Scottish Donation and Transplant Group (SDTG) – Note of 18 November 2021 Meeting

3. Donation and Transplantation Plan: 2021-2026 Implementation

3.1. Implementation Overview

7. Iain Macleod advised that the implementation of the plan was focused on the short to medium term actions, with a timeline of two to three years and invited members to update on progress.

3.2.1. Reduce missed opportunities for deceased tissue donation

Priority 3.3: Increased opportunities for tissue donation.

8. Neil Healy said that Organ Donation and Tissue week had provided further opportunities to promote tissue donation. He highlighted that 1,700 ID cards had been issued to staff ICUs to assist staff as prompts when making an approach about tissue donation. He also noted that of the 44 referrals between August and October 2021, there were five occasions where relatives declined or were unavailable to discuss and/or authorise donation.

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

9. So far this financial year there have been 68 corneal and one sclera transplant in Scotland, with 18 eye donors retrieved by SNBTS.

10. A bilateral corneal transplant recipient was used as a case study during Organ and Tissue Donation week. In collaboration with NHSBT an eye donation story was included in an organ and tissue donation educational comic created by Creating Public Information students at the University of Dundee.

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. Following the successful pilot in NHS Lothian, a short term working group has been established to lead the national roll out of the REACH Transplant programme. The group have been considering staffing allocations of the new specialist REACH Transplant nurses across NHS Boards and the nurse job descriptions.

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

12. Jen Lumsdaine and David Walbaum have been undertaking a scoping exercise to ascertain current staff resources for living donor assessments in all units.

3.2.3. Sustainable, Patient-centred transplant services

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

13. John Casey echoed Iain's words at the start of the meeting and thanked clinicians and patient representatives who have agreed to chair working groups, as well as those who have agreed to join these groups. He was encouraged by the enthusiasm and appreciated the effort that was being put into taking forward the recommendations of the Scottish plan.

14. The Scottish Renal Collaborative, which is taking forward elements of this priority as part of its work to develop collaborative working, are considering how to allow both renal transplant units and referring clinicians to access and share patient information more easily.

3.2.4. Equity of Access to Transplantation Services

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

15. Andy Bathgate and Shona Methven have identified membership of their group, identifying the importance having a representative for each organ.

16. It was acknowledged that it could be challenging to identify accurate referral rate data and obtaining data on the number of people who need to be referred to services, but they will work with the data that is currently available to them. Roseanne McDonald noted that NSD would be able to assist with data collection and would be happy to meet to discuss.

Action 3 – Meeting to be arranged between Andy, Shona and Roseanne to discuss support that can be provided to the working group by NSD – Secretariat, Scottish Government

17. Colin Geddes said that it would be important to identify the outcomes anticipated and how achievement could be measured. Shona agreed that a clear picture was needed of what is happening at present and stressed the importance of identifying current barriers to access to services.

3.2.5. Transplant recipient support and aftercare

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

18. Lesley Ross advised that the SDTG patient representatives had started mapping patient services for each transplanted organ, to identify service gaps, but needed wider consultation to validate the process. Consideration being given to the benefit of conducting a new patient survey to look at specific issues, such as service changes due to the pandemic and use of telemedicine. Lesley intends to contact NSD and NHSBT to discuss patient surveys.

19. Roseanne McDonald advised the group that the NSD patient focus groups that were put on hold due to the pandemic are being rescheduled for early next year. She commented that she would be happy to liaise with the working group about involving them in these discussions.

Action 4 – Priority 5.1 working group to speak with NSD regarding involvement in patient focus groups – Lesley Ross/ Colin Church, Priority 5 Working Group Chairs

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

20. The scope and membership of this group is still being considered and it was noted that it would be helpful to have a GP representative on the group.

21. John Casey suggested that the co-chairs of the groups taking forward recommendations from priority 5 of the plan meet on a bi-monthly basis to share updates and consider any cross over of work.

Action 5 – Bi-monthly meetings to be arranged with the co-chairs taking forward the Transplant recipient support and aftercare workstreams – Secretariat, Scottish Government

3.2.5.1. Remote Health Monitoring

22. The policy team have met with Scottish Government Digital Health colleagues to get an update on progress being made in development of remote health monitoring systems across the NHS including transplant. They had received updates on Near Me (video appointments service) and a Renal Remote Monitoring Health Pathway for transplant patients, which is being developed by NHS Ayrshire & Arran.

23. It was highlighted that whilst digital access and knowledge for many patients was extremely beneficial, there was a risk that innovation could widen the inequality gap and act as a barrier to services.

3.2.6. Research and Innovation

24. John Casey has met with the Chief Scientist Office to look at ways to increase research opportunities and collaboration in Scotland. This has led to the Scottish Government, in association with the Chief Scientist Office hosting a Scottish Transplant Research Network Symposium on 27 January 2022. The symposium will bring together colleagues from across clinical and basic science teams to hear about research and identify opportunities to get involved in collaborations and to help promote transplant research in Scotland.

25. The group enquired whether this was linked to the research work being undertaken by RINTAG, however, John Casey stressed that this was not the case. The intention of the Scottish network was to provide an opportunity to explore any barriers to research collaboration, but would work collaboratively with RINTAG.