Transplant First: Addressing inequality in access to Kidney Transplantation in the West Midlands

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Project Mandate Transplant First: Addressing inequality in access to Kidney Transplantation in the West Midlands West Midlands Cardiovascular Strategic Clinical Network

Project Mandate Transplant First: Addressing inequality in access to Kidney Transplantation in the West Midlands Version number: 1 First published: 5 th May 2015 Prepared by: Dr Graham Lipkin, Nicholas Inston, Kerry Tomlinson, Helen Spooner and Cecily Hollingworth Classification: OFFICIAL The NHS Commissioning Board (NHS CB) was established on 1 October 2012 as an executive non-departmental public body. Since 1 April 2013, the NHS Commissioning Board has used the name NHS England for operational purposes. Project: Transplant First: Addressing inequality in access to Renal Transplantation in the West Midlands Expert Advisory Renal Expert Advisory Group Group: Project Manager: Cecily Hollingworth EAG Chair: Dr David Milford Date : 5 th May 2015 Reference: TBC The project mandate should be an outline of a proposal, enabling a decision to be made as to whether or not it can progress through to a project brief. 2

Contents Contents... 3 1 Purpose of the project... 4 2 Background, evidence and need for the project... 4 3 Project objectives, benefits and measurement... 4 4 Timeline... 7 5 Data... 7 6 Project resources and costs... 7 3

1 Purpose of the project Briefly outline what the project will involve and what it will do. What is the problem or issue it will address? How will it address this? This project aims to address the inequality in access to kidney transplantation for suitable adult and paediatric patients in the West Midlands by: Increasing live and deceased donor kidney transplantation rates Increasing pre-dialysis (pre-emptive) kidney transplant wait-listing and transplantation rates This will result in: Improved access to kidney transplantation for all patients in the West Midlands A progressive reduction in the excessive waiting time to renal transplant in the West Midlands 2 Background, evidence and need for the project Please outline the background to this project. How do you know there is a need for this project? Data analysis provided by the UK Renal Registry and NHS Blood & Transplant demonstrates: Low live donor and deceased donor kidney transplant rates in the West Midlands compared with national data. Low pre-emptive kidney transplant listing and transplant rates in the West Midlands compared with national data. Low acceptance rates for deceased donor kidneys in the west Midlands compared to national data The West Midlands has some of the longest waiting times for kidney transplantation in the UK 3 Project objectives, benefits and measurement Please state what the project is trying to achieve. These should be measureable, and defined in terms of the projects major deliverables and benefits expected. Project objectives: Identify Steering Group and Project Lead (Nursing and Medical). Identify at least one designated lead Renal Transplant Physician and Senior Nurse at each Renal Service within the region who will be accountable for kidney transplantation development and act as the Project Leads at each Unit. 4

Benefits: Develop written acceptance criteria for inclusion on the kidney transplant waiting list across the Region. Review current pathway in pre-dialysis clinics to ensure a Transplant First focus for suitable patients at each Renal Unit. This would include a written pathway for transplant list assessment and referral to the Transplanting Centre for each Unit. Refer all suitable patients for kidney transplant listing 6-12 months before anticipated need to start renal replacement therapy (RRT). Improve access to suitable patient information regarding live and deceaseddonor kidney transplantation at each Renal Unit. Develop Root Cause Analysis (RCA) and audit of all patients who start RRT in the West Midlands without a transplant list status documentation (cross referenced to national benchmarking data already returned). Create greater linkage (designated transplant coordinator, transplant surgeon and physician) between transplanting and referring centres. Ensure recipients with a failing transplant are given same access to preparation for RRT including transplantation as non-transplant patients. Create an annual review structure for patients on the deceased donor kidney transplant waiting list to assess suitability for ongoing active listing and potential live kidney donation (Central reminder system). Develop infrastructure for each dialysis unit to review & record 6 monthly all patients receiving dialysis (treated by haemodialysis and peritoneal dialysis) for suitability for kidney transplantation listing. This will be recorded by each Renal Unit (Categories: Listed, potentially suitable, and permanently unsuitable). Report six monthly the deceased donor graft acceptance rates in Transplant Centres (Birmingham and Coventry) as compared to National rates (NHSBT) Develop 18 weeks pathway monitoring for assessment of live kidney donors across the Region. All patients who require suspension on the renal transplant waiting list will be notified, have the reason for suspension explained and be given a review date. Develop quarterly audit & feedback of total transplant, live donor, deceased donor transplantation rates and pre-emptive transplant listing rates at each Unit (NHSBT & Strategic Clinical Network). Develop annual renal transplant education and audit event to share best practice with reporting by each Unit. Launch event for Project. 2 monthly Transplant First telephone conference for life of project for participants. Develop webpages for the project on the Strategic Clinical Network website. Improved access to kidney transplantation whether being treated at a transplanting or non-transplanting Renal Centre. Increase pre-emptive kidney transplant listing and kidney transplantation rates across the West Midlands. 5

Increase total live and deceased donor kidney transplant rates resulting in major clinical and health economic benefits. Reduce waiting time to kidney transplantation listing for suitable patients Measures: Annual kidney transplant waiting list registration rates expressed as a percentage of total dialysis population (under 70y) & annual take-on to dialysis at each West Midlands Renal Unit (UKRR & NHSBT). Total, Live Donor and Deceased Donor kidney transplant rates for each Renal Unit in the West Midlands (NHSBT) expressed as a proportion of each Renal Unit s total kidney transplants performed/annum and as a proportion of each Unit s total dialysis population (under 70y). Unit-specific pre-dialysis (pre-emptive) renal transplant-listing registration rates as percentage of all kidney transplant-list registrations for each Unit (NHSBT). Waiting time to renal transplantation for each Unit & for West Midlands (longer term measure-nhsbt) NHSBT deceased donor Kidney transplant -offer decline rates (NHSBT) in comparison with rates across the UK (6 monthly feedback of rates of deceased donor kidney graft decline rates). Proportion of total number of patients on the renal transplant waiting list who are suspended (NHSBT). 1, 5 and 10 year kidney graft and patient survival rates (NHSBT) for each Unit (NHSBT)-total, live donor and deceased donor 6

4 Timeline When will the project begin and end? To start 1 June 2015 for a two-year period (ending March 2017), with the bulk of the work falling within the first year. 5 Data What data/datasets will be used to measure the project? NHS Blood & Transplant Annual Report on Kidney Transplantation UK Renal Registry Annual Report 6 Project resources and costs Please outline how much the work will cost in total including staffing and other revenue costs, if applicable. Resource required Cost Staffing: Project Clinical Leads (2 PAs) Quality Improvement Lead (2 days/week) Administrator (1 day/week) Other: Stakeholder consultation (venue/ refreshments/ etc) Annual education and audit event (first two years) 2,000 4,000 7