of care • Consultant led • Nurse led • Shared care • Supported self management • Adults 2-3 levels of care depending on tumour type

13. What Has Been Achieved in 3 Years? • Challenge to traditional model • Move from concept to proof of principle on stratified pathways making a shift from traditional medical (illness) to where appropriate a supported self managed model (wellness) • Economic benefits to patients from not attending outpatient clinics, and reduced costs from released slots but needs some investment; cost of support package (care coordination, remote monitoring) • Needs a shift from buying activity to commissioning a bundle of care that supports self managed care

15. Impact of New Pathways Focused on Self Management (Adult) • 80% of breast patients suitable a year from treatment • 46% of colorectal patients suitable 6-18 months following treatment • Around 30% of prostate patients when condition stable • No lung patients really suitable for self management • Stratified pathways led to an 6-8% reduction in unplanned admissions • Reduced costs for service and patients through reduced OP attendance

16. The Challenge of Spread . . .

17. 2012 /13 CYP • Spreading the work to all 14 CYP Centres • Potentially testing and defining a transition model Adult • Further testing to finalise proof of concept: Extending to 9 sites covering 27 tumour projects (Breast colorectal and prostate) remote monitoring in place • If successful with begin National roll out Autumn 2013 Wider • Long term conditions • The patient voice

18. Credits and Thanks You’s • Our patient representatives and their carers both Nationally and locally who have supported the changes in practice • Our Clinical Leads and Advisors • The test sites who have achieved such a lot in difficult circumstances • Partnership with charities and other health care professionals