Scottish Donation and Transplant Group meeting: August 2024

Attendees and apologies

Attendees

• 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 (SG)
• Dr Andrew Bathgate, Consultant Hepatologist, NHS Lothian
• Ms Lisa Burnapp, Associate Medical Director, National Health Service Blood and Transplant (NHSBT)
• Ms Elaine Campbell, PJ Foundation
• Mr Peter Croan, Associate Director Quality and Performance, National Services Division (NSD)
• Dr Simon Cuthbert-Kerr, Deputy Director, Public Health Capabilities, SG
• Dr Jonathan Dalzell, Consultant Cardiologist, Golden Jubilee National Hospital (GJNH)
• Mr George Gordon, NHS Lothian Organ and Tissue Donation Committee (ODC) Chair/Scotland Regional ODC Chair
• Susan Hannah, Regional Manager for Scotland, NHSBT
• Neil Healy, Lead Nurse for Tissues, Cells, and Advanced Therapeutics, Scottish National Blood Transfusion Service (SNBTS)
• James How, Blood, Tissue and Organ Donation Team Leader, SG
• Jen Lumsdaine, Living Donor Co-ordinator, NHS Lothian
• Professor Derek Manas, Medical Director, NHSBT
• Dr Neal Padmanabhan, Consultant Nephrologist, NHS Greater Glasgow and Clyde
• Mark Print, Patient representative
• Dr Lesley Ross, Patient representative
• Mr John Stirling, Head of Operations, NHSBT
• Dr David Turner, Consultant Clinical Scientist, SNBTS
• Linda White, Policy Manager, Organ and Tissue Donation and Transplantation, SG
• Ms Claire Williment, Accountable Executive, Organ Utilisation Programme

Guests

• Joanne Brooks, NHSBT Scotland Team Manager
• Angelica Cabello Araujo, Scottish Transplant Research Network Manager
• Kirstin Robertson, Portfolio Manager for Specialist Services and National Planning, NSD
• Scott McVean, Research Officer, Scottish Government
• Debbie Smith, Senior Marketing Manager, Scottish Government
• Eoghan Smith, Trainee Representative in Organ Donation

Apologies

• Dr Pauline Austin, Consultant in Anaesthesia and Intensive Care Medicine, NHS Tayside
• Lynne Ayton, Director of Operations Heart, Lung and Diagnostics Division, GJNH
• Jo Farrar, Chief Executive, NHSBT
• Dr Colin Church, Consultant, GJNH
• Anthony Clarkson, Director of Organ Donation and Transplantation, NHSBT
• Adam Duncan-Rusk, Business Manager, NHS Lothian
• Amanda Forbes, Scottish National Heart Failure Service Manager, GJNH
• Dr Colin Geddes, Chair of the Transplant Recipient Support and Aftercare working group, NHS Greater Glasgow and Clyde
• Dr Ann-Margaret Little, Consultant Clinical Scientist, NHS Greater Glasgow and Clyde
• Dr Shona Methven, Consultant Nephrologist and Renal Service Clinical Director
• Jessica Porter, Head of Regulation, Human Tissue Authority
• Chris Johnston, Consultant Transplant Surgeon/ NORS Representative, NHS Lothian
• Dr Martin Johnson, Consultant Physician, Golden Jubilee National Hospital
• Dr Ben Reynolds, Consultant Paediatric Nephrologist, NHS Greater Glasgow and Clyde
• Moira Straiton, Associate Director – Specialist Services and National Planning, NSD
• Dr Radha Sundaram, ICU Consultant and Clinical Lead for Organ Donation (CLOD), Co-chair of the Transplant Recipient Support and Aftercare working group, NHS Greater Glasgow, and Clyde
• Dr Helen Tyler, Regional CLOD and Consultant in Anaesthetics and Intensive Care Medicine, NHS Forth Valley
• Dr David Walbaum, Consultant Nephrologist, NHS Grampian
• Peter Wyman, Chairman, NHSBT
• Dr Sharon Zahra, Clinical Lead, Tissues, Cells, and Advanced Therapeutics, SNBTS

Items and actions

Welcome, introductions, and apologies

Iain Macleod welcomed attendees to the meeting. In particular, he welcomed Scott McVean to present on agenda item 3.1, Angelica Cabello Araujo to present on agenda item 4.3, Kirstin Robertson to present on agenda item 5, and Debbie Smith to present on agenda item 8.2.  He also welcomed Joanne Brooks and Eoghan Smith who were observing the meeting.

Iain also welcomed Elaine Campbell, from the PJ Foundation, to her first SDTG meeting, representing donor families and recipients.

It was noted that this was Susan Hannah’s last SDTG meeting before her early retirement. Iain thanked Susan for her valued contribution to SDTG and organ donation during her lengthy career.

Minutes of meeting of 25 April 2024

The note of the previous meeting was agreed, although they would be updated to confirm that David Turner did attend the meeting.

Iain referred to the actions from the previous meeting and advised these would be discussed at each relevant agenda point during the meeting.

Evaluation of the opt out system 2023-24

Evaluation of the opt out system 2023-24

Scott McVean provided an overview of the evaluation of the opt out system conducted in 2023/24, two years after implementation. He went on to outline his research approach during the last year which included gathering the views of the workforce and public.

Nineteen interviews were conducted with a range of staff involved in the donation process and 117 responses were received to a survey of NHS staff involved in the donation process that asked them about their confidence levels on different areas of practice in relation to the opt out system.

On gathering information about public attitudes, Scott advised that a Citizen Panel survey asked 663 respondents' opinions on a range of statements about organ and tissue donation after death, including awareness of the opt out system and how to register their donation decision.

In terms of next steps, it was noted that due to the current Scottish Government financial constraints, the published version of the evaluation report had been put on hold. Scott agreed to share a paper summarising the evaluation findings with policy colleagues. Members of the group felt that it would be useful for this paper to be shared with external stakeholders. Scott agreed to consider this.

A slide pack of the most recent data from NHS Blood and Transplant (NHSBT) and the Scottish National Blood Transfusion Service (SNBTS) will be prepared annually.

At the end of the five-year monitoring and evaluation period in 2026, it is the intention to carry out a similar study with NHS staff involved in the donation process and prepare an evaluation report.

Donation and Transplantation Plan: 2021-2026 implementation

Guidance for referring renal units on recommended staffing levels

Jen Lumsdaine outlined the findings from her work with Dr Walbaum with referring Renal Units and Transplant Centres to identify recommended staffing levels to support living donation for differing levels of patient populations. The main focus was on the living donation co-ordinators and nephrologist staffing groups.

It was noted that improving equity of access to living donor transplantation will improve living donor numbers; however additional time and resource are often required to support those harder to reach groups throughout the process and increasingly complex donors depend on other specialties for additional donors tests; adding to the length of time a donor assessment takes.

The NHSBT living donor workforce calculator was used to provide an indication of the recommended staffing levels to maintain the current service. The current service recommendations are based on 100 living donor transplants in Scotland per year, with modelling also allowing for a 50% increase to 150 living donor transplants going forward.

Ensuring adequate staffing levels is key to improving the access to living donor transplantation in Scotland and as a result of this work, it is proposed that the workforce planner recommendations are sent to the renal units requesting that they ensure future planning of co-ordinator and specialist nurse staffing, allowing both for an increase in living donor transplants and also supporting those harder to reach groups.

In addition, renal units will be made aware of the financial savings to Boards from living donor transplantation and that this should accompany any staffing business cases for referring units. Renal units will also be asked to monitor and report the impact of increasing numbers and support required.

A key recommendation in the guidance is to review the clinical time spent on reimbursement of loss of earnings and travel and Jen will discuss the potential for social work or other involvement going forward with National Services Division (NSD) as well and linking in with the review of the donor reimbursement exercise currently underway in England to ensure consistency in practice.

The review and input of consultant nephrologists into living donor programmes was completed by Dr Walbaum and two surveys were circulated between 2023 and 2024 to gather views from these consultants. The results concluded that currently nephrology input continues not to be a limiting factor, but the majority of units would require further input if there were to be a 50% increase in living donor transplants.

The Living Donor Transplant Co-ordinator is an integral part of the workforce delivering living donor transplantation across Scotland, however there is variation within the role.  In order to ensure consistency, a new competency framework for Living Donor Transplant Co-ordinators is proposed.

SDTG agreed that these competencies should be implemented in Scotland and that Jen should write to renal units to advise that these new competencies will be introduced for Living Donor Transplant Co-ordinators.

Transplant patient survey

Lesley advised that she has completed the draft survey report, and it is currently in design phase. The final report will be presented at the December SDTG meeting.

Work is also underway to identify what information and advice various charities have on their websites to support transplant recipients, with a view to working with these charities to discuss how we can help them, where relevant, to improve this information and signpost to other trusted advice and support.

Scottish Transplant Research Network (STRN)

Angelica provided an overview of the objectives of the STRN which were to facilitate research and collaboration in the field of donation and transplantation and increase network reach. The first STRN webinar is planned for the end of August and bi-monthly webinars are being planned.

A STRN webpage has been included on the NHS Research Scotland website and various social media channels are now available for the network.

National Services Division (NSD) update

Kirstin advised on the business cases that had recently been endorsed, on a recurring basis, by the National Specialist Services Committee and funded by the SG.

She referred to the ongoing proactive performance monitoring and reporting that NSD have in place, including dashboards, quarterly meetings with services, and commissioning plans for each service (activity, financial analysis, key actions, risks and issues) and then touched on NSD’s process and outcome measures which are being added to Service Agreements to better understand performance, outcomes and facilitate benchmarking.

In the short to medium term, NSD’s focus will be on:

• Workforce Planning, Psychology - comparing resources across services and seeking information from NHS England. NSD have asked services to update websites with more up to date information for patients.
• Islet Cell Transplant service review has been identified for an NSD review in 2025 and a summit is planned.
• East of Scotland – re-profiling work looking at aspects of the pathways and associated cost; this work is underway commencing with the Liver Transplant service initially.
• Living donor renumeration policy is shortly due for review.
• Perfusion - NSD are expecting business cases from NHS Greater Glasgow and Clyde and NHS Lothian to go forward for funding consideration and prioritisation for 2025/26.

NSD will move to a new Portfolios of Care Delivery Model from October 2024 and are in the process of configuring their organisational structure, services and networks to fit the new portfolios.

The aim is to create a new shared and mutually beneficial approach to develop and improve National Services, optimising delivery for the people of Scotland in a changing NHS system. This will support increased planning in across the wider health system, including a focus on whole population needs.

Dave Turner highlighted that as a result of the transition from the In Vitro Diagnostics Directive to the In Vitro Diagnostic Regulations (IVDR), anticipated in July 2025, it is expected that this will lead to an increased cost per test of HLA antibody specificity Single Antigen Bead (SAB) testing. Kirstin advised that she would discuss this with Dave outwith the meeting to assess the impact of this change.

NSD will work with the Scottish Government policy team to consider mapping out a three – five-year Transplantation Strategy.

As part of this Strategy, consideration should be given to the NHSBT Sustainability and Certainty in Organ Retrieval (SCORE) Programme and the way transplant is delivered in future, in particular the impact the proposed ‘Planned Arrival Window’ for organ retrievers will have on transplantation.

Agenda for Change – reduction in working week hours

With regards to the change in working hours from 37.5 hours to 36 hours, with the first reduction of 30 minutes from 01 April 2024, and the remaining reductions at a later date, Iain asked members whether they felt there were any risks around transplantation services or any other challenges teams were facing as a result of this initial reduction.

It was noted that there was no current immediate impact on transplant services in Scotland; however, it was felt that there could be bigger implications on services once the full reduction in hours is implemented.

Implementation Steering Group for Organ Utilisation (ISOU)

Claire provided an update on the work of the ISOU and advised that the group had established the following subgroups - Histocompatibility and Immunogenetics, Xenotransplantation, Trust Engagement, Patient Engagement and Assessment and Recovery Centres with all delivering distinct work programmes and with Co-chairs and membership that represent leading experts from the relevant subject areas.

A Stakeholder Forum, which meets four times a year after every ISOU meeting, has also been established to ensure key stakeholders (including patients and clinicians) can steer the implementation activities and remain engaged as the work progresses.

Claire also updated on the ISOU Cardiothoracic Information Collation Exercise (CT ICE) whereby NHS England has been commissioned to undertake a comprehensive review of cardiothoracic services to ensure that services in place are sufficiently sustainable and resilient and are able to provide the best possible outcome for patients. Two surveys (of the patient and clinical communities) were undertaken as part of the exercise. Six hundred and sixteen survey responses were received, and the findings will be used to inform the review.

Any Other Business

Duty to Report Transplant-related Crimes Regulations

James How advised that consideration was being given to the new Regulations in Scotland. Following a consultation event in June, SG was currently exploring the suggestion that clinicians should report any overseas transplants or cases of suspicions of a transplant-related crime to their NHS Board. The NHS Board would then have the duty to report those suspicions to the Human Tissue Authority (HTA). In England, Wales and Northern Ireland the duty is on the clinician to report directly to the HTA. If the policy on this is agreed, the aim was still to lay Regulations by the end of the year.

Organ and Tissue Donation Week 2024

Debbie advised that due to the ongoing Scottish Government financial constraints, there was not yet agreed funding available for paid-for marketing this year. However, it was the intention to look at no-cost options for raising awareness of organ and tissue donation during Organ and Tissue Donation Week 2024.

Susan Hannah highlighted that all of the Organ and Tissue Donation Committees and NHS Board Communications Teams had good plans for the Week and she gave an update on some of the NHSBT initiatives for the Week, including Turning the Peaks Pink, Race for Recipients, lighting-up buildings pink and working with recipient co-ordinators to source more case studies. She also highlighted that the PJ Foundation would have a key role in awareness raising and supporting donor families.

Written Updates

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

Next meeting

The next meeting will take place on 12 December 2024, 14:00 to 16:00, and will be a Microsoft Teams meeting.

Summary of Action Points

Action 1: Scott to develop summary overview paper outlining the findings of the evaluation and share with policy colleagues, and to consider if this paper can also be shared with external stakeholders.

Action 2: Jen to share the guidance on resourcing with the Renal Units and advise them of the new competencies for Living Donor Transplant Co-ordinators.

Action 3: Kirstin and Dave to discuss cost implications of the transition from the In Vitro Diagnostics Directive to the In Vitro Diagnostic Regulations (IVDR)

Papers

Written updates