Organ Donation and Transplantation Strategic Performance Update Sally Johnson 26 March 2015

Overview Performance against ODT strategic targets Overview of planned initiatives and timescales Updates on actions and progress against each outcome

Taking Organ Transplantation to 2020: Outcomes 1.Action by society and individuals will mean that the UK’s organ donation record is amongst the best in the world and people donate when and if they can. 2.Action by NHS hospitals and staff will mean that the NHS routinely provides excellent care in support of organ donation and every effort is made to ensure that each donor can give as many organs as possible. 3.Action by NHS hospitals and staff will mean that more organs are usable and surgeons are better supported to transplant organs safely into the most appropriate recipient. 4.Action by NHSBT and Commissioners means that better support systems and processes will be in place to enable more donations and transplant operations to happen.

Taking Organ Transplantation to 2020: Outcome Measures 1.Consent Rate – 80% by Deceased Organ Donors per million population – 26pmp by Increase Organ Utilisation – 5% by Patients Transplanted per million population – 74 pmp by 2020

Headlines Activity levels recovered end Variable since with drop in potential BSD patient in January & February. Donor and transplant numbers below 2013/14 levels Latest forecast: 1,300 donors and 3,362 deceased donor transplants Performance against all four strategic objectives is red

Measure 1 – Consent rates Stage 1 – 100% of those on ODR Stage 2 – increase consent from those not on ODR

Measure 1 - Consent rates by Region South West = 82% Some teams already at world class levels

Measure 1 – ODR percentage Note: Population data are not available for the Organ Donation Services Team areas High levels of ODR registration help

Measure 2 – Donors pmp #1. Spain = 35.3 #2. Croatia = 33.5 = North East #3. Portugal = 27.8 = Northern Ireland Note: Population data are not available for the Organ Donation Services Team areas Some teams already match world class or come close

Measure 2 – Donors pmp Note: Population data are not available for the Organ Donation Services Team areas There is still the opportunity to do better

Measure 2 – Donor Numbers The trend is still upwards: variation is the challenge

Measure 2 – Performance against target Organ Utilisation can be a challenge

No of consents may increase but donors fall & still too many refusals

% fall in 6 years Active kidney transplant list Year end

Measure 3 – Changes in donor demographics Proportionally fewer donors are aged 70+ For kidneys, there appears to be less appetite to use the higher risk donors in the most recent year, while for livers there is no such trend. Kidney offer decline rates are higher in the last two years for extended criteria donors. Age of deceased donors Percentage (%) 2014/15 Based on activity to 1 March DBD Percentage (%) DCD

Measure 4 – Transplant numbers Note: Population data are not available for the Organ Donation Services Team areas Allocation schemes distribute organs to different areas of the UK

Factors influencing performance 5% fewer DCD donors Proportionally fewer donors aged 70+ For kidneys, there appears to be less appetite to use higher risk donors, while for livers there is no such trend Kidney offer decline rates are higher in the last two years for extended criteria donors ¼ of potential DCD are still not referred Decreased SNOD availability (change to cohort recruitment & maternity/sick leave) – impacting on staff embedding time Delay to the Public Behaviour Change Campaign

Tactical Actions being taken to address donor and transplant numbers All regional teams examining individual consent data and taking appropriate action Monthly PEER review/ Action Learning Set training being organised in 9 teams (London, Yorkshire & Midlands already done) with Practice Development Specialist team to review each consent and refusal Monthly RCLOD/CLOD telecons in South West and South Wales CQUIN launch in Oxford Integrated care pathway in Midlands Values based cohort recruitment: successfully recruited 25 WTE & exploring ability to establish ‘bank’ contracts Annual consent rate training for all SN-ODS

Outcome 1 – Strategic Initiatives Public Behaviour strategy: –Christmas campaign; Sign for Life football club campaign; extension of government partnerships; Faith Action Plan activities eg Muslim Scholar meetings; National Transplant Week moved to September New ODR to be launched 2015/16 Options for donation incentives to be considered by UKDEC Wales: extensive campaign to support decision making ahead of new legislation Scotland: continue marketing campaign supplemented by E-book for schools Northern Ireland held a ‘talk to your family day’ ‘A Mother’s story’ video

Outcome 2: Strategic Initiatives Workforce Strategy- from April designated requester pilot in North West and Yorkshire & paper triage of potential donors starts ODT National Hub – business case Coroners project: evidence being evaluated. James Neuberger to speak at Coroners training conference –Portfolio of evidence gathered – further evaluation required –Survey on relationships between staff and coroners about to be launched RCoA Guidelines for the Provision of Intensive Care Services includes specific organ donation guidance Organ donation established in medical training using ODT materials Diagnosis of death <2months under review

Outcome 3 – Strategic Initiatives Accredited training programme for retrieval surgeons in development: working with Royal College of Surgeons and Dutch Transplant Service Phase 2 of ‘Scout’ project starts in April Joint (with NHS England) peer review of Cardiothoracic units due to complete by April. Includes discussion of organ utilisation. Ante-mortem interventions workshop next week Funding for service development of new perfusion technologies (NRP & EVLP) Appointing Clinical Lead for Organ Utilisation to address variations

Outcome 4 – Initiatives NORS Review complete: moving into implementation phase New consent training programme for Specialist Nurses being rolled out. ODT Hub outline business case being finalised for May Board Project to reduce use of paper forms for transplant follow-up, working with the UK Renal Registry, underway. Duty Office continuing to explore new ways of working eg Case Management Donation Congress – March

Future challenges Operational Funding – resolved for 2015/16 but HDs not able to make recurrent commitment in some cases Development funding: funding model under discussion by ODT Sustainable Funding Group. Living donation tariff now promised for 2016/17: financial impact on NHSBT unclear. Creating a culture of continuous improvement throughout to donation and transplantation community Building ODT capacity to deliver key projects

Deceased donors & transplants Target figures to is still achievable!

Measure 2 – Performance against target International Experience Early initiatives To 40pmp Initiative Major initiatives have had an impact They have often been followed by an initial slump Further initiatives, such as in Spain, have been successful Breakthrough Collaborative