Scottish Donation and Transplant Group meeting: March 2023

Attendees and apologies

• Dr Iain Macleod (Co-chair), Joint Chair and Clinical Advisor for Organ Donation in Scotland
• Mr John Casey (Co-chair), Joint Chair and Clinical Advisor for Transplantation in Scotland
• Mr John Asher, Consultant Renal Transplant Surgeon, NHS Greater Glasgow and Clyde
• Sam Baker, Donation Policy Branch Head, Scottish Government
• Dr Andrew Bathgate, Consultant Hepatologist, NHS Lothian
• Lisa Burnapp, OTDT Medical Team: Associate Medical Director
• Anthony Clarkson, Director of Organ Donation and Transplantation, NHSBT
• Adam Duncan-Rusk, Business Manager, Renal, Transplant and Dermatology
• Dr Colin Geddes, Chair of the Transplant Recipient Support and Aftercare working group, NHS Greater Glasgow and Clyde
• Susan Hannah, Regional Manager for Scotland, NHSBT
• Neil Healy, Lead Nurse for Tissues, Cells and Advanced Therapeutics, SNBTS
• James How, Blood, Tissue and Organ Donation Team Leader, Scottish Government
• Chris Johnston, Consultant Transplant Surgeon/ NORS Representative, NHS Lothian
• Jen Lumsdaine, Living Donor Co-ordinator, NHS Lothian
• Professor Derek Manas, OTDT Medical Team: Associate Medical Director
• Roseanne McDonald, Associate Director for Specialist Services and National Planning, NHS National Services Scotland
• Alex McGuire, Golden Jubilee National Hospital, deputising for (Lynne Dayton)
• Andrew McKie, Secretariat, Scottish Government
• Dr Shona Methven, Consultant Nephrologist and Renal Service Clinical Director
• Dr Neal Padmanabhan, Consultant Nephrologist, NHS Greater Glasgow and Clyde
• Mark Print, Patient representative
• Dr Ben Reynolds, Consultant Paediatric Nephrologist, NHS Greater Glasgow and Clyde
• Dr Lesley Ross, Patient representative
• Dr David Turner, Consultant Clinical Scientist, SNBTS
• Dr Helen Tyler, Regional CLOD and Consultant in Anaesthetics and Intensive Care Medicine, NHS Forth Valley
• Linda White, Policy Manager, Organ and Tissue Donation and Transplantation, Scottish Government
• Peter Wyman, Chairman, NHSBT
• Dr Sharon Zahra, Clinical Lead, Tissues, Cells and Advanced Therapeutics, SNBTS

Guests

• Claire Williment, Accountable Executive: Organ Utilisation Programme, NHSBT

Apologies

• Dr Richard Appleton, Consultant in Anaesthesia and Critical Care, Scottish Intensive Care Society

• Lynne Ayton, Director of Operations Heart, Lung and Diagnostics Division, Golden Jubilee Hospital
• Sumrah Chohan, Human Tissue Authority
• Dr Colin Church, Consultant, Golden Jubilee National Hospital
• Dr Jonathan Dalzell, Consultant Cardiologist, Golden Jubilee National Hospital
• Dr Martin Johnson, Consultant Physician, Golden Jubilee National Hospital
• Dr Ann-Margaret Little, Consultant Clinical Scientist, NHS Greater Glasgow and Clyde
• Jessica Porter, Head of Regulation, Human Tissue Authority
• Dr Sinéad Power, Interim Head of Health Protection Division, Scottish Government
• Dr Radha Sundaram, ICU Consultant and CLOD, Co-chair of the Transplant Recipient Support and Aftercare working group, NHS Greater Glasgow and Clyde
• Dr David Walbaum, Consultant Nephrologist, NHS Grampian

Items and actions

Welcome, introductions and apologies

Iain Macleod welcomed attendees to the meeting. He advised that Mr Krishna Menon had been invited to join SDTG, representing the British Transplant Society (BTS) as the newly elected President of BTS in early March, taking over from Lisa Burnapp. He thanked Lisa for her useful contributions to SDTG.

He also advised that Professor Derek Manas, Medical Director, NHSBT Organ and Tissue Donation and Transplantation (OTDT) clinical team, will also attend future meetings.

Minutes of meeting of 15 December 2022

There were no actions arising from the meeting on 15 December 2022  and the minute was agreed.

UK Organ Utilisation Group report

Claire Williment presented on the recommendations from the Organ Utilisation Group (OUG) report, which was published on 21 February.

Six themes materialised in the report: placing the patient at the heart of the service; an operational infrastructure that maximises transplant potential; creating a sustainable workforce that is fit for the future; data provisions that informs decisions and drives improvements; driving and supporting innovation; and delivering improvements through new strategic and commissioning frameworks. Within the six themes there are 12 recommendations.

Claire stressed the importance of engaging with patients as part of  implementation of the recommendations.

The Department of Health and Social Care (DHSC) is establishing an Implementation Steering Group for Organ Utilisation (ISOU), bringing together those with a role in leading implementation of the recommendations, including patient representatives. The group will be co-chaired by a DHSC senior leader and senior clinician. The group will also include devolved administrations and relevant commissioning bodies.

Claire said that they worked closely with all of the health departments and a lot of the themes that came up were common across the UK. Lesley Ross noted her interest in this work, as her working group are due to launch a patient survey and she is very interested to learn lessons from the work of the OUG.

James How asked how implementation of the recommendations from the report would be prioritised. Claire reiterated that the initial plan would be to build on what is already in place, as well as looking at areas that will be relatively easy to implement. However, she noted that implementation of the plan would be progressed over a five year period and stressed that the OUG work was designed to complement the Scottish, Welsh and UK plans. John Casey agreed that the OUG report compliments the ongoing work to implement the Scottish plan.

Colin Geddes felt that the recommendations were helpful and that we should take advantage of the work that is being done in England. In particular, he felt that improving staffing was a particularly important area to prioritise. Derek Manas agreed, but raised concerns about the current level of staff morale and the lack of finance to take forward recommendations. He also emphasised the importance of working across the UK.

Claire said that it was anticipated that there will be subgroups, which drill down into recommendations and will draw on the expertise that is available. John Casey advised that it would be helpful for the SDTG to have regular access to the steering group, which Claire will feedback to DHSC. John also thought it would be helpful to discuss this further at the August SDTG.

Donation and transplantation plan: 2021-2026 implementation

Implementation overview

Iain Macleod provided a brief introduction to the work being done to progress the recommendations from the Scottish Donation and Transplantation Plan.

Reduce missed opportunities for deceased tissue donation

Neil Healy noted that there had been 75 tissue referrals between November 2022 and January 2023, with 14 referrals progressing to retrieval.

There have 23 eye donation cases referred to NHSBT, with nine eye donors retrieved by SNBTS in the last quarter. They are currently working with NHSBT and Scottish Specialist Nurses for Organ Donation (SNODs) on a range of actions to improve donation.

Sharon Zahra noted they were finding it difficult to find eye donors at present, due to low referral rates. She highlighted that there was no dedicated funding for this area of work, mentioning that NHSBT were looking for funding for this in England.

Derek Manas asked if there was a need to review the medical contraindications to help increase the number of referrals. Sharon stressed that it was illegal to progress donation from people with conditions such as HIV, Hepatitis B, etc. However, she agreed that it would be helpful to review the timings of when donation can take place, as recent evidence has shown that eyes can be donated at least 48 hours after death.

Authorisation for organ donation

Susan Hannah observed that there had been 33% improvement in donor eligibility over the last ten months, which has helped improve donor numbers, which saw a return to pre-pandemic levels in February. However, the combined authorisation rates remain low, which is similar to the rest of the UK. DCD approaches to improve understanding of what information has been shared with potential donor families are currently being reviewed. There are plans in the autumn for internal education training, such as the TURAS learning module.

Recent changes in staff turnover has led to more flexible Specialist Requestor (SR)/ Specialist Nurses (SN) rota cover, with a whole team approach that can impact performance SR monitoring. There are also plans for Practice Development Specialists and Team Managers to shadow more SR/SN family approach conversations.

Living kidney donation: REACH Transplant and renal units staffing levels

Jen Lumsdaine announced that all REACH Transplant nurses would be in post by the end of March and Orla Hobson, the REACH Transplant programme lead, is running the induction programme and adjusting the training based on the needs of the nurses who have successfully taken up the posts. She noted that there had already been positive feedback about the programme.

Jen noted that this work was almost completed and data should be available by the end of March 2024.

Sustainable, patient-centred transplant services

John Casey noted that this was quite a broad recommendation and would be where the work being done by the OUG will help inform implementation of this recommendation. The Renal Collaborative is meeting regularly and the COVID planning group has been rebranded to discuss common issues and challenges within transplant services. The planned work of the Strategic Network will also assist in moving this work forward.

Equity of access to transplantation services

Shona Methven noted that getting information about equity of access has proven to be very challenging and they have spent some time examining the data that is available. Unfortunately, they have found it difficult to define the potential pool of people eligible for transplants. They have been supporting a research application to the Chief Scientist Office, which is a national linkage study, looking at kidney transplantation, from which they hope there will be lessons learned to provide a starting point for other solid organs.

Looking at short term actions that can be taken forward more immediately, Shona and Andy will draft a letter, on behalf of SDTG, to go to NHS Boards to highlight actions that can be taken to help improve referral for transplantation. A copy of the draft letter and existing referral data and variations across NHS Boards will be presented at the next meeting.

Jen Lumsdaine suggested that it would be worth having a discussion with Shona and Andy, with regards to the REACH Transplant work, which may assist in providing data for patients who are pre-dialysis.

Mark Print felt that there were opportunities to demonstrate the positivity of referring patients for transplant at the earliest opportunity by raising awareness with clinicians through the sharing of patient stories.

Aftercare for transplant patients

Lesley Ross reported that they were very close to finalising the patient survey Linda White said that the next step was to upload the survey onto Citizen Space, an online consultation and survey system used by the Scottish Government, which should be completed by the middle of April. The survey will run for 12 weeks and paper and other accessible versions of the survey will be available upon request.

Roseanne McDonald suggested that it might be helpful to do a test run through of the survey with a transplant recipient. Lesley had already considered this and plans to approach Mark Print to ask for his assistance with this task.

Clinicians have the right expertise to support patients locally

Colin Geddes noted that he and Radha Sundaram are focussed on finding out how transplant centres, primary care and secondary care currently interact with each other. They plan to run focus group sessions and are developing a survey as well as considering how best to host, distribute and analyse the information they gather, with help from the Scottish Government policy team.

Research and innovation

The Minister for Public Health, Women’s Health and Sport has approved the funding for the Scottish Transplant Research Manager post for 2023/24, with the intention to continue funding this post for a further two years. Sam Baker has written to Adam Duncan-Rusk, NHS Lothian and Stephen Wigmore, University of Edinburgh to confirm the arrangements for the advertisement of the job role.

Susan Hannah provided a brief update on work that is currently being undertaken by the Research Clinical Lead for Organ Donation (CLOD) for Scotland, Kathryn Puxty, that aims to improve donation numbers.

Post-2020 plans

UK strategy update

Anthony Clarkson noted that planning is currently underway for the next financial year, with a particular focus on authorisation and organ utilisation initiatives. With regards to budgets, NHSBT are still confirming 2023/24 funding with the Department of Health and Social Care (DHSC), for items such as Donation after Circulatory Death (DCD) Hearts, Normothermic Regional Perfusion (NRP) and Clinical Leads for Utilisation (CLUs).

Update on donation/ transplantation activity

Living kidney donation

Jen Lumsdaine noted that living donation numbers have still not reached pre-pandemic levels. Over the last few months, there has been a significant amount of awareness raising of living donation, through case studies and social media, which has seen an increase in the downloading of information leaflets and the health-check questionnaires from the Organ Donation Scotland website. There has been a good response in relation to the recruitment of Independent Assessors and work is underway to ensure a good balance of Independent Assessors across Scotland.

Paediatric transplantation

Ben Reynolds stated that paediatric kidney transplants were still higher than usual numbers compared to previous years. He announced that they had recently celebrated their 300th transplant within the service.

Iain Macleod asked if REACH Transplant also covered paediatrics. Jen Lumsdaine said that discussions were taking place with the paediatric teams to see how REACH Transplant can work for children.

Deceased organ donation

Susan Hannah noted that there had been an increase in organ donation numbers, with a 27% increase in comparison to last year.

National Organ Retrieval Service (NORS) activity

Chris Johnston gave a brief presentation on NORS activity. Peter Wyman asked that Chris share a copy of the presentation with NHSBT to allow them to demonstrate the importance of funding NRP.

Tissue Donation

Sharon Zahra noted that the tissue donation referral rate remains lower than pre-pandemic levels. She also advised that live bone donation remains problematic and they have initial indications of clinical usage outstripping donation rate. SNBTS is working in collaboration with different hospitals to re-instate bone donation in hospitals who suspended donation during the COVID-19 pandemic. In relation to the anticipated changes to donor assessments, the SaBTO recommendations re FAIR III are continuing to be progressed with draft changes being prepared and discussed for the JPAC guidelines. This work is currently ongoing.

Any other business

Iain Macleod suggested that the August SDTG meeting be held in person in Edinburgh, and that it would not offer a hybrid option for attendance.  Members of the group agreed that it would be helpful to meet face to face.

Written updates

Iain Macleod referred the group to the written updates circulated with the papers.

Next meeting

The next meeting will take place on 17 August at 14:00, at St Andrews House, Regent Road, Edinburgh, EH1 3DG.

Action points

Action 1:

SDTG to receive further update on the work of the OUG Implementation group at the August meeting – Andrew McKie, Scottish Government

Action 2: 

Copy of NORS presentation to be sent to Peter Wyman – Chris Johnston, Golden Jubilee

Papers

Written updates