UNITED HOSPITALS NHS FOUNDATION TRUST

1. UNITED HOSPITALS NHS FOUNDATION TRUST 8th 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

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 Lead Adam Glaser, Clinical Oncologist, Leeds Managerial Lead Patricia Morris, NHS Improvement Chair of CYP Steering Group Carole Easton, formerly CEO CLIC Sargent Clinical Reference Group Gill Levitt London Adam Glaser Leeds Prof Mike Hawkins Birmingham Louise Hooker CAT/Southampton Beverley Horne Leeds Rod Skinner Newcastle upon Tyne Elaine Sugden Oxford Andy Toogood Birmingham

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 1 personalised, risk-stratified care Principle 2 a shift to informed self-management Principle 3 easy access to universal and, where necessary, specialised services appropriate to their needs Principle 4 realistic/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