1. UNITED HOSPITALS NHS FOUNDATION TRUST 8 th ANNUAL CANCER CONFERENCE TUESDAY 20 OCTOBER 2009 NHS IMPROVEMENT – DIRECTOR – CANCER

2. The title for this section ………… “Survivorship: What is it? A Review of the National Cancer Survivorship Initiative”

3. INTRODUCTION NHS Improvement role as an organisation? My role? Plan today for this session?

5. What does the term survivorship mean? Anyone who is living with or beyond a cancer diagnosis ….. at Day 1 a patient becomes a survivor Source: The Cancer Reform Strategy, Chapter 5 & NCSI Vision Document

6. Background 1400/1600new cases/year – <16 yr olds 2800/3200new cases/year – 16-29 yr olds 78%5 year survival 26,000survivors 67%with chronic condition 30%with long term effects >50%lost to follow up

7. How did this term originate & what is the story so far? Key initiative of the Cancer Reform Strategy (December 2007) National Cancer Survivorship Initiative launched in September 2008

8. “The aim of the NCSI is, by 2012, to have taken the necessary steps to ensure that survivors get the care and support they need to lead as healthy and active a life as possible for as long as possible” Source: NCSI Vision working document – Sept 2009

9. What is the NCSI in practical terms? A 5-year national initiative In partnership with the DH, Macmillan & NHS Improvement NCSI has a National Steering Group chaired by Professor Mike Richards, National Clinical Lead and Ciaran Devane, CEO, Macmillan National Clinical Lead identified for the clinical workstreams, managerial lead and a nominated chairperson for each of the workstreams

10. 7 workstreams with a specific focus on: -Children & young people -Assessment & care planning -Long term consequences of cancer & treatment -Active & advanced disease -Workforce & finance -Self-management -Research

12. The Children & Young People Workstream National Clinical LeadAdam Glaser, Clinical Oncologist, Leeds Managerial LeadPatricia Morris, NHS Improvement Chair of CYP Steering GroupCarole Easton, formerly CEO CLIC Sargent Clinical Reference Group Gill LevittLondon Adam GlaserLeeds Prof Mike HawkinsBirmingham Louise HookerCAT/Southampton Beverley HorneLeeds Rod SkinnerNewcastle upon Tyne Elaine SugdenOxford Andy ToogoodBirmingham

13. Working relationships

14. Important elements of the CYP workstream: Safe Risk Stratification Evaluating patient experience Research & evidence Providing the evidence to validate the testing work

15. CYP Workstream - Four Principles Principle 1personalised, risk-stratified care Principle 2a shift to informed self-management Principle 3easy access to universal and, where necessary, specialised services appropriate to their needs Principle 4realistic/evidence-based/cost effective “models of care”

16. What are our objectives? Test out models and evaluate “models of care” that will inform future policy To improve clinical support and care To enhance efficiency To promote information sharing To ensure inclusive approach to living beyond cancer To provide robust evidence to convince wider NHS change is needed

17. Who is involved?

18. The test sites so far 17 test sites focusing on adult services 10 test sites focusing on children and young people 27 projects …… although working in parallel at this stage the pathway/transition needs to be smooth

20. Summary of progress so far -Patients’/carers’ involvement at national and local level -Clinical leadership -Identified what is important to survivors as basis for testing -Measures established -Care Plan launched in September -Safe Risk Stratification exercise ready to start -Review of clinical evidence underway

22. What are we aiming to achieve by March 2010? Summary of expected outcomes by March 2010: -Survivorship care plan framework tested/ready to roll out -Tangible/measurable outcomes for IT system work in Leeds -Case studies produced demonstrating progress from each test site -Emerging principles for new models of care -Identification of issues for cancer survivors in non-clinical areas in partnership with DH and charities -Evidence !!!

24. Some of the challenges Maintaining focus and momentum to make change happen Sticking to timeframes Ensuring we have the evidence to persuade Making sure that we build on existing good practice Effectively sharing information Engaging key individuals and groups that can support this initiative Ensuring we link with work in adult workstream

25. Early themes & learning emerging Care plans, shared widely, are basic requirement It is important to use technology to best effect when designing follow-up for patients Need to reduce meaningless follow-up appointments No one size fits all! A shift is needed in terms of the “language” used in relation to individuals living with and beyond cancer Evidence needs to be meaningful to the current health economy

26. Key messages so far Real commitment to make change happen Test sites are enthusiastic with a clear focus Successful change is never straightforward The results will be immensely rewarding This work has the ability to influence future services

28. Thank you very much for listening patricia.morris@improvement.nhs.uk

29. Now let us hear from Rachel Cox, Clinical Lead for the CYP Survivorship testing work in Bristol