Scottish Donation and Transplant Group meeting: August 2023

Attendees and apologies

• Mr John Casey, Joint Chair and Clinical Advisor for Transplantation in Scotland
• Dr Iain Macleod, Joint Chair and Clinical Advisor for Organ Donation in Scotland
• Mr John Asher, Consultant Renal Transplant Surgeon, NHS Greater Glasgow and Clyde
• Dr Pauline Auston, Consultant in Anaesthesia and Intensive Care Medicine
• Ms Sam Baker, Unit Head, Scottish Government
• Dr Andrew Bathgate, Consultant Hepatologist, NHS Lothian
• Mr George Gordon, Lothian Organ Donation Committee (ODC) Chair/Scotland Regional ODC Chair
• Mrs Susan Hannah, Regional Head of Nursing - Organ Donation, NHSBT
• Mr James How, Blood, Tissue and Organ Donation Team Leader, Scottish Government
• Dr Martin Johnson, Consultant Physician, Golden Jubilee National Hospital
• Mr Chris Johnston, Consultant Transplant Surgeon/NORS Representative, NHS Lothian
• Ms Jen Lumsdaine, Living Donor Co-ordinator, NHS Lothian
• Professor Derek Manas OTDT Medical Team: Associate Medical Director, NHSBT
• Ms Roseanne McDonald, Associate Director for Specialist Services and National Planning, National Services Division
• Mr David McIlhinney, Policy Officer, Organ and Tissue Donation and Transplantation, Scottish Government
• Dr Shona Methven, Consultant Nephrologist and Renal Service Clinical Director, NHS Grampian
• Mr Neil Healy, Lead Nurse for Tissues, Cells and Advanced Therapeutics, SNBTS
• Dr Lesley Ross, Patient representative
• Mr John Stirling, Head of Operations, NHSBT
• Dr Radha Sundaram, ICU Consultant and CLOD, NHS Greater Glasgow and Clyde
• Dr David Turner, Consultant Clinical Scientist, SNBTS
• Mrs Linda White, Policy Manager, Organ and Tissue Donation and Transplantation, Scottish Government
• Mr Peter Wyman, Chair, NHSBT
• Dr Sharon Zahra, Clinical Lead, Tissues, Cells and Advanced Therapeutics, SNBTS

Guests

• Mr Raymond Braid, Programme Manager, National Services Division
• Tim Andrew, Organisational Lead for Strategy and Change, Public Health Scotland
• Edward Clifton, Unit Head – Scottish Health Technologies Group, Healthcare Improvement Scotland

Apologies

• Dr Colin Church, Consultant Pulmonologist and Pulmonary Vascular Physician, NHS Greater Glasgow and Clyde
• Mr Anthony Clarkson, Director of Organ Donation and Transplantation, NHSBT
• Dr Jonathan Dalzell, Consultant Cardiologist, Golden Jubilee National Hospital
• Mr Adam Duncan-Rusk, Business Manager, Renal, Transplant and Dermatology, NHS Lothian
• Dr Colin Geddes, Consultant Nephrologist, NHS Greater Glasgow and Clyde
• Dr Ann-Margaret Little, Consultant Clinical Scientist, NHS Greater Glasgow and Clyde
• Ms Jessica Porter, Head of Regulation, Human Tissue Authority
• Ms Elizabeth Sadler, Deputy Director, Public Health Capabilities, Scottish Government
• Mr Mark Print, Patient representative
• Dr Ben Reynolds, Consultant Paediatric Nephrologist, NHS Greater Glasgow and Clyde
• Dr David Walbaum, Consultant Nephrologist, NHS Grampian
• Ms Claire Williment, Accountable Executive, Organ Utilisation Programme, NHSBT

Items and actions

Welcome, introductions and apologies

John Casey welcomed attendees to the meeting. He advised that George Gordon, representing the Organ Donation Committee Chairs had replaced Andrew Walls and Pauline Austin, representing the Scottish Intensive Care Society, had replaced Richard Appleton.

Minutes of meeting of 16 March 2023

It was noted that the two actions from the meeting on 16 March 2023 were now complete and the minute was agreed.

Donation and Transplantation Plan: 2021-2026 Implementation

Implementation overview

John Casey provided a brief introduction to the work being done to progress the recommendations from the Donation and Transplantation Plan for Scotland: 2021 - 2026.

Reduce missed opportunities for deceased tissue donation

Neil Healy advised that there have been 76 tissue referrals between April and June 2023, with 12 referrals progressing to retrieval.

Sharon Zahra advised that there is a significant national shortage of eye tissue.  As a result, pilot eye donation programmes were being rolled out in Glasgow and Aberdeen hospitals with a number of staff being trained to retrieve eyes out of hours. She added that the centralisation of donor assessment and authorisation has been identified by many staff across the UK as currently having a negative impact on progressing potential donors in an efficient manner.

She also highlighted the challenges around training staff to authorise donations due to competing priorities and the lack of funding for this area of work.  Cornea transplantation is not a commissioned service in Scotland; however Roseanne McDonald agreed to table these concerns with the National Specialist Services Committee (NSSC) to seek their views on whether national planning is needed for this.

It was noted that a patient register of those waiting for a cornea transplant doesn’t currently exist and should be considered.  

Authorisation for organ donation

Susan Hannah advised that between April 2022 and March 2023 there was a 40% improvement in donor eligibility of potential Donation after Circulatory Death (DCD) donors and 12% more families were approached than last year.  Donor numbers increased 20% from last year and the target of 102 donors was achieved.

This year the NHSBT target is 109 deceased donors with an average of 9 donors a month. Between April and June 2023 there were 25 donors in Scotland.

Susan went on to refer to the Specialist Requestor three year evaluation report, which was circulated with the meeting papers.  She advised that the evaluation highlighted several achievements and that it is recommended that  the Specialist Requester model continues as evaluation has demonstrated the positive impact on authorisation rates, staff flexibility, improving the donation pathway and avoiding 24 hour shifts for specialist nurses.

Living Kidney Donation: REACH Transplant and Renal units staffing levels

Jen Lumsdaine advised that all REACH Transplant specialist nurses have completed the introductory education programme. The REACH Transplant booklet has been finalised, printed and distributed to all units and a six month evaluation of the REACH Transplant programme is underway.

Jen noted that the NHSBT living donor co-ordinator workforce planner has been completed for all areas for the living donor assessments. Some renal units are now already using this for workforce planning.

Sustainable, patient-centred transplant services

John Casey advised that work is underway to review the composition of the Scottish Renal Collaborative group.  He advised that Dr Gareth Jones, Consultant Nephrologist from the Royal Free London NHS Foundation Trust is joining a future meeting of the Scottish Collaborative to provide an update on the plans for the renal regional collaboratives for England. 

Equity of access to transplantation services

Shona Methven advised that a draft letter had been prepared to distribute to Medical Directors of NHS Boards benchmarking their referral and transplantation rates for each solid organ transplant compared to the Scottish average and asking for support for engagement of all referring teams. 

She went on to advise that a Chief Scientist Office grant application, which she was co-applicant for, had been successful and funding had now been granted.  The application entitled "Understanding equity of access to best care for people with kidney failure" will be led by Dr Samira Bell,  University of Dundee, and the project will start in November 2023.

Aftercare for transplant patients

Lesley Ross was pleased to report that the transplant patient survey was now finalised and will launch on 19 September 2023 and close on 29 December 2023.  As well as an online version of the survey, it will be available in paper copy and in easy-read format and translated into six languages.

Lesley also advised that a survey of current practice of clinicians on their use of telemedicine for transplant patient consultations launched on 28 June 2023.  The deadline for completion was extended to 8 September.

Clinicians have the right expertise to support patients locally

Radha Sundaram advised that five focus groups have taken place with cardiologists and hepatologists. Focus groups on kidneys and lungs were taking place shortly and work is in progress to arrange further focus groups with Liver Transplant Co-ordinators and psychological services for patients with heart and liver transplants.

Research and Innovation

John Casey advised that following the recent interviews to appoint a Scottish Transplant Research Manager, the successful candidate decided not to accept the position.  The post was re-advertised on 3 August and will close on 24 August 2023.  The Transplant Research Manager will be based at the University of Edinburgh.

Public health improvement

James How advised that priority seven in the Scottish Donation and Transplantation Plan covers public health improvement, with two long term recommendations focussing on working with Public Health Scotland (PHS) and working more widely within Scottish Government on prevention policies in areas such as diet, alcohol, drugs and tobacco. Tim Andrew from PHS was asked to present at this meeting on PHS’ work in this area.

Tim Andrew summarised PHS’ role and its key priorities of: preventing disease, prolonging healthy life and promoting health. He explained how PHS aims to deliver its objectives by working with a range of partners, such as Directors of Public Health, local authorities and Scottish Government. There were a number of projects PHS was supporting, e.g. on minimum unit pricing or measures to promote healthy eating, which aimed to support the aims of priority seven in seeking to reduce organ failure as well as other projects seeking to identify illness sooner. It was also noted that PHS had an important role e.g. in supporting equity of access to transplantation in supplying key evidence and data.

Unfortunately progress was challenging and current forecasts suggested there could be around a 21% rise in the burden of disease in the next 20 years. However, policy makers were keen to tackle this and focus more on prevention.

James How summarised that with the help of this presentation of the work of PHS, we would look to summarise work in this area in the forthcoming annual implementation report on progress on the Plan, which would be available for the December meeting of SDTG. It was not envisaged that new work streams would be set up in this area under the Plan.

Assessment and Repair Centre (ARC)

John Casey reminded SDTG that priority two in the Plan sets out the ambition to  consider moving ahead with development of a Scottish ARC, subject to the findings of initial feasibility work, albeit noting the costs and long timeframes. 

Derek Manas then updated SDTG on the ongoing work of the Organ Utilisation Group (OUG) in this area, which was envisaging developing two to three regional ARCs focussing on lungs and livers. Roseanne MacDonald queried whether the northern ARC could not be in Scotland, which Derek did not rule out, although he noted that the ARC could not be too far from transplant centres. Derek also added that having an ARC did not mean perfusion could not continue in centres – only organs in poor condition would be sent to the ARC. Chris Johnston asked why it was being envisaged that livers and lungs should be dealt with together in the same ARC and couldn’t there be two separate centres covering these organs. Derek answered that many of the team members covering these organs could be the same, so it would be more efficient to deal with them in the same centre.

SDTG committed to stay closely appraised of the work of the OUG in this area and it was agreed that someone from Scotland should join the UK ARC working group.

Living donor economic analysis

John Casey welcomed Edward Clifton, from Healthcare Improvement Scotland, to the meeting. Edward advised that the Scottish Health Technologies group was asked to undertake an economic evaluation of living donor kidney transplantation by NHS National Services Scotland's National Services Division to inform the future commissioning of transplant services in Scotland.

The economic model compares living donor transplantation with both deceased donor transplantation and kidney dialysis. Results are based on Scottish Renal Registry data, provided by Public Health Scotland.

Edward provided an overview of the background to the analysis, the results and conclusions, which revealed that the economical modelling shows that living donor transplantation is the most cost-effective therapy.

A peer review exercise will now be undertaken and SDTG members are invited to participate.  It was agreed that the analysis should be published.

UK strategy update

John Stirling indicated that the UK was currently on track to have the highest ever number of deceased donors this year. NHSBT was also making a number of improvements to its IT systems to help ensure the donation process runs more smoothly.

Update on donation/transplant activity

Living kidney donation

Jen Lumsdaine updated on living kidney activity, and noted that a short-term working group would be set up to look at perceived barriers to pre-emptive transplantation, working by means of monthly online meetings and then a face to face meeting in Stirling in December. Jen also noted ongoing concerns about information flow in relation to the 2022 law changes on paying for transplantation abroad. Derek Manas confirmed that he was looking at this issue and would confirm further actions to be taken in due course. It was agreed that, once this was confirmed, Jen Lumsdaine would put a paper to the Scottish Renal Association to increase their awareness of the legislation and SDTG may also then write to Health Boards.

Deceased organ donation

Susan Hannah updated on the latest deceased organ donation activity, drawing attention to the forthcoming organ and tissue donation week and 10th anniversary of the Order of St John event.

NORS activity

Chris Johnston updated on the work of the Edinburgh retrieval team and the excellent work achieved by the use of Normothermic Regional Perfusion, which had significantly increased DCD liver transplantation in Edinburgh, even though the team was not currently staffed to allow for 24/7 working. Roseanne Macdonald said it would be useful to have further discussions on what could be achieved if the team were fully staffed.

Tissue donation

Sharon Zahra updated on the latest state of play on tissue activity, with referral rates continuing to fluctuate but improving overall, and noting that planning was in progress to implement FAIR (For the Assessment of Individualised Risk) III changes for tissue and cell donors, which had been recommended by SaBTO, although SNBTS would first need to await updated JPAC guidance. 

Any other business

John Casey suggested that SDTG should meet in person once per year and that the Secretariat will send out a separate note asking which meeting throughout the year is most preferred face-to-face. Other meetings will be held online.

Written updates

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

Next meeting

The next meeting will take place on 14 December 2023, 14:00 to 16:00, and will be a Microsoft Teams meeting.

Action points

Action 1:

Roseanne McDonald to ask NSSC for views on whether national planning is needed for cornea transplantation in Scotland.

Action 2:

Derek Manas to confirm further actions in relation to the information flow following the 2022 law changes on paying for transplantation abroad.

Action 3:

Jen Lumsdaine to put a paper to the Scottish Renal Association to increase their awareness of the 2022 law changes on paying for transplantation abroad.

Action 4:

SDTG to write to NHS Boards increase their awareness of the 2022 law changes on paying for transplantation abroad.

Action 5:

Linda White to check on members’ preferences for when to have the next in-person meeting in 2024.

Papers

Written updates