A Network Approach to Survivorship

1. A Network Approach to Survivorship Jeanette Smalley Jeremy Such Marion Hopwood

2. Why look at Survivorship? Far reaching impact on patients, families & staff Priority for Network Cancer Partnership Group (CPG) some time prior to the Network Group being established

3. Survivorship Some patients don’t like the word, preferring: Living with and beyond cancer Cancer free Other phrases to describe how they feel

4. What does survivorship mean? Different things to different people At what point do you become a survivor? Diagnosis 1yrpost treatment – later?

5. What Does Survivorship Mean to Our Cancer Partnership Group Members? – 2010 Away Day A longer life A chance to give something back Seeing grandchildren grow up Hope Heightens appreciation of others Who is really there for you Good quality of life Living well with cancer Able to cope A return – coming back Second chance Opportunity to revaluate what’s important Getting back to some normality Develop more empathy (sometimes) Coping with the “dark voices”

6. Work and finance Vocational rehabilitation Active and advanced disease Children and young people Consequences of treatment / Late effects Assessment and care planning Health and Wellbeing Clinics Self management Physical activities Research Survivorship Workstreams and Project Groups

7. Why a Network Approach? Number of strands to survivorship – cross sector approach necessary Tie in with national initiatives: information agenda, holistic needs assessment, patient experience etc Worthy of another network group – not a Partnership subgroup

8. Survivorship work was happening prior to the network group being set up – including: Ongoing developing of information leaflets, three of which are on the cd we have with us today Network Support Group Development Manager

9. Survivorship Workstreams This agenda also threads through to the End of Life work. For some patients they will not “survive”. What can we do to ensure that the time they have left is of as good a quality as possible?

10. Partnership Working Considerations: • A broad agenda • Partnership working • The 3rd sector • Service users • An effective & practical group • A work in progress

11. Key Partners • Cancer Partnership Group members (3) • Macmillan MDM • Local 3rd sector representatives (2) • Network Nurse Director • Cancer Partnership Group Facilitator • Network Support Group Manager • Clinical Nurse Specialists (2) • Information Centre Managers (2) • Links to local “National Pilot” sites – HWBC & VR

12. Communication Keeping the Steering Group informed on the wider network of research & activities • Update from Learn & Share Events re the national pilots • Reports from Macmillan Learning & Development days • Reading (ncsi.org.uk) : Share and brief • Input & update from membership of steering group • Comment and guidance from partnership group • Reports from local “National Pilot” sites

13. Macmillan Vocational Rehabilitation Pilot – Lancashire Condition Management Programme • The vocational rehabilitation model • The CMP model • Learning • Feeding into the national evaluation

14. Macmillan Health and Wellbeing Clinic – Blackpool Fylde & Wyre • Model – presentation & stalls • Held 3 (4th due) • Varied location (will vary time) • Key Learning: • Clarity re key aim of the clinic and how to achieve it • Invitation & confirmation • Consultant and management buy-in • Perception and integration into pathway • The way ahead

15. Where were we Summer 2010? • Growing awareness and groundswell re Survivorship • 10 nationally identified work programmes and groups • 5 nationally identified “key shifts” • 2 national pilot sites within the network • Invitation to be part of the next national pilot • Local health service providers and organisations asking “what could we be doing?” • Wanting to find a practical way to reach and assist more people who have survived cancer, and the growing numbers who will survive it in future

16. Overlapping Agendas & Strong Patient Voice • Supportive and Palliative Care IOG • Key worker • HNA • Patient information • User involvement • Psychology • Rehabilitation • End of Life Care • Children and Young People IOG – particularly the focus on transition, TYA and follow up • Cancer Partnership Group had identified this as their key priority for this year

17. Getting Clarity • Purpose of the group (ToR) • Membership – who needs to be there to make this happen • Understand what is happening nationally – clarity over the overlapping agendas, NCSI website and papers • Emphasis on work that needed to be done over the next 12 months • 5 key shifts pivotal to the organisation of the work

18. For Each Key Shift: • How do you introduce a “key shift”? • Identify initial projects with demonstrable outcomes • Suggested first actions • Raise the profile • Lead person and timescales • Clarify potential overlapping agendas and how these would be taken forward

19. Key Shift 1 • A cultural shift in the approach to care and support for people affected by cancer – to a greater focus on recovery, health and well being after cancer treatment.

20. Key Shift 1 – Initial Projects • 2 events aimed at promoting a focus on recovery, health and well being • Wig event aimed at patients • Sponsorship – champagne and canapés • Coincide with launch of local wig bank • Health promotion event aimed at staff • Sponsorship – health club • Key messages re physical fitness for cancer patients, diet, signposting

21. Key Shift 2 • A shift towards holistic assessment, information provision and personalised care planning. This is a shift from a one-size fits all approach to follow up, to personalised care planning based on assessment of individual risks, needs and preferences.

22. Key Shift 2 – Initial Projects • Seek national advice on the overlap with the key worker and holistic needs assessment (HNA) agenda (S&PC IOG) • HNA pathways for each site specialty • Workshop on importance of HNA and role of the key worker • Provide education and training to ensure full implementation and recognition of need to link into individual care planning • Set up working group to consider template for personalised care planning - consider how this links to the 4 tier models of psychology and rehabilitation (S&PC IOG)

23. Key Shift 3 • A shift towards support for self-management. This is a shift from a clinically led approach to follow up care to supported self-management, based on individual needs and preferences. This approach empowers individuals to take on responsibility for their condition supported by the appropriate clinical assessment, support and treatment.

24. Key Shift 3 – Initial Projects • Develop Health and Well being Clinic in Blackpool as part of National Macmillan pilot • Variety of approaches re speakers, location, stall holders • Identification of patients • Clinical and management buy in • Cost effectiveness • Re-launch • Develop widespread implementation of patient led self management programmes • Champions within the Network • Different models • Consider the overlap with the Rehabilitation pathways developed by NCAT

25. Key Shift 3 – Initial Projects (cont) • Develop nursing workforce • Involved in National workshop examining key elements of CNS role (H&N and Colorectal) • Considering use of Care Co-ordinator (Band 4?) role building on experience of Integrated Cancer Care Programme pilot

26. Key Shift 4 • A shift from a single model of clinical follow up to tailored support that enables early recognition of the consequences of treatment and the signs and symptoms of further disease as well as tailored support for those with advanced disease.

27. Key Shift 4 – Initial Projects • Form a working group to consider the key areas of consequences of treatment • Patient • Clinical Oncologist • Nurse Specialist • Hospital Manager • Each NSSG is being asked to consider the key signs and symptoms of further disease that patients should be informed about • Consider the overlap with the network patient information agenda and the national information prescriptions agenda

28. Key Shift 5 • A shift from an emphasis on measuring clinical activity to a new emphasis on measuring experience and outcomes for cancer survivors.

29. Key Shift 5 – Initial Projects • Develop system of measuring experience and outcomes for cancer survivors • Consider current systems in place e.g. national patient experience survey, local audits, PROMs • Steering group involving patients and all the Lead Nurses • Discuss potential new ways of measuring experience and outcomes and involve the CPG

30. National Cancer Patient Experience Survey • Why is this important for the partnership Groups? • What does it tell us? • What are we going to do about it?

31. Why is this Important for the Partnership Groups? • It’s a lever to get things changed • It will help identify future work activities (perhaps) for the network groups

32. What Does It Tell Us? • Lots! But it needs detailed analysis and also flags further work being needed around: • Rarer cancers – v low numbers of respondents • Sometimes, just because you have a score in the upper 20% figure doesn’t mean you are doing it well

33. What are we going to do about it? • Nationally, the Partnership Forum is looking at the top priorities for the Groups. • Locally, LSCCN have already looked at three of the issues highlighted • Locally, LSCCN have written a report for each NSSG (template on cd) highlighting results • We are also developing a local network questionnaire based on the national result . This will comprise of core , trust and tumour specific questions to get underneath the national findings

34. In Conclusion • Lots of work happening and the framework of addressing the key shifts required for the Survivorship agenda have enabled us to bring this together under one umbrella. • We still need to set up streams of work around children & young people and tailored support for those with advanced disease. • The ten national workstreams and groups are all covered through this approach and we have also developed a system for sharing findings from the website and keeping people up to date

35. In Conclusion • This is an important agenda for patients and health service providers alike. • By developing a strategic framework in Lancashire and South Cumbria – we are starting to deliver the key shifts that are required to improve the experience of cancer survivors.