Scottish Donation and Transplant Group minutes: April 2025

Attendees and apologies

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
• Sam Baker, Donation Policy Branch Head, Scottish Government
• Linda Blake, PJ Foundation
• Amanda Forbes, Scottish National Heart Failure Service Manager, Golden Jubilee National Hospital
• Neil Healy, Lead Nurse for Tissues, Cells and Advanced Therapeutics, Scottish National Blood Transfusion Service
• James How, Blood, Tissue and Organ Donation Team Leader, Scottish Government
• Mr Chris Johnston, Consultant Transplant Surgeon/NORS Representative, NHS Lothian
• Jen Lumsdaine, Lead Nurse, Living Donation Scotland, NHS Lothian
• Mark Print, Patient Representative
• Kirstin Robertson, Specialist Services and National Planning, National Services Directorate
• Dr Lesley Ross, Patient Representative
• Rachel Rowson, Regional Manager for Scotland, NHS Blood and Transplant
• Dr Matthew Saunders, Public Health Consultant, Public Health Scotland
• John Stirling, Head of Operations, NHS Blood and Transplant
• Dr David Turner, Consultant Clinical Scientist, Scottish National Blood Transfusion Service
• Dr Helen Tyler, Regional CLOD and Consultant in Anaesthetics and Intensive Care Medicine, NHS Forth Valley

Guests

• Joanne Brooks, Lead Nurse, NHS Blood and Transplant
• May Cooper, NHS Blood and Transplant
• Ian Currie, Associate Medical Director (Retrieval), NHS Blood and Transplant
• Karen Quinn, Assistant Director, UK Commissioning and Service Development, NHS Blood and Transplant
• Dee Thiruchelvam, Chief Nurse, NHS Blood and Transplant

Apologies

• Dr Pauline Austin, Consultant in Anaesthesia and Intensive Care Medicine, NHS Tayside
• Dr Andrew Bathgate, Consultant Hepatologist, NHS Lothian
• Elaine Campbell, PJ Foundation
• Anthony Clarkson, Director of Organ Donation and Transplantation, NHS Blood and Transplant
• Simon Cuthbert-Kerr, Deputy Director, Public Health Capabilities, Scottish Government
• Jo Farrar, Chief Executive, NHS Blood and Transplant
• Mr George Gordon, NHS Lothian Organ and Tissue Donation Committee (ODC) Chair/Scotland Regional ODC Chair
• Professor Derek Manas, Medical Director, NHS Blood and Transplant
• Dr Gerard Meachery, Consultant in Respiratory and Transplant Medicine, Freeman Hospital
• Jessica Porter, Head of Regulation, Human Tissue Authority
• Dr Ben Reynolds, Consultant Paediatric Nephrologist, NHS Greater Glasgow and Clyde
• Moira Straiton, Associate Director, Specialist Services and National Planning, National Services Directorate
• Dr David Walbaum, Consultant Nephrologist, NHS Grampian
• Claire Williment, Accountable Executive, Organ Utilisation Programme, NHS Blood and Transplant
• Peter Wyman, Chair, NHS Blood and Transplant
• Dr Sharon Zahra, Clinical Lead, Tissues, Cells and Advanced Therapeutics, Scottish National Blood Transfusion Service
• Dr Jonathan Dalzell, Consultant Cardiologist, Golden Jubilee National Hospital

Items and actions

Welcome and introductions

Iain MacLeod welcomed attendees, who introduced themselves.

Minutes of meeting of 12 December 2024

The note of the previous meeting was agreed as an accurate record. No actions arose from the previous minutes.

Sustainability and Certainty in Organ Retrieval (SCORE) update

Karen Quinn and Ian Currie updated on SCORE, focussing on the introduction of the Planned Arrival Window (PAW) over the coming year. The PAW is designed to reduce pressure and uncertainty for overworked retrieval teams, which are struggling to deal with lengthier and increasingly complex donation processes. The aim is to deliver more predictable National Organ Retrieval Service (NORS) services, creating more opportunities for daytime transplant surgery. The planned PAW is from 20:00 to 03:00, which is the point at which the retrieval team will arrive at the donor hospital to undertake the donation operation. This will allow for the organs to arrive in transplant centres in time for daylight implant. These changes will deliver improvements, efficiencies and certainty, in terms of transport resources, for donor families, and for retrieval and transplant teams.

In discussions, the proposed changes were welcomed by SDTG. Some concerns were raised about whether digital systems would be in place in time to facilitate these changes. Karen confirmed that information technology updates to the matching and offering system were already in train. In terms of impacts, Ian said these changes should make things much easier for clinicians as there should be more time to arrange for the right staff to be in the right place at the right time, which should increase patient safety and reduce inefficient and unsustainable travel (e.g. a reduction in NORS team flights). Patients have given positive feedback, as they should get more advanced notice of operations and avoid patients waiting for potential phone calls during the night.

Although there would certainly be overall positives for donor families, the point was made that there might be challenges where families want flexibility. However, it was noted that the PAW was a window, so flexibility could be available in some situations to try to accommodate families’ needs. There could also be impact on living donation, if further pressure is put on operating capacity in daytime hours. NHS Blood and Transplant (NHSBT) agreed, and said they were taking into account impacts on other pathways. Certainty of funding for Donation and Circulatory Death (DCD) hearts and Normothermic Regional Perfusion (NRP) technologies as part of the changes was very much welcomed. Finally, in terms of required changes to workplace practices, tissue typing would also now need to be carried out during the daytime, which would need to be factored in. And there could be a need for more clinicians to be available over a more compressed working period during daytime hours, which could be challenging to achieve in some circumstances.

National Services Directorate (NSD) commissioning update

Kirstin Robertson gave an update on the work of NSD in commissioning transplant services in Scotland, summarising the performance monitoring, service development, and risk management work carried out by NSD. Commissioning plans are in place for each national service to support proactive monitoring, reporting and planning. NSD commission eight transplant services in Scotland.

An overview was also given of organ specific transplants numbers and developments across the main transplant centres. Although, in line with UK comparators, transplant services in Scotland are lower than commissioned transplant numbers, NSD is focussing on supporting services to increase to around pre-pandemic levels where possible, however this is subject to various factors including donation, suitability and availability. In terms of the lung transplant services provided by the Freeman hospital in Newcastle, NSD is undertaking some analysis in the context of UK comparators, specific to Scottish patients. Finally, NSD noted work at UK level including the setting up of the new Transplant Oversight Group by NHSBT and NHS England, with a focus on outcomes to optimise synergies between commissioners, and continued work following from the Implementation Steering Group for Organ Utilisation (ISOU). Devolved nations representatives have been invited to join this group and feedback information via their respective governance structures.

In discussions, some concerns were raised about the focus by NSD on transplant numbers, which unlike in other services cannot be controlled, given that transplants are entirely dependent on suitable donations. There were also some concerns about NSD engaging at a high level in host organisations, which might mean detailed operational data is not considered. NSD advised that as the commissioners they are accountable to all 14 Territorial Health Boards who contribute funding for nationally designated specialist services and as part of the governance structure of reporting to the Health Boards there is a requirement to report on service performance for all national services as well as to demonstrate provider Health Board support and an organisational level of any service requests. Kirstin commented that building up commissioner knowledge is key before presentations are made at a higher level, for example to NHS Board Chief Executives and this is where quarterly meetings with services is beneficial. The impact of technologies like NRP and OrganOx and the Organ Care System was acknowledged as very important for organ utilisation and this needs to be taken account of. NSD is supporting and monitoring these areas in practice within services in recognition of the changing profile of organ donation and to increase organ utilisation rates. Transplant services are seeing older patients and donors.  Machine profusion supports this change and often avoids organ offers being declined.

From the patient perspective, the point was made that outcomes should not just be about survival, but should also consider quality of life and ability to work. NSD said that patient engagement including capturing patient reported outcomes and experience is part of what is expected of transplant centres delivering a national service commissioned by NSD and is therefore something that needs to be led by the services, but NSD will take account of it, including through considering the findings of the recent Scottish Government transplant patient survey. Future demand and inequalities aspects also need to be taken into account. NSD advised that there is a future direction to plan on a population health basis and NSD are engaged with Scottish Government colleagues on this and the structures to support.

Finally, the point was made that predicting transplant demand is particularly challenging due to the wide range of factors and dependencies. Going forward, that is why it was thought particularly useful to have a Public Health Scotland representation on the SDTG.

UK strategy update

Karen Quinn updated that the ISOU programme of work would be closed by the end of 2025. Summarising the outcomes of the ISOU, Karen noted that funding for Assessment and Recovery Centres has now been secured for one year, which will include promotion of increased machine profusion. The trust engagement and patient engagement reports and recommendations have now been drafted and agreed; the xenotransplantation recommendations will be focused on beginning a public debate on this important area of work; and a successful commissioning symposium has taken place. The next steps will be to circulate the outcomes from all this work and embed the changes recommended. Going forward, workplace and digital symposiums were planned and SDTG is asked to consider the ISOU results and participate as required in the planned symposia.

The planned Organ Donation Joint Working Group will focus on the issues caused by falling authorisation and consent rates and falling numbers of eligible potential deceased donors. The work will comprise a mid-term stocktake of the 2030 NHSBT strategy and will be designed to explore possible actions in response to the developments we are seeing. The work will be chaired by Jo Farrar from NHSBT and John Forsythe from the Department of Health and Social Care. Although this work will be led by NHSBT, the aim will be that it will be endorsed by all four health departments. The next key step is a planned international expert meeting from 2 to 6 June in London. This meeting will be informed by two surveys that will be issued to clinicians and donor families. The ask of SDTG is to encourage engagement in the surveys and to take part in the work as required.

In response to questions, Karen confirmed that invites to the June meeting and the questionnaires would issue shortly.

Tissue donation update

Neil Healy briefed SDTG on the range of work carried out by the Scottish National Blood Transfusion Service (SNBTS) in this area. For heart valves and tendons, he confirmed that referral rates are now back to pre-pandemic levels. But there had been major changes in the types of potential donors being referred, with more co-morbidities being seen and donors categorised at higher risk levels. Overall, proceeding donor numbers are down and SNBTS is seeing an increased number of family refusals. Work is ongoing to try to understand these changes. In terms of islet cell isolation, 26 pancreata were processed in 2024/25, successful islet yield was 14, and the number of islet cell transplants was nine. The service is facing the challenge of finding a suitable replacement for the ‘COBE’ equipment used for islet purification as it is being discontinued. SNBTS has purchased extra consumables to allow them continue using the existing equipment in the interim. It was noted that SNBTS was a global leader in this work as all other islet laboratories are facing this problem.

The previous year had seen 37 eye donors, with 74 corneas banked, but the donation rate is significantly below clinical demand. Funding has recently been secured from the Scottish Government for additional eye retrieval staff and Tissue Donor Co-ordinators, which should lead to improvement in this service. However, the situation is likely to remain challenging. Due to clinical units moving away from NHS supplied skin products, SNBTS is no longer responsible for ensuring sufficient skin supply for mass casualties. Finally, in terms of living donation, Neil updated SDTG on bone and reproductive tissue donation numbers, with 561 bones successfully donated, and, separately 21 patients having stored their reproductive tissue in 2024/25 for their own future use.

In discussions, concerns were raised about eye donation numbers due to the level of family refusals. Karen noted that this is an issue UK-wide, and NHSBT is working on improvements. It was noted that some work is also being done to look at ways of increasing donation through creating new training materials to help change public perceptions of eye donation, including through inclusion of patient stories to show the impact eye donation can have on people’s lives. The point was also made that there are real opportunities for increasing the availability of pancreata, both for validation of the new islet equipment and for solid pancreas or islet transplants. For validation, in many cases pancreata are not currently retrieved, so this would just need NHSBT approval to allow retrieval of the pancreas where the family have authorised donation for clinical audit. For transplant, increasing the upper age limit for donation to e.g. 55 years old could increase transplants; however it could require a change to matching and offering information technology systems. NHSBT said they were open to facilitating how to increase donations in this area.

Deceased organ donation – Scotland

Joanne Brooks updated on deceased organ donation numbers in Scotland, noting that there had been 105 deceased donors and 290 organs retrieved in 2024/25. Donation after brain death numbers were down. Conversely, donation after circulatory death numbers increased. The referral rate remained high, at 97%. The team took 690 referrals throughout the year and 186 donor families were approached. Deemed authorisation increased over the course of the year. Overall, Joanne noted that the challenges being seen UK-wide were mirrored in Scotland. Other developments this year included that the eye only service had been handed over to the central NHSBT service in Speke, Liverpool and donor recognition funding had been centralised. The team was working with the PJ Foundation and it was suggested this could include raising awareness of donating organs for research as Scottish authorisation rates for research were lower than the rest of the UK.

In discussions, it was noted that the Scottish Transplant Research Manager would be very keen to be involved in any initiatives to increase numbers of organs donated for research. Iain thanked the Scottish team for all their work and innovation over the course of the year.

Any other business

Duty to report transplant-related offences

James How reported that the Scottish Regulations putting a new duty on relevant clinicians to report both transplant related crimes and transplants that have taken place abroad to the Human Tissue Authority would be laid in Parliament on 2 May 2025 and were due to come into force on 1 July 2025. The Regulations, which have been discussed several times before in SDTG and also at an online consultation event in June 2024, would mirror the arrangements already in place in the rest of the UK.

In discussions, the point was stressed that it would be important to ensure guidance in relation to the new duties was issued to all relevant staff in good time. The point was made that issuing guidance via safeguarding Senior Responsible Officers would be useful.

Transplant patient survey

James How reported that the Scottish transplant survey had been published on 31 March 2025 and would be followed up and monitored via SDTG. James also thanked both Lesley Ross and Linda White for all the work involved in putting together and publishing the survey.

In discussions, a request was made that transplant centre specific information be distributed to centres if it could be made available. On further questioning, Lesley noted that in terms of patients accessing local phlebotomy, patients in remote and rural areas were well served, and that the areas where difficulties were reported were Greater Glasgow and Clyde and Lanarkshire, although the numbers reporting difficulties were low.

Written updates

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

In discussions, Jen Lumsdaine noted that Orla Hobson had now moved on from her post as Renal Education and Choice At Home (REACH) national coordinator. Orla had done a fantastic job in setting up the REACH initiative in Scotland. Orla had been recruited by NHS Lothian, but her replacement will be hosted by the Scottish National Blood Transfusion Service, given that this is a national service.

Iain thanked Sam Baker for all her work and contributions in her post in the Scottish Government over the past nine years. Sam is leaving at the start of July 2025 to take a career break.

Next meeting

The next meeting will take place on 21 August 2025, 14:00 to 16:00, and will be a Microsoft Teams meeting.

Summary of action points

Action 1: Karen Quinn from NHSBT to convene a meeting or discussion with interested SDTG members (Neil Healy, Chris Johnston and John Casey) to explore options for increasing donation levels of pancreata.

Action 2: The Scottish Transplant Research Manager to contact the NHSBT Lead Nurses to discuss joint working on increasing numbers of organs donated for research.

Action 3: Linda White to consider what further transplant centre specific information can be circulated to centres from the transplant patient survey results.