Heather Monteverde , Head of Services, Macmillan N. Ireland

1. Negotiating roadblocks: when implementing a risk stratified model of cancer follow up Heather Monteverde, Head of Services, Macmillan N. Ireland Moyra Mills and Edel Aughey Macmillan Cancer Service Improvement Managers, Northern and Belfast Trust, N. Ireland

2. WiFi name: WifiLoveMCRPassword: internetJoin the conversation on Twitter using #DrivingChange

3. https://www.youtube.com/watch?v=Y4ZZBrPaxhI

4. “After care is an after thought!”(2010)

5. 2011

7. (TCFU) a partnership approach

8. TCFU programme aimed to.....

9. TCFU programme included Regional projects • Breast Cancer • Prostate Cancer Individual trust projects • Head and neck • Skin • Gynae

10. Elements of the programme • Implement new post treatment pathways • Introduce the recovery package • survivorship issues • Redesign systems and processes • PAS coding, mammography

11. Elements of the programme • Implement new post treatment pathways • Introduce the recovery package • survivorship on agenda • Redesign systems and processes • PAS coding, mammography

12. Elements of the programme • Implement new post treatment pathways • Introduce the recovery package • survivorship issues • Redesign systems and processes (pt safety) • PAS coding, mammography Safe & effective

13. Regional TCFU Programme Structure Health Social Care Board PHA Macmillan NI Cancer Survivorship Project Steering Group NICaN Macmillan Programme Lead and Macmillan Programme Manager within NICaN WHSCT SHSCT NHSCT SET BHSCT Local steering groups and local Macmillan Project Managers Each project to have identified clinical champion and CNS and primary care involvement

14. Phases of TCFU programme 2009 - 2010 2. Set up 2011 2015 2012 2014 2013

15. How?

16. We used recognised change methodologies & tools

17. We involved the MDT in Value Stream Mapping Events (4) • Preparation • Objectives • Start & end points • Scenarios • Runners, strangers, • Measures of success • Anticipated outcomes • Produce new pathways / future state • Develop action plan

20. An external evaluation was commissioned by Macmillan

22. Breast Impact and Outcomes Patients Service 61% of individuals diagnosed with breast cancer are on self directed aftercare pathway Hearts and minds have changed Breast Pathway has been redesigned Duplication and backlog reduced More efficient and effective breast service within this new model • Individualised, tailored follow-up • Timely mammograms & results • Patient needs addressed • Increased patient satisfaction • Improved patient experience • Patient involvement has been invaluable

23. Surgical breast review waiting lists reduced by over one third

24. Duplicate follow up reduced by 45%

25. Monthly hits 191 - 676 www.survivorship.cancerni.net

26. Its now business as usual • Breast cancer follow up commissioning specification in place • Macmillan/ HSCB partnership ongoing re Cancer Service Reform incorporating TCFU principles • Macmillan service improvement leads now in post in each of five trusts

27. TCFU principles are now being spread Regional Programmes Breast Prostate Colorectal Gynae Dermatology Testicular Head & Neck Haematology Renal

28. However there were roadblocks to be negotiated along the way!

29. Roadblocks encountered • “There is lack of evidence” • “Its only a cost cutting exercise” • “My patients want to see me – and we need to see those that are doing well for our own encouragement” • “Self directed follow up is risky and unsafe – patients will be lost to the system” • “I’m not having PWC accountants auditing my clinical practice!” • “We’re far too busy – more stuff dumped on us” • “We need to see them to do hormone switch”

30. We engaged at different levels Through the Network clinical reference group we collaborated and consulted on • High level pathways • Relevant Protocols • Patient information • PAS coding Through the Trustswe engaged locally with colleagues to enable ownership • Involving them in the process • Supporting - backfill • Responding to concerns • Mammography system We met clinicians for coffee and chatted through concerns Macmillan supported workshops, two evening meetings with consultants and another for BCNs, visits from clinical experts We reported back through the Director of Commissioning at HSCB (Chair of Steering Group)

32. Active engagement with clinicians is essential • Getting everyone bought is crucial but challenging – engaging hearts and minds • Clinical leads need evidence (own data helps) demonstrating safety helps (mammography, PAS codes) • Security in peer to peer endorsement • CNS essential to new pathways • Cancer managers leadership

33. Other critical success factors • Programme mandate, governance and structure • Project management (and training) • Partnership and coordinated approach with positive working relationships • Patient involvement at all levels across entire programme • Timescales need to be realistic

34. Take away messages • Complex change is hard but achievable • Effective partnership working and project management help create the conditions for change • Clinical cooperation is essential but clinical leadership is preferable! • Evidence and involvement are key enablers • TCFU principles are now being mainstreamed

35. 56 year old woman “I really appreciated being put in control of my own recovery. I felt confident that I knew the signs and symptoms to look out for, when to call and, more importantly, who to call. I certainly didn’t feel abandoned. Quite the opposite.”

36. hmonteverde@macmillan.org.uk Edel.aughey@belfasttrust.hscni.net Moyra.mills@northerntrust.hscni.net