Scottish Donation and Transplant Group meeting: April 2024

Attendees and apologies

• Mr John Casey (Co-chair), Joint Chair and Clinical Advisor for Transplantation in Scotland
• Dr Iain Macleod (Co-chair), Joint Chair and Clinical Advisor for Organ Donation in Scotland
• Mr John Asher, Consultant Renal Transplant Surgeon, NHS Greater Glasgow and Clyde
• Dr Pauline Austin, Consultant in Anaesthesia and Intensive Care Medicine, NHS Tayside
• Sam Baker, Donation Policy Branch Head, Scottish Government
• Dr Andrew Bathgate, Consultant Hepatologist, NHS Lothian
• Amanda Forbes, Scottish National Heart Failure Service Manager, Golden Jubilee University Hospital
• Mr George Gordon, NHS Lothian Organ 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, SNBTS
• James How, Blood, Tissue and Organ Donation Team Leader, Scottish Government
• Dr Martin Johnson, Consultant Physician, Golden Jubilee National Hospital
• Chris Johnston, Consultant Transplant Surgeon/ NORS Representative, NHS Lothian
• Jen Lumsdaine, Living Donor Co-ordinator, NHS Lothian
• Andrew McKie, Secretariat, Scottish Government
• Mark Print, Patient representative
• Dr Lesley Ross, Patient representative
• Dr Radha Sundaram, ICU Consultant and CLOD, Co-chair of the Transplant Recipient Support and Aftercare working group, NHS Greater Glasgow, and Clyde
• Moira Straiton, Associate Director – Specialist Services and National Planning, NSD
• Dr David Turner, Consultant Clinical Scientist, SNBTS
• Linda White, Policy Manager, Organ and Tissue Donation and Transplantation, Scottish Government
• Dr Sharon Zahra, Clinical Lead, Tissues, Cells, and Advanced Therapeutics, SNBTS

Guests

• Cara Murdoch, Lead Nurse for Scotland, NHSBT
• Rachel Thomas, Clinical Lead for Organ Utilisation (CLU), NHS Lothian

Apologies

• 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
• Anthony Clarkson, Director of Organ Donation and Transplantation, NHSBT
• Mr Peter Croan, Associate Director Quality and Performance, NSD
• Dr Simon Cuthbert-Kerr, Deputy Director, Public Health Capabilities
• Dr Jonathan Dalzell, Consultant Cardiologist, Golden Jubilee National Hospital
• Adam Duncan-Rusk, Business Manager, Renal, Transplant and Dermatology
• Jo Farrar, Chief Executive, NHSBT
• 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
• Professor Derek Manas, OTDT Medical Team: Associate Medical Director
• Dr Shona Methven, Consultant Nephrologist and Renal Service Clinical Director
• Dr Neal Padmanabhan, Consultant Nephrologist, NHS Greater Glasgow and Clyde
• Jessica Porter, Head of Regulation, Human Tissue Authority
• Dr Ben Reynolds, Consultant Paediatric Nephrologist, NHS Greater Glasgow and Clyde
• John Stirling, Head of Operations, NHSBT
• 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

Items and actions

Welcome, introductions, and apologies

John Casey welcomed attendees to the meeting. In particular, he welcomed Rachel Thomas who was attending the meeting to present on agenda item 4 and Cara Murdoch who was observing the meeting, in her role as NHSBT Scotland team manager.

Minutes of meeting of 14 December 2023

The note of the previous meeting was agreed.

John provided a brief update on the completed actions from the previous meeting. With regards to the action relating to influencing the treatment time guarantees for living donor/recipients, it was noted that this work was still ongoing.

John noted that Claire Williment was unable to attend this meeting and has provided a written update on the Implementation Steering Group for Organ Utilisation for information.

Donation and Transplantation Plan: 2021-2026 implementation

Transplant Patient Survey findings

Lesley Ross presented a detailed overview of the results from the Transplant Patient Survey, providing background on the working group and the development and administration of the survey.

This survey was undertaken to further explore the feedback received from the National Services Division (NSD) patient survey undertaken in 2020 and the subsequent NSD patient focus groups held in 2022.

Respondents were invited to complete the survey online via Citizens Space, the Scottish Government’s survey tool, and paper copies were also made available. To ensure accessibility, an Easy Read version of the survey was produced, and it was also translated into six languages.

The survey was open for fourteen weeks, between 25 September and 29 December 2023. To raise awareness of the survey, letters were sent to all Transplant Units and numerous charities, and it was also promoted on social media channels. Overall, 569 responses were received, with 188 being submitted online and 381 via paper copies. Lesley thanked the transplant co-ordinators for their support in distributing the survey to their patients, which was demonstrated by 67% of paper responses being returned.

Responses were received across all ages and genders, and there was a good geographical distribution of responses, which meant that the survey provided a good picture of patient feedback in both urban and rural areas across Scotland. There was also a good response across the different organs, although only a few responses were returned from lung transplant recipients. It was felt that this was likely due to the service being based in NHS England and the difficulty to reach out directly to these recipients.

Overall, the majority of responses were largely positive, however some respondents felt that more could be done to improve online communication and education, and some said that they would have benefited from more psychological and emotional support post-transplant. It was agreed that the data relating to psychological/emotional support should be analysed by organ type to identify specific areas that need improvement, as support for some transplant recipients may differ from organ to organ.

It was highlighted that many online resources focused more on pre-transplant and less on post-transplant advice and support and that there potentially could be some confusion from patients as to where information on non-NHS websites was from and how accurate and up to date it was. With regards to heart recipients, the Golden Jubilee National Hospital had recently restarted their face-to-face support cafes, which were being held every quarter and were supported by their psychologists. It was also noted that the NHSBT website has a range of useful patient information and that this could be better signposted from other patient websites.

John Casey thanked Lesley for her work, commenting on how largely positive the feedback was and where the of areas of improvement were required.

Regarding next steps, it was agreed that a report outlining the findings and recommendations of the survey would be developed. Further work was also required to analyse the data by organ type and further consideration is to be given on how best to signpost the NHSBT patient information and how online communication and education could be improved. Finally, as part of the commissioning process, NSD need to consider areas such a psychological support and online information for transplant patients.

Clinicians have the right expertise to support patients locally

Radha Sundaram provided a brief summary of the work to take forward this recommendation and advised that six focus groups have been held to date: four with cardiology clinicians, one with hepatology clinicians and one with nephrology clinicians.

Outcomes from the focus groups showed that, generally, patients felt the local support was good, and that they preferred having their follow-up appointments at the transplant units or for kidney patients with local nephrologists. With regards to psychological support, it was felt that this was variable for transplant patients.

John Casey noted that there appeared to be some overlapping themes from these outputs and with the findings from the patient survey, which will be discussed at the next working groups co-chairs meeting in mid-May.

Organ utilisation

Rachel Thomas, Consultant Renal and Pancreas Transplant Surgeon at the Edinburgh Royal Infirmary and Clinical Lead for Organ Utilisation (CLU), presented on the Organ Utilisation Project. The project began in 2021, with the aim of reducing disparity between donation and transplant numbers to understand links between donation and organ acceptance and to provide national support to units to help improve organ utilisation to increase more transplants.

The CLUs regularly meet with their colleagues across the country to share action plans, collaborate on projects to explore main barriers to organ utilisation and to reflect on the reasons for organ declines.

John Casey noted that as part of its final report, the Implementation Steering Group for Organ Utilisation had suggested writing out to transplant units in England, to suggest that they establish data driven organ utilisation strategies. Although this was a recommendation for NHS England, he suggested it was worth considering a similar approach in Scotland.

Iain Macleod commented that it would be helpful to consider a wider organ utilisation strategy for Scotland, with goals which set out our aspirations for organ utilisation in five to ten years. John Casey agreed, noting that would need to be looked at as part of the commissioning process with NSD.

National Services Division (NSD) – Strategic plans for 2024/25

Moira Straiton presented on NSD’s strategic plans for 2024/25, and outlined the complexities of the commissioning process, including the recent changes to governance arrangements whereby all proposed services go through the NHS Scotland Strategic Planning Board and the NHS Scotland Planning and Delivery Board, which link in with NHS Board Chief Executives’ Group.

NHS National Services Scotland (NSS) have moved to a more proactive means of performance monitoring in order to provide a better understanding of performance and outcomes, with the overall goal to provide better, more cost-effective services.

Moira advised that NSD would support perfusion services, however any case for recurring funding would have to go through the NSS prioritisation process and a further business case from NHS Lothian is required to be returned by end July 2024 to allow it to be considered in the annual cycle.

2023/24 UK position

Susan Hannah provided the update on behalf of Anthony Clarkson, who was unable to attend the meeting, announcing the appointment of three Non-Executive Directors to the NHSBT Board.

Despite a 17% reduced donor pool, the year finished with approximately 1,510 donors, against a target of 1,521. Around, 3,712 transplants were facilitated against a target of 3,815, demonstrating that donation figures have returned to 95% of pre-COVID donation activity and 99% of pre-covid transplant activity.

Susan also noted the recent marketing initiatives, which include the UK Passport renewal campaign and SpecSavers partnership, which saw 1,000 hits to the website in the first week. She confirmed that Organ and Tissue Donation Week would take place between 23 and 29 September 2024, celebrating 30 years of the NHS Organ Donor Register.

Deceased organ donation – Scotland

Susan Hannah presented on the Scottish deceased donation figures for 2023/24, sharing the current trends. She highlighted that last year’s figures showed a return to pre-pandemic levels of donation. It was also noted that the eligibility for donation has increased, which is not the case in the rest of the UK. Referral rates in Scotland were also slightly higher in comparison to the rest of the UK.

Figures show that Scotland was averaging out at approximately ten donors per month. Specialist Nurse and Specialist Requestor presence when approaching families of potential donors was 89%, which is slightly lower than the UK average.

Susan expressed her thanks to all the units for all the work being done by the donation teams.

Any other business

Chris Johnston referred to the written update he had provided on the National Organ Retrieval Service (NORS) activity, providing a brief summary on retrieval numbers.

He highlighted that there has been a lot of positive change to transplantation in recent years due to the use of novel technologies such as Normothermic Regional Perfusion (NRP), (which is used to recondition organs, such as livers, which might not otherwise have been used without being perfused). This technique has led to an increase in the number of transplantations and overall positive outcomes for transplant patients. Therefore, the landscape of transplantation has shifted and recurrent funding for NRP, including having the full quota of staff to operate the technology is required.

He noted that OrganOx plays a different role to NRP as it increases the viability of livers for transplantation, managing them safely for up to 24 hours. Its use leads to more safe liver (and multi-organ) transplants. He highlighted the need to support OrganOx, as it allows for more flexibility for transplantation and would allow for transplants to take place during the day. However, confirmation of ongoing funding for OrganOx has not been confirmed and this has led to the service being suspended.

John Casey agreed, saying that more clarity was needed at present as to how perfusion staff are funded, particularly stressing that direct funding would be more helpful. Moira Straiton suggested discussing this in more detail out with the meeting.

Written updates

John Casey referred the group to the written updates circulated with the papers.

Next meeting

The next meeting will take place on 22 August 2024, 14:00 to 16:30, and will be a Microsoft Teams meeting.

Summary of Action Points

Action 1: Linda White and Linda Ross to develop Transplant Patient Survey Report outlining the findings and recommendations of the survey

Action 2: Data relating to psychological/emotional support to be analysed by organ type by Linda White and Lesley Ross - Linda White, Scottish Government/ Lesley Ross, Patient Representative

Action 3: Linda White and Linda Ross to consider how online communication and education can be improved and how to best to signpost NHSBT online patient information

Action 4: As part of the commissioning process, NSD to work with services to consider options to increase emotional/psychological support for patients’ post-transplant and ensure all transplant services review their websites to include clear and up to date information for transplant patients

Action 5:  Linda White to include overlapping themes from working groups in the agenda for the Co-chairs Meeting in May 2024 - Linda White, Scottish Government

Action 6: NSD to consider developing an organ utilisation strategy as part of the commissioning process

Action 7: Discussion to take place between NSD, NHSBT and John Casey on how perfusion staff are funded going forward

Papers

Written updates