Scottish Donation and Transplant Group meeting: August 2022

Attendees and apologies

• Dr Iain Macleod (Co-chair), Joint Chair and Clinical Advisor for Organ Donation in Scotland
• Mr John Casey (Co-chair), Joint Chair and Clinical Advisor for Transplantation in Scotland
• Dr Richard Appleton, Consultant in Anaesthesia and Critical Care, Scottish Intensive Care Society
• Mr John Asher, Consultant Renal Transplant Surgeon, NHS Greater Glasgow and Clyde
• Dr Andrew Bathgate, Consultant Hepatologist, NHS Lothian
• Lisa Burnapp, President of British Transplantation Society/ OTDT Medical Team: Associate Medical Director
• Sumrah Chohan, Human Tissue Authority
• Dr Jonathan Dalzell, Consultant Cardiologist, Golden Jubilee National Hospital
• 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
• Jen Lumsdaine, Living Donor Co-ordinator, NHS Lothian
• Roseanne McDonald, Associate Director for Specialist Services and National Planning, NHS National Services Scotland
• Alex McGuire, Golden Jubilee National Hospital, deputising for (Lynne Dayton)
• Andrew McKie, Secretariat, Scottish Government
• Dr Shona Methven, Consultant Nephrologist and Renal Service Clinical Director
• 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 David Walbaum, Consultant Nephrologist, NHS Grampian
• Andrew Walls, Organ Donation Regional Committee Chair, NHS Dumfries and Galloway
• Linda White, Policy Manager, Organ and Tissue Donation and Transplantation, Scottish Government
• Peter Wyman, Chairman, NHSBT
• Dr Sharon Zahra, Clinical Lead, Tissues, Cells and Advanced Therapeutics, SNBTS

In attendance

• Ann Pullar, Clinical Planning and Innovation Team Leader, Collaborative Services and Technologies for Health, Scottish Government
• Anushka Govias-Smith, Programme Manager, National Specialist and Screening Services
• John Richardson, Assistant Director for Organ Transplantation, NHSBT; attending on behalf of Anthony Clarkson, NHSBT
• Claire Williment, Accountable Executive: Organ Utilisation Programme, NHSBT

Apologies

• Lynne Ayton, Director of Operations Heart, Lung and Diagnostics Division, Golden Jubilee Hospital
• Sam Baker, Donation Policy Branch Head, Scottish Government
• Anthony Clarkson, Director of Organ Donation and Transplantation, NHSBT
• Dr Colin Church, Consultant, Golden Jubilee National Hospital
• Adam Duncan-Rusk, Business Manager, Renal, Transplant and Dermatology
• Dr Martin Johnson, Consultant Physician, Golden Jubilee National Hospital
• Dr Ann-Margaret Little, Consultant Clinical Scientist, NHS Greater Glasgow and Clyde
• Jessica Porter, Head of Regulation, Human Tissue Authority
• Dr Ben Reynolds, Consultant Paediatric Nephrologist, NHS Greater Glasgow and Clyde
• Dr David Turner, Consultant Clinical Scientist, SNBTS
• Dr Helen Tyler, Regional CLOD and Consultant in Anaesthetics and  Intensive Care Medicine, NHS Forth Valley

Items and actions

Welcome, introductions and apologies

Iain Macleod welcomed attendees to the meeting. He announced that Stephen Kirkham and Professor Deirdre Kelly had left the group. Stephen had been a member of the group for a number of years, sharing his wealth of knowledge and experience. His valued contribution to the group will be missed.

He welcomed Peter Wyman, the new chairman of NHSBT, who is replacing Professor Kelly on the group. A replacement for Stephen is still being sought.

Minutes of meeting of 31 March 2022

The note of the previous meeting was agreed.

The action to include a presentation on the NSD Strategic Improvement proposal at this meeting has been put on hold, as discussions are ongoing with National Services Division, to understand how the infrastructure around transplantation services can be improved. An update will be provided at the next meeting.

Donation and Transplantation Plan: 2021-2026 implementation

Implementation Overview

Iain Macleod provided a brief introduction to the work being done to progress the recommendations from the Scottish Donation and Transplantation Plan.

Reduce missed opportunities for deceased tissue donation

Priority 3.3: Increased opportunities for tissue donation.

Neil Healy noted that there had been 77 tissue referrals between April and July 2022, with eight referrals progressing to retrieval. There have also 29 eye donation cases referred to NHSBT.

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

Year to date, there has been 46 corneal and two sclera transplanted in Scotland, with 11 pairs of donated eyes retrieved by SNBTS.

He also noted that work with hospices to increase eye donation had been paused due to changes to the authorisation process with NHSBT. Discussions are ongoing with them about the development of a robust pathway for authorisation and they are working with the Scottish Regional NHSBT team.

Iain asked how they would measure “reducing missed opportunities”. Sharon Zahra confirmed that SNBTS carry out audits and engage with hospitals to monitor any missed opportunities.

Authorisation for organ donation

Priority 3.1: Improve Authorisation Rates.

Susan Hannah stated that there were still issues in some areas where unit staff were raising donation with families, but not contacting a specialist nurse. More of the staff education services have restarted.

Susan discussed the current organ and tissue donation campaign, saying in particular that they had been heavily involved in the video released the previous week with a donor family and specialist nurse.

Living kidney donation: REACH transplant and renal units staffing levels

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

Jen Lumsdaine noted that letters had been sent to the NHS Board Chief Executives and Renal Managers, who will be hosting REACH Transplant nurses to confirm the funding plan and how the programme will be implemented. The job advert for the Band 7 Programme Lead role will be advertised within the following days and once that role is filled the adverts for the Band 6 specialist nurse roles will go live.

Priority 4.3: adequate staffing levels in renal units to support living donation.

Jen Lumsdaine explained that one of the main focusses of this work has been equity of access in Scotland and that she was currently gathering data on donor assessment. She has also been working with the NHSBT staffing planner, but this has shown the differences between the organ donation laws in Scotland and England. This will be discussed at living donation link nephrology meeting in December.

Sustainable, patient-centred transplant services

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

John Casey said that the renal collaborative have been working with National Services Division and NHSBT and a cross-site working group has been created gathering members from the two renal units and looking at non-COVID related issues, which is also being considered by the larger national group. IT and the difficulties units have in accessing patient data across different NHS Boards has been identified as an issue.

Equity of access to transplantation services

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

Andy Bathgate noted that this workstream has been challenging. They have reviewed a lot of literature to see if anything has been published that might be helpful, but unfortunately not much came from this.

The group have been trying to obtain transplant referral rates and have been speaking to representatives for each of the organs, which has been helpful in gathering data on the pathway. Jane Cannon, from the Golden Jubilee National Hospital, has assisted in getting data on cardiac patients.

However, the difficulty has been in finding figures for patients with end-stage organ disease who would benefit from a transplant. Information differs between each organ and it is impossible to get a good estimate on these figures.

Shona Methven stressed that there were multiple steps within each of the pathways and it is difficult to see what is happening at each of these steps, especially in terms of identifying patients would be eligible for a transplant.

John Casey asked if Public Health Scotland might aid in getting this data. Shona confirmed that the Atlas Team was unavailable to assist, as this service had been paused during the pandemic, but they would approach again, as things were returning to business as usual. She also said that they were planning on getting help from a public health trainee to undertake some work around end stage lung disease.

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.

Patient focus groups took place in April, involving 52 recipients across all organs. The report is due to be published shortly and Lesley and Colin will report the results to the group at the December meeting.

To build on the focus groups, they are also intending to conduct a wider patient survey, which will follow on NSD’s 2020 patient survey (focussing on the areas highlighted for improvement), and also look at processes introduced during the pandemic, such as telemedicine. Options are currently being considered as to how to take this forward

The chairs have had a number of meetings with Elaine Spalding, Consultant Nephrologist in Ayrshire and Arran, and Joe McKee from NSS with regards to the development of a Renal Remote Health Pathway. This would allow remote monitoring of heart rate, blood pressure, weight and urinalysis for renal transplant recipients. The main challenge they have discovered is getting data from patients' apps into the Clinical Information Systems in use within different Health Boards, and transfer of information between Health Boards.

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.

Colin Geddes noted that work had not progressed since Stephen Kirkham’s’s resignation. Iain Macleod announced that Radha Sundaram, ICU Consultant, CLOD has agreed co-chair this group with Colin.  

Research and innovation

An approach has been agreed about how to manage the research co-ordinator role that would be hosted by Edinburgh University and it is hoped that this post will be filled by the end of the year. This role will help promote cross transplant research, organise regular research meeting and engage with researchers and networks.

Iain Macleod thanked everyone for all their work in progressing the implementation of recommendations from the Scottish Plan.

Post-2020 plans

UK Organ Utilisation Group update

Claire Williment said that there was not much to update on since the last meeting as the changes in the UK Government has delayed publication of the report, as it needs to be reviewed by UK Ministers and this can’t be done until the new Cabinet is in place. Peter Wyman noted that NHSBT don’t have a funding settlement in place at present and financing the implementation of the recommendations will require discussions with the new Health Secretary.

UK strategy update

John Richardson provided an update on behalf of Anthony Clarkson, who was unable to attend the meeting. He noted that discussions were currently underway with the intention of producing a transformation plan for next year. Year to date, the overall UK transplant numbers are exceeding last year and 2019/20.

Transplant service updates

Edinburgh

John Casey provided the update on behalf of Adam Duncan-Rusk, who was unable to attend the meeting. He advised that transplant services in Edinburgh are fully operational, with no restrictions on transplantations. COVID doesn’t appear to be having an impact on services. There has been no issues with theatre access, but there remains issues with staffing. However, recruitment and training are underway to address this.

West of Scotland

John Asher noted that the picture of West of Scotland services was similar to Edinburgh, with staffing levels being adequate. However, there is would be an impact if there are any staff absences, but rates of staff with COVID or in recovery were low. It was also noted that the uptake in booster vaccines in patients has improved.

Golden Jubilee

Jonathan Dalzell, representing the Golden Jubilee National Hospital, reported that services were fully operational and busy, with 19 transplants in just over four months. They’ve had an temporary expansion to allow for this and consideration is needed to make this permanent to maintain this level of transplants.

John Casey asked if there had been a change in the referral rate over the last few years and Jonathan noted that there had been a drop during lockdown and over the pandemic, but are still busy.

Update on donation/transplantation activity

Living kidney donation

Jen Lumsdaine reported that due to recent publicity they had seen a spike in the number of returned healthcheck questionnaires. She announced that the living donation training module could now be accessed on the NHS Education for Scotland TURAS site.

Lisa Burnapp noted that it was difficult to see if donation numbers were back to pre-pandemic levels. A questionnaire was sent out to get a sense if anything is happening that is leading to dropping referral rates.

Anecdotally, David Walbaum was aware that potential recipients believe that the opt out system means that living donation is not needed and he thought it would be interesting to see if Wales had seen an impact on living donation numbers since the introduction of their legislation in 2015. Jen emphasised the need for education around the importance of living donation; it is just as important that awareness is raised of living donation as well as deceased donation. John Asher also stressed the importance of clinicians discussing the benefits of living donation over deceased donation with their patients.

Action 1 – Discussion to be arranged about raising awareness of living donation – Linda White, Scottish Government/Jen Lumsdaine, NHS Lothian  

Paediatric transplantation

Ben Reynolds was unable to attend the meeting, so no update was provided.

Deceased organ donation

Susan Hannah provided an overview of the current year-to-date figures for deceased organ donation, highlighting that there have been a total of 29 donors (across DBD and DCD donation), with 107 organs retrieved, including 12 for research. She also noted that referral rates were high; between 98% and 100%.

Some staff attended the Belladrum Festival to raise awareness of donation and a specialist nurse was involved in a campaign video, widely shared on social media, that involved a donor family. NHSBT are currently reviewing the eye donation pathway with SNBTS.

Susan provided a brief overview of the report on the 2nd year of the Specialist Requester model.

Tissue donation

Sharon Zahra reported that the referral rates were improving, but are still below pre-pandemic levels, though the donation rates are much the same. Work around eye only donation is still work in progress. She also noted that they were seeing the highest rate of islet donation in five years, however bone donation was still low as orthopaedic surgery was still down. 

Any other business

Neal Padmabhan noted that the National Institute for Health and Care Excellent (NICE) had recently authorised the use of Imlifidase for people who are waiting for a kidney transplant and who are highly sensitised to human leukocyte antigens (HLAs) John Asher said the this would be getting discussed at the next Scottish Renal Collaborative meeting.. NHSBT will need to look at how the matching algorithm will work, as the transport time of the organs will also be an issue.

Lisa Burnapp confirmed NHSBT were looking into the use of HLA/Imlifidase and discussions were taking place on the clinical, logistical and commissioning issues. The intention would be to convene a group, with input from the British Transplantation Society (BTS) and transplant units.

Peter Wyman asked if the members felt they were getting the support that they needed from NHSBT. The members had no immediate issues, and Peter noted that he was happy to keep communication open if any issues arose.

With regards to the review of the opt out system of organ donation, Colin Geddes said that it would be helpful to also monitor living donation figures, to see if there was an impact on living donation numbers. Linda White said that the policy team would have a think about how we could include this data, though noted that the review was of the opt out system and not organ donation in general.

Action 2 – Discussion to be arranged between the policy team and ASD to consider the inclusion of living donation figures as part of the evaluation – Linda White, Scottish Government

Written updates

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

Next meeting

The next meeting will take place on 15 December at 14:00, via Microsoft Teams.

Summary of action points

Action 1 – Discussion to be arranged about raising awareness of living donation – Linda White, Scottish Government/Jen Lumsdaine, NHS Lothian  

Action 2– Discussion to be arranged between the policy team and ASD to consider the inclusion of living donation figures as part of the evaluation – Linda White, Scottish Government

Papers

• written updates