Scottish Donation and Transplant Group meeting: March 2022

Minute of Meeting of Scottish Donation And Transplant Group

Attendees

• 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 & Clyde
• Sam Baker - Donation Policy Branch Head, Scottish Government
• Sumrah Chohan - Human Tissue Authority
• Anthony Clarkson - Director of Organ Donation and Transplantation, NHSBT
• Dr Jonathan Dalzell - Consultant Cardiologist, Golden Jubilee National Hospital
• 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 & 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
• Dr Ann-Margaret Little - Consultant Clinical Scientist, NHS Greater Glasgow & Clyde
• Jen Lumsdaine - Living Donor Co-ordinator, NHS Lothian
• Andrew McKie - Secretariat, Scottish Government
• Dr Neal Padmanabhan - Consultant Nephrologist, NHS Greater Glasgow & Clyde
• Dr Sinéad Power - Interim Head of Health Protection Division, Scottish Government
• Mark Print - Patient representative
• Dr Lesley Ross - Patient representative
• Dr Helen Tyler - Regional CLOD and Consultant in Anaesthetics & Intensive Care Medicine, NHS Forth Valley
• Dr David Walbaum - Consultant Nephrologist, NHS Grampian
• Linda White - Policy Manager, Organ and Tissue Donation and Transplantation, Scottish Government
• Dr Sharon Zahra - Clinical Lead, Tissues, Cells and Advanced Therapeutics, SNBTS

In Attendance

• Laura Barry - (TROD) Trainee Lead in Donation, NHS Greater Glasgow & Clyde
• Moira Straiton - NSD representative
• Lucy Whitehall - Policy Manager, Healthcare Planning and Quality, Scottish Government
• 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
• Dr Andrew Bathgate - Consultant Hepatologist, NHS Lothian
• Lisa Burnapp - President of British Transplantation Society/ OTDT Medical Team: Associate Medical Director
• Dr Colin Church - Consultant, Golden Jubilee National Hospital
• Professor Deirdre Kelly - Non-Executive Director, NHSBT
• Dr Martin Johnson - Consultant Physician, Golden Jubilee National Hospital
• Stephen Kirkham - Patient representative
• Roseanne McDonald - Associate Director for Specialist Services and National Planning, NHS National Services Scotland
• Alex McGuire - Golden Jubilee National Hospital
• Dr Shona Methven - Consultant Nephrologist and Renal Service Clinical Director
• Mr Gabriel Oniscu - Consultant Transplant Surgeon and Clinical Director, Edinburgh Transplant Unit
• Jessica Porter - Head of Regulation, Human Tissue Authority
• Dr Ben Reynolds - Consultant Paediatric Nephrologist, NHS Greater Glasgow & Clyde
• Dr David Turner - Consultant Clinical Scientist, SNBTS
• Andrew Walls - Organ Donation Regional Committee Chair, NHS Dumfries & Galloway

Minutes

1. Welcome, introductions and apologies

1. John Casey welcomed attendees to the meeting. He announced that Charles Wallis, Sharon Grant, Joanna Swanson and Gabriel Oniscu have moved on from their roles and thanked them for their valued contributions to the group.

2. He welcomed Helen Tyler, James How and Sinéad Power, who will be taking over from Charles, Sharon and Joanna respectively. John suggested that Gabriel’s replacement on the group was being considered. He also welcomed Lucy Whitehall, who was attending as a representative from the Scottish Government Collaborative Services and Technologies for Health team, who have responsibility for NSD sponsorship within the Scottish Government.

2. Minutes of meeting of 18 November 2021

3. It was noted that John Asher’s job title was incorrect. Once amended, the minutes from the 18 November meeting were agreed.

Action 1 – John Asher’s job title in the 18 November minutes to be a corrected prior to the minutes being published – Secretariat, Scottish Government

4. John Casey noted that all actions from the previous meeting had been completed, with the exception of the action relating to communication with NHS Inform. Linda White provided an update, saying that a meeting had been organised with NHS Inform colleagues at the start of April, where the content of the organ transplantation page would be discussed.

3. Donation and Transplantation Plan: 2021-2026 Implementation

3.1. Implementation Overview

5. John Casey provided a brief introduction to the work being done to progress the recommendations from the Scottish Donation and Transplantation Plan.

3.2.1. Reduce missed opportunities for deceased tissue donation

Priority 3.3: Increased opportunities for tissue donation.

6. Neil Healy highlighted that tissue case studies, with a feature on eye donation, had been included as part of the “Life Matters” national radio coverage in March.

7. He also noted that there had been 105 tissue referrals between November 2021 and February 2022, with ten referrals progressing to retrieval. There were also 22 eye donation cases referred to NHSBT.

Priority 3.4: A robust eye retrieval service for Scotland and increased eye donation.

8. In 2021/22, there has been 126 corneal and three sclera transplanted in Scotland, with 36 pairs of donated eyes retrieved by SNBTS.

9. SNBTS are looking to expand eye donation into hospice care; however, there is some complexity around the referral process which is currently being explored.

10. Anthony Clarkson said that NHSBT had been struggling to meet the demand for corneas. The pandemic saw a drop in donations, which is yet to bounce back.

3.2.2. Living Kidney Donation: REACH Transplant & Renal units staffing levels

Priority 4.2: Rolling out of the Renal Education and Choices at Home (REACH) programme.

11. Jen Lumsdaine advised that the proposals for the REACH Transplant programme have been discussed with renal units and link nephrologists. However, she is still waiting a decision on the pay banding of the REACH nurse job roles following the submission of the job descriptions to NHS Lothian. Adam Duncan-Rusk confirmed the banding of the REACH nurse job descriptions had been escalated.

Priority 4.3: Adequate Staffing levels in Renal Units to support living donation.

12. A scoping exercise is currently being undertaken to ascertain current staff resources for living donor assessments in all units. All units have been contacted and the results are being collated.

3.2.3. Sustainable, Patient-centred transplant services

Priority 2.2: Build a sustainable, patient-centred transplant service in Scotland.

13. John Casey discussed the work being taken forward by the Renal Collaborative between the two Scottish Renal Transplant Units, who are focusing on various aspects of patient care.

3.2.4. Equity of Access to Transplantation Services

Priority 2.3: All patients likely to benefit from transplantation are offered the opportunity;

14. Andy Bathgate and Shona Methven were unable to attend the meeting but provided a written update, which was shared with the group.

15. The group have been meeting to gather information about different organ transplant pathways and have identified a number of areas of interest across different organs. They have noted that there is no national database of those who are potentially eligible for referral for transplant across solid organs; however, a national cardiac audit is being established and referral for transplantation is being discussed by the supervising group.

16. They have met a number of colleagues, including National Services Division (NSD) about their Commissioning Transplantation to 2020 document and the Advanced Heart Failure review as well as Dr Gerry Meachery from the Freeman Hospital to discuss the lung transplant pathway and authors of the ATTOM study about access to renal transplant in the UK.

17. Their next steps include meeting with cardiac transplant representatives and consideration of a questionnaire to assess perceived barriers to transplantation by referrers.

3.2.5. Aftercare for transplant patients

Priority 5.1: Work to establish telemedicine and online support for those patients who need it to supplement local NHS Board support.

18. The group are working with NSD on their planned patient focus groups, which would be taking place on 20 and 21 April. The Health and Social Care Alliance Scotland are facilitating the sessions, which will be organ specific with discussions focused around personal experiences, communication, emotional support, travelling for care and delivery of future services. The outcomes from these focus groups will help inform a Scotland-wide patient survey in late 2022.

19. They have also met with Scottish Government Digital Health and Care colleagues to explore the development of remote health pathways.

3.2.6. Clinicians have the right expertise to support patients locally

Priority 5.3: NHS Boards/GPs have the expertise and ability to support patients locally post-transplant.

20. Colin Geddes highlighted that one of the initial aims of the group was to identify existing relationships between transplant centres and primary and secondary care and that a survey was planned to help with this exercise.

21. John Casey personally thanked everyone involved for the work that is currently being undertaken and the progress made to date.

3.2.7. Research and Innovation

22. John Casey provided a brief update on the Scottish Transplant Research Symposium that took place on 27 January, which brought together professionals from across academia and NHS Scotland, with an interest in organ and tissue transplantation research. It is hoped that these types of events will become a regular occurrence.

23. There has also been agreement to appoint a support manager to co-ordinate and facilitate the Scottish Transplantation Research Forum. A job description for this role is in development.

4. Post-2020 Plans

4.1. NSD Strategic Improvement Proposal

24. Moira Straiton provided an update on Roseanne McDonald’s behalf, noting that there would be a fuller presentation on the strategic improvement proposal at the August SDTG meeting.

Action 2 – Presentation on the NSD Strategic Improvement proposal to be included on the August SDTG agenda – Secretariat, Scottish Government

25. NSD have been considering how the infrastructure around transplantation services can be improved in order to build on the service and ensure it is fit for purpose in the coming years. It is their proposal to establish a Transplantation Strategic Network to develop a national strategy and put in place a formal governance structure for transplantation in Scotland.

26. NSD have supplied a first draft of a mandate document setting out the proposals for the Network with the Scottish Government. Sam Baker confirmed that whilst the Scottish Government are supportive, in principle, of such a network, there was a need to fully understand more about how this would work in practice and what it would deliver.

4.2. UK Organ Utilisation Group update

27. Claire Williment briefly presented on the work that has been undertaken by the Organ Utilisation Group (OUG). She noted that although the remit of the group was for England, the sub groups included representatives from the other UK nations.

28. The work of the subgroups and international colleagues has now completed. It was highlighted that the challenges reported by international colleagues were similar to the UKs.

29. The recommendations of the OUG, which are currently being drafted, will be agreed by UK Ministers. It is the intention that the final report will be published during the UK Parliament’s summer session.

30. Claire said that she would be happy to share the results of the OUG focus groups with the Aftercare for Transplant Patients working group for information.

Action 3 – Results from the Organ Utilisation Group patient focus groups to be shared with Lesley Ross and Colin Church – Claire Williment, NHSBT

4.3. UK Strategy update

31. Anthony Clarkson advised that the funding settlement for novel technologies has been confirmed with the Scottish and Welsh Governments. However, they were still waiting for confirmation from the Department of Health and Social Care and the Northern Irish government. Until this funding has been agreed they are unable to report on work plans for the next year.

32. He also announced the appointment of Peter Wyman CBE DL as the new chairman of NHSBT.

5. Coronavirus (COVID-19)

5.1. Update on current issues

33. John Asher, representing the West of Scotland Renal Transplant service, advised that there were still issues with COVID affecting both staff and patients. However, he noted a lower proportion of patients were being admitted to hospital with COVID and/or dying in comparison to the Delta variant.

34. He also raised potential issues around the low uptake by transplant recipients of the fourth dose of the vaccine. Although there is uncertainty as to why this is the case, it was important that appropriate communication was sent out to those affected. John Casey confirmed that he had raised these concerns with the Scottish Government’s Clinical Leads Advisory Group.

35. Jonathan Dalzell, representing the Golden Jubilee National Hospital, reported that services were functioning close to pre-pandemic levels. However, there have been issues with nursing staff being unavailable and that there had been some COVID-related absences, but services were coping well.

36. Adam Duncan Rusk, representing the Edinburgh Transplant Unit, reported that there was pressure on retrieval teams, due to general staffing issues, as well as a shortage of nursing staff. The pressure on the service is being largely caused by staffing issues across all levels.

37. He also highlighted concerns about the risk of infections from patient visitors. Concern was raised around how to mitigate patient-visitor risk once lateral flow tests become more difficult to obtain in the coming months.

6. Update on Donation/ Transplantation Activity

6.1. Living Kidney Donation

38. Jen Lumsdaine reported that whilst there has been an increase in living donation, the figures were not at pre-pandemic levels. She also highlighted the positive increase in visits to the living donation pages on the Organ Donation Scotland website as a result of the media campaign in January, as well as the wide range of newspaper coverage and social media activity during that period.

6.2. Paediatric Transplantation

39. Ben Reynolds was unable to attend the meeting, but in his written update he reported that the main issue is a notable reduction in deceased donor offers that were being received by the centre. He also highlighted that the impact of COVID and the reduction in offers has led to a clear increase in the number of children with end-stage kidney disease on renal replacement therapy. However, he noted that this is a UK-wide issue.

6.3. Deceased Organ Donation

40. Susan Hannah provided an overview of the current year-to-date figures for deceased organ donation, highlighting that there have been a total of 81 donors (across DBD and DCD donation), which is a further drop compared to the previous year. She also noted that there had been a 40% drop in eligibility over the last two years.

41. There has also been a drop in authorisation rates for DBD donors compared to previous years; however, DCD authorisation rates have increased. It was also noted that missed referral opportunities and Specialist Nurses for Organ Donation not being present during approaches to families were both reducing.

6.3. Tissue Donation

42. Sharon Zahra reported that the pandemic continues to have an impact on supplies of essential reagents used for islet cell processing.

43. Living bone donation has also been significantly affected by the pandemic, with the need almost outweighing availability, with 477 femoral heads being retrieved in the last year, while 417 were used. SNBTS are currently looking at new hospitals that could potentially offer bone donation.

7. Any Other Business

44. Sam Baker raised the proposed amendment to the UK Health and Care Bill, to create an additional offence where any UK national seeks to pay for or offer some form of reward for an organ while they are abroad. It is proposed that this provision would also cover Scotland.

45. The amendment was about to be considered by the Scottish Parliament where their consent was being sought to the provisions applying in Scotland. If approved, the Scottish Government would work with the relevant stakeholders to help communicate this legislative change to clinicians and those needing or likely to need a transplant.

46. John Asher enquired whether this would have an impact on clinicians who treat a patient who has received a transplant abroad and whether clinicians would be asked to report such patients to NHSBT and authorities for potential prosecution. It was confirmed that law would only apply to people who facilitated organ donation for money, rather a patient’s aftercare in the UK and that there would not be an expectation that clinicians would be asked to proactively investigate or report patients to the authorities.

Written Updates

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

Next meeting

48. The next meeting will take place on 18 August at 14:00, via Microsoft Teams.

Summary of Action Points

Action 1 – John Asher’s job title in the 18 November minutes to be a corrected prior to the minutes being published– Secretariat, Scottish Government

Action 2 – Presentation on the NSD Strategic Improvement proposal to be included on the August SDTG agenda – Secretariat, Scottish Government

Action 3 – Results from the Organ Utilisation Group patient focus groups to be shared with Lesley Ross and Colin Church – Claire Williment, NHSBT