1. Access to Transplantation in West Midlands The call for action Graham Lipkin Wmids Transplant First Event 16 th July 2015

2. Survival advantage of Renal Tx over dialysis Wolfe RA. N Eng J Med 1999;341:1725-30 RR at 18monthsPredicted years life without Tx Predicted years of life with Tx All recipients0.321020

3. Survival advantage of Renal Tx over dialysis Wolfe RA. N Eng J Med 1999;341:1725-30 RR at 18monthsPredicted years life without Tx Predicted years of life with Tx All recipients0.321020 For suitable patients Transplantation doubles length of life Improved QOL Health economic benefits +++

4. Transplant Early Improves Outcomes 100 90 80 70 60 50 40 30 20 01224364860728496108120 Months post-transplant % event free survival Pre-emptive 0–6 months 6–12 months 12–24 months 24+ months Meier-Kriesche et al. (2002)

5. Transplant Outcome-Timing 100 90 80 70 60 50 40 30 20 01224364860728496108120 Months post-transplant % event free survival Pre-emptive 0–6 months 6–12 months 12–24 months 24+ months Meier-Kriesche et al. (2002) Outcomes best if Transplant before dialysis or shortly after

6. Major Successes in Transplantation RA CD Forum 25th March 2015

7. Increasing Transplant Numbers

8. Adult Kidney Transplants

9. Prevalent Transplant Population RA CD Forum 25th March 2015

10. Transplant Outcomes?

11. Waiting List

12. Outcome of kidney Transplantation in the Wmids Donation Brain Stem Death Graft survival 1Year 94% 5 year 85% 10 years 71% Donation Cardiac Death Graft survival 1Year 96% 5 year 82% 10 years 80%

13. Outcomes of Wmids Transplants are Good 10y patient survival after listing

14. Challenges to Overcome

15. Transplant Access Rates: How do we compare?

16. Access to Transplantation in West Midlands

17. Waiting Time for Deceased Donor Transplant

18. Is Our List Different? RA CD Forum 25th March 2015

19. Outcomes 3r After Listing

20. Are Wmids Units listing patients in a timely fashion? RA CD Forum 25th March 2015

21. Pre-emptive Transplant Listing

22. Pre-emptive Transplantation Deceased donorLive donor

23. How do our kidney offer decline rates compare nationally? RA CD Forum 25th March 2015

24. Kidney Decline Rates

25. Monthly Turndown QE Meeting.

26. Kidney Community as an Exemplar

28. What Works-Guidance? ATTOM (NIHR) Clinical champions of Live Donation Well organised low clearance MDT Written referral guidelines for Unit Patient Education materials and early discussion of RRT options Unplanned start (fast track pathway for crash Landers) Audit outcomes Involve patients-information/PV Involve patients on waiting list

29. ATTOM Reports 2015/16 Study Aims: To explore equity of access to kidney and pancreas transplantation across the UK To optimise organ allocation to maximise the benefit, including cost- effectiveness, from kidney and kidney-pancreas transplantation.

30. ATTOM Qualitative Outcomes 2014 Patients reported that they had received little information about the listing process. Patients did not know if they were listed or had found they were not listed. Many patients were not aware of pre-emptive transplantation and believed they had to be on dialysis before being able to be listed. Some patients were reluctant to consider family members as potential donors as they reported they would feel ‘guilty’ Nephrol Dial Transplant (2014) 29: 2144–2150

31. Kidney-Quality Improvement Partnership (K-QuIP) K-QuIP Steering Group Professional societies: NHS England Patient Groups Health Foundation, KRUK Registry Regional Networks (SCN) AHSN/Senates Local Renal Units CCGs Steering Group (Strategic) Identify national priorities (UKRR variation+) & advise CRG-NHS Develop 2+ key National Projects/year Education champions (QI, good practice, methodology) Communication (Website development, Conferences) Reporting to partner organisations, Support local /Regional Champions Identify funding Knowledge-platform development Regional Networks (Support) Identify Regional Priorities Identify funding (Commissioner SCNs, AHSN) Support Unit/Regional champions Education (QI, good practice, methodology) Incorporate QI into Regional Network Audit Meetings Share good practice Support implementation Local Trusts (Delivery) Unit QI leads (Nephrologist/Senior Nurse) Identify local Priorities (Regional National) Education (local Governance Meeting) Feed ideas for QI to Region and National groups Communication Report QI into Regional Network Meetings Share good practice to Network

32. Proposal to Wmids SC Network Wmids Transplant audit/Education Wmids Annual Audit Paediatric renal transplantation Your Chance to Mould

35. Develop Project Steering Group & Leads Steering Group: Project manager, Nephrologists, Surgeon, senior nurse, patient Structure: existing designated transplant leads for each Renal Unit in Wmids to act as project leads for each Unit. – Nursing & medical – (pre-dialysis clinic lead)?

36. What can Steering Group Provide? Project management, support & advice Training in focus QI around project Data collection and feedback 2 monthly telecon updates Central repository – Shared Protocols/patient information/Tx pathway design – Knowledge library – Invitation sent to CEO and Divisional/Clinical Director Develop agreed Regional Tx w/l acceptance criteria (national) Develop Regional W/L referral proforma Arrange meetings: Focus on Wmids Audit Nov 2015

37. Nephrology First steps: baseline Assessment Local leads (champions) to engage team in Transplant First Project- MDT (grow the support) Involve patients: patient satisfaction survey KPA (supported) Patient transplant information review (supported) Establish baseline Tx listing activity data & ensure ability to collect activity (supported) Review current local pathways to Renal Tx referral identifying bottle necks/blocks (supported) – Pre-dialysis clinics, outside Pre-dial clinics, failing transplants

38. Written thresholds (criteria) for waiting list referral: assess/investigate 6- 12 months prior to predicted ESRF (eGFR thresholds 20/15 (supported)) Pathway for transplant list referral: Leads review local referral pathway & embed Transplant First focus if required? Structured MDT review (Supported) Local RCA for all patients who start dialysis without transplant list status on monthly basis? Annual review structure for all wait listed patients (QE IT Support) Document Tx list status for all patients with ESRF 6 monthly (listed, suspended, being assessed & permanently unsuitable) Unit structure to report progress (Routine MDT meetings) Nephrology Next steps

39. Transplanting Centres Increased linkage with Referral Units – Linked coordinator, surgeon, transplant nephrologist (review clinics) Review outcomes data with referring units Realistic/critical review of waiting W/L suspended patients: patient informed in writing, reason expressed and review date noted 18 week pathway for LD workup (audited) Develop robust transfer/referral handover template

40. Data Collection For Units not just Centres 6 monthly – Patients starting dialysis without transplant status – Wait list registrations & Pre-emptive listing & LD & DD transplants/take-on – Total, LD, DD Tx as proportion of total dialysis population – Kidney decline rates & kidney/patient outcomes – Proportion suspended Unit specific 1, 5 & 10y graft/patient survival

41. Transplant First Can Make a Real difference if we want it to

42. Kidney-Quality Improvement Partnership (K-QuIP) K-QuIP Steering Group Professional societies: NHS England Patient Groups Health Foundation, KRUK Registry Regional Networks (SCN) AHSN/Senates Local Renal Units CCGs Steering Group (Strategic) Identify national priorities (UKRR variation+) & advise CRG-NHS Develop 2+ key National Projects/year Education champions (QI, good practice, methodology) Communication (Website development, Conferences) Reporting to partner organisations, Support local /Regional Champions Identify funding Knowledge-platform development Regional Networks (Support) Identify Regional Priorities Identify funding (Commissioner SCNs, AHSN) Support Unit/Regional champions Education (QI, good practice, methodology) Incorporate QI into Regional Network Audit Meetings Share good practice Support implementation Local Trusts (Delivery) Unit QI leads (Nephrologist/Senior Nurse) Identify local Priorities (Regional National) Education (local Governance Meeting) Feed ideas for QI to Region and National groups Communication Report QI into Regional Network Meetings Share good practice to Network

43. Calculate Patient Waiting List Time? http://www.odt.nhs.uk/transplantation/guidance-policies/tools/

44. What are we doing? Live Donor Review at QE Annual Review on waiting list ‘Turn Down’ Meetings Antibody incompatible transplantation Transplant First QI Mandate KQuIP

45. Summary Low LD and DD Renal Transplantation Across Wmids – Critical assessment of waiting list – Improve pre-emptive/timely listing – Annual Review on Tx waiting list – Address ‘turn down’ rates – Increase live donation rates – Regional QI ‘Transplant First’ – National Approach