No ё line Young

1. Noёline Young National Cancer Survivorship Initiative Project Manager

2. From Cancer Plan to Cancer Reform • The Cancer Plan recognised that each year 200,000 people in England were diagnosed with cancer • Cancer is therefore one of the biggest causes of death in the country.

3. The Cancer Reform Strategy (2007) defined further plans for improving NHS cancer care • A key recommendation was to create the “National Cancer Survivorship Initiative” (NCSI) with the aim of ”improving the services and support available for cancer survivors”.

4. Two Million Reasons (2008) 2 million survivors of cancer in the UK (1.6 million people in England) • 1 in 10 people over the age of 65 living with the disease.

5. The National Cancer Survivorship Initiative (NCSI) was established 2008 to consider a range of approaches to survivorship care, tailored to meet individual patient’s needs • There were 7 workstreams including Assessment and Care Planning

6. The Assessment, Care Planning (ACP) and immediate post treatment workstream Four defined areas (subgroups) of work: • Assessment and Care Planning • Treatment Record Summary • Cancer Care Review • Immediate Post Treatment

7. Why Assess Patients Needs? “I feel like my whole life has been thrown up into the air, chopped in a million pieces and is now on the floor in front of me. How do I make sense of this? Where do I start?”    in Jane Rankin (2008)

8. Why Assess Patients Needs? • Patients have reported that current routine follow-up appointments do not not meet their needs • Evidence suggests psychological, social, spiritual, financial and information needs that cancer survivors may have following their treatment are not meet by routine follow-up

9. Routine follow up appointments are not effective in terms of detection of recurrence. • The majority of recurrences are detected either by patients themselves or on investigations which can be planned without a patient having to attend a clinic.

10. Resources are being wasted by providing services that are not fit for purpose • Assessing and Care Planning with your patients will mean that their needs are addressed and resources are used appropriately

12. Thomas Jefferson 1743-1826 “It is a capital mistake to theorise before one has the data”

13. Timeline for The National Cancer Survivorship Initiative 2009 2010 2011

14. Testing & Evaluating • Assessment and Care Planning • Cancer Care Review • Treatment Record Summary • Immediate Post Treatment

15. Adult Test Communities • Phase 1 – 15 sites • (2 in Wales) • Models of Care • Phase 2 – 11 sites • Assessment and • care planning • Treatment Record • Summary

16. Tested Models

17. ACP Tools in Use • ACP Framework self assessment tool • Distress Thermometer* • SPARC • PEPSI COLA aide memoir • Locally developed HNA tools Care Plans • As part of assessment tool • Locally developed • Electronic versions

18. Success Factors • Clinical Support • Focus on quality • Protected time to review systems and practice • Multi disciplinary approach • Patient involvement • Good baseline data – national and local • Sharing good practice • Enthusiasm for change

19. Learning so far • ACP post treatment is a key enabler for supported self management • Positive benefits – patients, staff • Assessment tools – simple, flexible, • Care plans • CNS resources – time, space, training • Identifying patients at the right point in journey • Treatment Record Summaries

20. Next steps • ‘The Improvement Story so Far’ document – July 2010 • Economic Evaluation – pattern and cost of follow up • Proposed ‘pathways of care’ for commissioning – Autumn 2010 • Picker and Tribal evaluation reports – Sept/Oct 2010 • End of pilot stage report – Jan 2011

21. The Future • Competency training what is available and what can be delivered in 2011? • The use of electronic solutions • Management systems • Directory of Care • Patient Information • Exercise programmes • Education events

22. Useful Links for further Information www.nsci.org.uk www.improvement.nhs.uk/cancer www.dh.gov.uk