Making the Changes that Matter LCA Survivorship Forum 1 st May 2014

1. Making the Changes that MatterLCA Survivorship Forum1st May 2014

2. Welcome and Overview of the afternoon

3. Survivorship Pathway update:Progress and Plans Nicola Glover Survivorship Project Manager

4. LCA Survivorship Group: The story so far (2013/4) • Group set up, including three communities of practice • Engagement • Provider level • Clinical Fora • With other pathways • Pan-London including with commissioners • HNA tool • Treatment summary agreement • Metrics

5. The story so far (continued) • Survivorship service mapping • Lymphoedema service mapping • Lymphoedema specialist education mapping • Complementary therapies guidelines developed • Consequence of cancer position statement • Motivational interviewing courses • Skin (urology) HNA screening tool • Fertility pathway

6. What were the metrics?

7. And what will they be?(from NHSE London Commissioning Strategy)

8. LCA Survivorship Group: Next steps (2014/5) • Continue aim of reducing inequality and improving patient experience • Refine metrics inline with new commissioning intensions • On-going work on recovery package • Solutions to (full) HNA implementation • Support package for implementation of TS • Agreed approach to roll-out of HWBE • Develop pathways for lymphoedema management • Audit complementary therapy services • Work towards LCA-wide best information and referral pathways for exercise, diet and return to work/education • Research and audit position statement and strategy

9. Clinical Board The clinical boardare responsible for the clinical leadership of the LCA. They are answerable to the members board The pathway groupis responsible for driving the work of the pathway. Members must represent: their work group Their profession Their employing organisation Chair Natalie Doyle TheChair is responsible for the leadership and vision of the Survivorship pathway and is answerable to the clinical board. She must deliver against the model of care The set up of the pathway is determined by her to ensure delivery and output is optimal Thework streamsare responsible for delivering their work programme to them. The membership is based on the perceived strengths of both the individuals and of the stream in its entirety. Members can be co-opted from outside the Survivorship Pathway Group. See page 2 for membership Pathway Group See ToR • Consequences of Cancer Treatment affiliated groups • Pain • Fertility • Sexual Dysfunction • Menopausal symptoms • Pelvic radiation disease • Fatigue • Bone health • Work-streams • HNA implementation • Treatment summary implementation • Health and Well-being events • Metrics • Research • PROMs • Communities of Practice • Rehabilitation • Lymphoedema • Complementary Therapies TheCommunities of Practice are constituted from acknowledged experts in their field from across the LCA. They are responsible for the delivery of specific work items from the survivorship work plan in addition to their own work priorities. They have their own terms of reference but are accountable to the survivorship group. Some project management support is available to them Clinical Fora Theconsequences of cancer affiliated groupsare tasked with leading the investigation into current availability of services for management of consequences of cancer treatment. These groups are highly like to be constituted from several pathway groups and project management support should not be assumed. See page 2 for survivorship membership The clinical fora enables the outputs from the pathway group in its entirety to be shared more widely. It provides the LCA clinical community opportunity to constructively challenge the recommendations of the Group. Engagement with the forum is critical to ensuring recommendations and outputs are integrated into practice

10. Work-stream Membership PROMs Teresa Young Claire Taylor Michele Kenyon Bonnie Green Janine Mansi Research Theresa Wiseman Claire Taylor Metrics Julie Baker Claire Taylor Theresa Wiseman Maureen Dowling Health and Well-being Events Nic Glover Lorraine Barton Teresa Young Donal Gallagher Sonia Pert Ann Muls Treatment summary roll-out Julie Baker Kate Shaw Suzie Stanway Nic Glover HNA roll-out: Maureen Dowling Jo Jefford Michelle Kenyon Cathy Wilson Nicola Beech Ben Hartley Consequences of Cancer Membership Fertility/ Menopausal Symptoms Will Teh Alex Taylor Nick Watkins Isabel White Louise Soames Michelle Bull Nicola Glover Sexual Dysfunction Isabel White Pelvic Radiation Disease Ann Muls Fatigue Pain Suzanne Chapman Bone Health Janine Mansi

11. Questions?

12. Challenges in Changing Services Sandra Jackson Head and Neck Clinical Nurse Specialist Mount Vernon Cancer Centre

13. Moving on from Head and neck cancer workshop Collaborative Aftercare Protocol Local challenges Global challenges What would help? Focus

14. We had No research proposal No project plan No business case No budget! But we also had Patients with needs A dedicated head and neck team Early days

15. Increase in calls from patients at around 3 months post treatment Treatment consequences concerns and anxieties Some improvements in physical well being leading to reduction in OPA “Safety net removed” NCSI – Changing follow up practice What were the needs and drivers?

16. “Moving on from head and neck Cancer” workshop commenced in 2005 Important Multidisciplinary input Relevant to patient and carers What did we do?

17. Information Skills Normalising peer support Reflection Guidance on symptom concerns and alerts Soft moist textured diet or supplement lunch available Content

18. Patient recruitment & commitment Unknown expectations Creating space in job plans Support for evaluation Local challenges

19. Developed a Collaborative Aftercare Protocol Patients 2 years beyond treatment who fulfil a defined disease and patient criteria Alternating CNS led telephone consultations with clinic consultation What did we do?

20. Clinicians and AHP’s not involved in development of protocol were less engaged with new practice. Managing differing levels of enthusiasm Job plan concerns CNS cover for clinic Increased workload in clinic Securing ongoing funding Local Challenges

21. Survivorship is flourishing!

22. But The Business Case!

23. No national tariff No national HRG codes Existing tariffs do not reflect level of expertise required to provide service Barriers to permanent adoption of change

24. Difficult Conversations

25. National document outlining consequences of not providing on-going strategies Pass/ fail outcomes which would effect commissioning of services Inform negotiations between providers and commissioners Redirection of money saved on avoidable costs What would help?

26. Macmillan – Making Change happen study day Tim Anstiss – Health Coaching and Motivational interviewing Involvement from the start with the Support Oncology Research Team in The Lynda Jackson Macmillan Centre If I knew then what I know now

27. Something to share I just want to say a thank you for the Moving on from Head and Neck Cancer workshop. I was very sceptical about attending, not knowing if there would be anything relevant to me. I am so glad I decided to go. Every speaker gave me valuable information and some cases exercises which will benefit me for many months to come and possibly for life. I thought over the months of treatment I had learned everything I need to about recovering from surgery and therapy but this workshop gave me so much more. I can’t recommend this workshop highly enough to future patients.

28. Thank you

29. Appreciative Inquiry Dr Tim Anstiss M.B, M.Ed, D.Occ.Med, M.F.S.E.M  Visiting Research FellowHuman Development and Health Academic UnitFaculty of Medicine, University of Southampton

30. Close Thank you See you next time!