Scottish Donation and Transplant Group minutes: December 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 (NHS GGC)
• Dr Pauline Austin, Consultant in Anaesthesia and Intensive Care Medicine, NHS Tayside
• Sam Baker, Donation Policy Branch Head, Scottish Government (SG)
• Dr Andrew Bathgate, Consultant Hepatologist, NHS Lothian
• Anthony Clarkson, Director of Organ Donation and Transplantation, NHS Blood and Transplant (NHSBT)
• Amanda Forbes, Scottish National Heart Failure Service Manager, Golden Jubilee National Hospital (GJNH)
• Mr George Gordon, NHS Lothian Organ and Tissue Donation Committee (ODC) Chair and Scotland Regional ODC Chair
• 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
• Chris Johnston, Consultant Transplant Surgeon and NORS Representative, NHS Lothian
• Jen Lumsdaine, Living Donor Co-ordinator, NHS Lothian
• Harpreet Matharu, Regional Manager for Scotland, NHSBT
• Kirstin Robertson, Specialist Services and National Planning, National Services Directorate (NSD)
• Dr Lesley Ross, Patient Representative
• Dr Matthew Saunders, Public Health Consultant, Public Health Scotland
• Dr Radha Sundaram, ICU Consultant and Clinical Lead for Organ Donation (CLOD), (NHS GGC)
• Dr David Turner, Consultant Clinical Scientist, SNBTS
• Linda White, Policy Manager, Organ and Tissue Donation and Transplantation, SG
• Peter Wyman, Chairman, NHSBT

Guests

• Linda Blake, PJ Foundation
• Sumrah Chohan, Transplant Manager, Human Tissue Authority
• Mr Christopher Cuffe, Service Manager, Cardiothoracic Surgery, Freeman Hospital
• Mr Vamsidhar Dronavalli, Clinical Director, Cardiothoracic Surgery, Freeman Hospital
• Colin Faichnie, NHSBT Scotland Team Manager
• Orla Hobson, Programme Lead, REACH Transplant
• Helen McDaniel, Deputy Branch Head, Health Ethics, Department of Health and Social Care (DHSC)
• Ms Karen Stevenson, Consultant Transplant Surgeon, NHS GGC

Apologies

• Lynne Ayton, Director of Operations Heart, Lung and Diagnostics Division, GJNH
• Elaine Campbell, PJ Foundation
• Jo Farrar, Chief Executive, NHSBT
• Mr Peter Croan, Associate Director Quality and Performance, NSD
• Dr Simon Cuthbert-Kerr, Deputy Director, Public Health Capabilities, SG
• Dr Jonathan Dalzell, Consultant Cardiologist, GJNH
• Adam Duncan-Rusk, Business Manager, NHS Lothian
• Dr Martin Johnson, Consultant Physician, GJNH
• Professor Derek Manas, Medical Director, NHSBT
• Dr Ann-Margaret Little, Consultant Clinical Scientist, NHS GGC
• Dr Gerard Meachery, Consultant in Respiratory and Transplant Medicine, Freeman Hospital
• Dr Shona Methven, Consultant Nephrologist and Renal Service Clinical Director, NHS Grampian
• Dr Neal Padmanabhan, Consultant Nephrologist, NHS GGC
• Mark Print, Patient representative
• Jessica Porter, Head of Regulation, Human Tissue Authority
• Dr Ben Reynolds, Consultant Paediatric Nephrologist, NHS GGC
• John Stirling, Head of Operations, NHSBT
• Moira Straiton, Associate Director, Specialist Services and National Planning, NSD
• Dr Helen Tyler, Regional CLOD and Consultant in Anaesthetics and Intensive Care Medicine, NHS Forth Valley
• Dr David Walbaum, Consultant Nephrologist, NHS Grampian
• Claire Williment, Accountable Executive, Organ Utilisation Programme
• Dr Sharon Zahra, Clinical Lead, Tissues, Cells, and Advanced Therapeutics, SNBTS

Items and actions

Welcome and introductions

John Casey welcomed attendees to the meeting. In particular, he welcomed Harpreet Matharu, Regional Head of Nursing, London and Scotland Organ Donation Teams and Dr Matthew Saunders, Consultant in Public Health Medicine, Public Health Scotland to their first SDTG meeting.

He also welcomed Mr Vamsi Dronovalli, Clinical Director, Cardiothoracic Surgery, Freeman Hospital and Mr Chris Cuffe, Service Manager, Cardiothoracic Surgery, Freeman Hospital who were attending on behalf of Dr Gerard Meachery, Consultant in Respiratory and Transplant Medicine, Freeman Hospital who was unable to attend the meeting. 

In addition, he welcomed Helen McDaniel, Deputy Branch Head, Health Ethics, Department of Health and Social Care to present on agenda item three, Karen Stevenson, Consultant Transplant Surgeon, Glasgow to present on agenda item 4.2 and Orla Hobson, REACH Transplant Programme Lead to present on agenda item 4.3.

He also welcomed Colin Faichnie, NHSBT Scotland Team Manager to observe the meeting.

Minutes of meeting of 22 August 2024

The note of the previous meeting was agreed as an accurate record.

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

Implementation Steering Group for Organ Utilisation (ISOU)

Helen McDaniel provided an update on the work of the ISOU and the various sub groups:

• The Histocompatibility and Immunogenetics sub group and the Assessment and Recovery Centres (ARCs) sub group presented their final recommendations to the ISOU in early December 2024.  Next step is for the recommendations from these sub groups to be submitted to DHSC Ministers and, if approved, they will be published on the DHSC website.   DHSC is giving further consideration to funding for the ARCs as part of their spending review bid.
• The Patient Engagement sub group is bringing together their findings and will report to ISOU in February 2025.
• The Trust Engagement group is currently designing a framework to maximise organ utilisation and will report to ISOU in February 2025
• The Xenotransplantation sub group is currently finalising its recommendations, which have been based on research carried out on public perceptions of xenotransplantation.

Helen also advised that a Transplant Oversight Group had been set up to oversee the implementation of the recommendations from the sub groups. This group will be co-chaired by NHSBT and NHS England. 
Donation and Transplantation Plan: 2021-2026 implementation

Donation and Transplantation Plan for Scotland annual progress report

Linda White provided an overview of the progress towards implementing the recommendations from the 2021-2026 Scottish Donation and Transplantation Plan in the last year and advised that 14 of the 21 recommendations are now effectively complete, with regular monitoring and review in place for some of the 14 recommendations. Seven recommendations are ongoing.  This annual progress report will be submitted to the Minister for Public Health and Women’s Health for information and published on the Scottish Government website with the minutes from this meeting.

Timely transplantation

Ms Karen Stevenson provided an update on the work of the short term working group to explore barriers to timely transplantation in Scotland, including pre-emptive living donor transplantation and timely listing for deceased donor transplantation. A particular focus of the group has been on the differences in the Scottish Index of Multiple Deprivation (SIMD) pre-emptive rates, which continue to display disparities in access for those in a lower socio-economic group (SIMD 1 and 2).

She advised that the benefits of both living donor kidney transplantation and listing for deceased donor transplant before starting dialysis are well recognised. Despite this, rates have remained relatively static throughout many units in the UK and, as a result, there are increased numbers of patients starting and then spending longer on haemodialysis.

The working group has focused on a common data set for the financial year 2023-24 covering referral, activation and transplant, deceased donation and living donation rates, pre-emptive status and SIMD, ethnicity and Body Mass Index.

Karen presented the results of the data and reported on the variation that exists in transplant referrals, processes and outcomes and the difference in the rates of pre-emptive referral, registration as well as the greater need for transplant for those living in areas of increased deprivation.

She advised that as a next step there would be ongoing data collection to ensure that recipient SIMD and pre-emptive status can be monitored effectively and that there is prioritisation of the recipient pathway, taking account of those who may present late for treatment, to ensure pre-emptive listing where possible. 

In addition, a formal quality improvement initiative will be introduced to this work and SDTG agreed that this will be overseen by the Living Donation Board.

REACH Transplant annual report

Orla Hobson presented a summary of the Renal Education and Choices at Home (REACH Transplant) 2024 annual report, particularly noting that between 1 December 2023 and 30 November 2024, REACH Transplant Nurse Specialists undertook 308 home visits with potential kidney recipients, along with 560 of their invitees, such as family members and friends. 

She also provided a brief breakdown of figures relating to the sex and gender, ethnicity, and age of patients and the SIMD of potential recipients and shared comments from a recent survey of patients and clinicians who fed back on their experiences of REACH Transplant. In discussions, it was noted that other parts of the UK are very interested in replicating aspects of the REACH Transplant programme.

Transplant patient survey report 

Lesley Ross referred to the transplant patient survey report that was circulated with the meeting papers and presented the final recommendations from the survey.  

In general, the overall patient feedback was overwhelmingly positive, indicating that transplant services in Scotland are highly valued by organ recipients. However, the survey results highlighted a number of areas where patients’ needs are not always met consistently, leading to specific recommendations to ensure appropriate support is in place for all transplant recipients across Scotland.

John Casey thanked Lesley for her work and SDTG formally signed off the report and the recommendations. 

The survey report will be published on the Scottish Government website in due course.

UK strategy update

Anthony Clarkson highlighted a continued down-trend in organ donation across the UK and advised that the main two factors impacting this are related to the number of potential and eligible donors which remains lower than pre-pandemic levels, and the consent or authorisation rate, which is lower than previous years. The UK consent or authorisation rate is currently around 60% compared, to a rate of up to 70% pre-pandemic. He highlighted that further work is ongoing to understand what is driving these issues. In discussions, it was pointed out that against this background it was all the more important to continue to invest in new transplant technologies and to address workforce issues. 

Anthony went on to advise that key metrics from the latest NHS Blood and Transplant (NHSBT) UK public survey report showed that public support for organ donation remains high despite a continuing long-term decline, with fewer people strongly supporting or committing to donate.  With lower numbers of donors, which are partly explained by changing demographics and a changed donor pool, it was also noted that it would be important to continue marketing and communications work, including in schools and colleges. 

Anthony advised that NHSBT has established a Sustainability and Certainty in Organ Retrieval (SCORE) programme to redesign the delivery model for organ retrieval and the SCORE Programme Director would give a more detailed presentation on this work at the SDTG meeting in April 2025.

Deceased organ donation - Scotland

Harpreet Matharu reported on deceased donation rates in Scotland and advised that there were actually 120 donors during 2023-24. This is now the target set for April 2024 to March 2025 with the year to date on target of 58 proceeding donors. In addition to this there were 12 non-proceeding donors.

Harpreet went on to note that there has been a reduction in the eligible donor pool (similar to that reported at UK level).

The specialist nurse team presence when approaching potential organ donor families has improved and this is credit to the specialist nurses and clinical leads who continue to engage and educate units and clinical teams.

PJ Foundation

Linda Blake provided background to the PJ Foundation, a charitable foundation which was set up in 2017 in memory of PJ Cockburn who passed away at age 12 years while awaiting a quadruple organ transplant. 

Linda went on to talk about some of the achievements of the foundation and the future ambitions of the charity, which include:

• helping to educate Scotland’s young people about organ and tissue donation and transplantation, and empowering young people to make an informed decision;  
• raising the Foundation’s profile across Scotland as a key charity helping young people (and their families) impacted by hospital stays and, or recovery at home; and 
• supporting local community groups to help those in need. 

It was noted that there are good opportunities for future joint working and collaboration between the PJ Foundation, NHSBT and the Scottish Government. 

Any other business

Academy of Medical Royal Colleges – update on the 2025 Code of Practice for the diagnosis and confirmation of death

Iain MacLeod referred to the Academy of Medical Royal Colleges update on the 2025 Code of Practice for the diagnosis and confirmation of death which updates the previous Code of Practice published in 2008. 

The updates strengthen the diagnostic criteria, whatever the circumstance in which the death has occurred and will help to maintain safety and confidence in the diagnosis of death. As a result, neurological death testing will be longer and more rigorous.

Clinicians will be required to fill in new forms to confirm death from January 2025 and the Academy of Medical Royal Colleges has issued an education pack.

Written updates

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

Next meeting

The next meeting will take place on 24 April, 14:00 to 16:30 at an in person meeting in St Andrew’s House, Edinburgh.  No hybrid option is available