Scottish Donation and Transplant Group meeting: December 2023

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
• Mr John Asher, Consultant Renal Transplant Surgeon, NHS Greater Glasgow, and Clyde
• Dr Pauline Austin, Consultant in Anaesthesia and Intensive Care Medicine, NHS Tayside
• Sumrah Chohan, Human Tissue Authority
• Mr Peter Croan, Associate Director Quality and Performance, NSD
• Sam Baker, Donation Policy Branch Head, Scottish Government
• Dr Andrew Bathgate, Consultant Hepatologist, NHS Lothian
• Anthony Clarkson, Director of Organ Donation and Transplantation, NHSBT
• Amanda Forbes, Scottish National Heart Failure Service Manager, Golden Jubilee University Hospital
• Dr Colin Geddes, Chair of the Transplant Recipient Support and Aftercare working group, NHS Greater Glasgow, and Clyde
• Mr George Gordon, NHS Lothian Organ Donation Committee (ODC) Chair/Scotland Regional ODC Chair
• 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
• Chris Johnston, Consultant Transplant Surgeon/ NORS Representative, NHS Lothian
• Dr Ann-Margaret Little, Consultant Clinical Scientist, NHS Greater Glasgow, and Clyde
• Jen Lumsdaine, Living Donor Co-ordinator, NHS Lothian
• Andrew McKie, Secretariat, Scottish Government
• Dr Neal Padmanabhan, Consultant Nephrologist, NHS Greater Glasgow, and Clyde
• Dr Lesley Ross, Patient representative
• Moira Straiton, Associate Director – Specialist Services and National Planning, NSD
• Dr Helen Tyler, Regional CLOD and Consultant in Anaesthetics and 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

Guests

• Angelica Cabello Araujo, Scottish Transplant Research Manager, Scottish Government
• John Forsythe, Organ Utilisation Group Co Chair, DHSC
• Orla Hobson, REACH Transplant Programme Lead, NHS Lothian
• Scott McVean, Research Officer, Population Health Analysis team, Scottish Government

Apologies

• Lynne Ayton, Director of Operations Heart, Lung and Diagnostics Division, Golden Jubilee Hospital
• Dr Colin Church, Consultant, Golden Jubilee National Hospital
• Dr Jonathan Dalzell, Consultant Cardiologist, Golden Jubilee National Hospital
• Adam Duncan-Rusk, Business Manager, Renal, Transplant and Dermatology
• Jo Farrar, Chief Executive, NHSBT
• Dr Martin Johnson, Consultant Physician, Golden Jubilee National Hospital
• Professor Derek Manas, OTDT Medical Team: Associate Medical Director
• Alex McGuire, Golden Jubilee National Hospital, deputising for (Lynne Dayton)
• Dr Shona Methven, Consultant Nephrologist and Renal Service Clinical Director
• Jessica Porter, Head of Regulation, Human Tissue Authority
• Mark Print, Patient representative
• Dr Ben Reynolds, Consultant Paediatric Nephrologist, NHS Greater Glasgow, and Clyde
• John Stirling, Head of Operations, NHSBT
• Dr Radha Sundaram, ICU Consultant and CLOD, Co-chair of the Transplant Recipient Support and Aftercare working group, NHS Greater Glasgow, and Clyde
• Dr David Turner, Consultant Clinical Scientist, SNBTS
• Peter Wyman, Chair, NHSBT
• Dr Sharon Zahra, Clinical Lead, Tissues, Cells, and Advanced Therapeutics, SNBTS

Items and actions

Welcome, introductions and apologies

Iain Macleod welcomed attendees to the meeting. In particular, he welcomed Angelica Cabello Arauja, Scott McVean, Orla Hobson and John Forsythe who were attending the meeting to present on agenda items.

Iain explained about the changes made to the structure of the meetings, highlighting that although the regular verbal updates were important, it was felt that it would be better of these were provided as written updates to allow the meetings to allow the focus of discussion to be on substantive items. He did note that would continue to be reviewed.

Minutes of meeting of 17 August 2023

The note of the previous meeting was agreed.

It was noted that the first action was still on-going, but an update would be provided to the group by National Services Division (NSD) representatives as soon as possible, while actions three and five had been completed. With regards to actions two and four, James How stated that he would respond on these points under agenda item 5: Duty to Report Transplant-related Crimes. Peter Croan announced that Roseanne McDonald would be retiring at the start of the new year.

Following the discussion on Living Donor Economic Analysis at the previous meeting, John Asher updated on recently released figures which reinforced the message from that presentation. He stated that new figures would be shared soon, which shows the cost effectiveness of living kidney donation.

Donation and Transplantation Plan: 2021-2026 implementation

Annual progress report

Linda White provided an overview of the progress implementing recommendations from the Scottish Donation and Transplantation plan in the last year. She noted that a lot of progress had been made, including deployment of all Renal Education and Choices at Home (REACH) Transplant nurses, the appointment of the Scottish Transplantation Research Manager and the launch of the transplant patient survey.

John Asher was encouraged by the progress that has been made, but raised concerns that letters sent out to NHS Board Medical Directors regarding timely referral for transplantation. His experience was that the letter was being shared with the wrong recipients, so may not be helpful in some areas. He also noted that NHS Boards may need to convene working groups to take this work forward.

Telemedicine survey report

Lesley Ross presented a summary of the results from the , which ran for ten weeks from 28 June 2023. The survey was distributed to all transplant teams and referring clinicians in Scotland, with forty-seven responses from a cross section of clinical roles and NHS Boards.

The findings revealed that limited appointments presently took place via NearMe or by telephone, with a sizeable proportion still being done in person. Patient choice, the clinical condition of the patient and travel difficulties were regarded as the main factors as to how patients are seen using remote appointments.

Clinicians found that remote appointments were mostly beneficial for patients, particularly with regards to flexibility, no need to travel, no travel costs, convenience and needing to take less time off work.

However, there was less of a clear consensus on the benefit of telemedicine to clinicians. While flexibility, efficiency, time management. Improved compliance and less busy clinics were sighted as benefits, some clinicians also highlighted the challenges, including administrative infrastructure, digital literacy, social deprivation, patients with additional support needs. Most importantly, it was particularly felt that there was a risk with not assessing patients face-to-face.

With the patient survey, which has received almost six hundred responses, closing at the end of December, Lesley was hesitant to make any firm recommendations based on the telemedicine survey until results of the patient survey were analysed at the start of next year.

Timely transplantation in Scotland

Jen Lumsdaine presented on timely transplantation in Scotland, acknowledging the hard work of the short-term working group. Key areas of interest included reviewing of timely listing for deceased transplantation, pre-emptive living donor transplantation, the difference that can be made through REACH Transplant, patient pathways, potential barriers for listing/ transplanting and possible solutions.

At the December annual link nephrologist/ living donation meeting there were discussions around the benefits of timely listing, as well as issues around health inequalities.

Jen noted that particular concerns were raised around testing of patients, with increased waiting times for cardiology and urology testing, with some patients waiting up to six months for an echocardiogram.

The short-term working group will meet again in January and will continue to explore potential prioritisation of transplant candidates for tests and living donor investigations, as well as the patient pathway.

John Asher noted that there is a marked difference between waiting times in England and Scotland, with the requirement for an 18-week referral for testing for transplant patients. Unfortunately, in Scotland, transplant patients do not fit into the necessary requirements to be eligible under the 18-week referral guidelines. He asked if there was any way for the Scottish waiting list guidelines to be revisited to allow for quicker referral for transplant patients.

Scottish Transplant Research Network

Following her appointment as Scottish Transplant Research Manager on 01 November 2023, Angelica Cabello Araujo provided a brief overview of her initial plans for the Network. She proposed that the main aim of the network is to enhance collaboration and facilitate research.

Angelica provided a proposed timeline for the project from now to October 2024 and beyond. She detailed the target audience, which includes, scientists and researchers, clinical professionals, educational and research institutions, patients and advocacy groups and various Government, regulatory and organ procurement organisations.

A question was asked as to whether the network would be compulsory or if work could be undertaken out with it. Angelica stressed that it would not be mandatory to be part of the Network, however being part of it would help to promote collaboration.

Duty to report transplant-related crimes

James How provided an update on recent discussions about the transplant-related crimes regulations in England. The Department of Health and Social Care (DHSC) will be introducing regulations which will place a statutory duty on clinicians in England, Wales and Northern Ireland who work closely with patients that need or have received an organ transplant to report information to the Human Tissue Authority (HTA) if they have a suspicion that an organ transplant related offence has been committed or if they have been made aware that a patient has received an organ transplant outside the UK.

Any reports made to the HTA will be considered and referred to the police if appropriate. The Scottish Government will consider whether any regulatory or other changes are needed in Scotland to mirror those outlined above.

Sumrah Chohan from the HTA said that she was happy for people to reach out to her if they had any questions or concerns.

John Asher highlighted that there has been concerns amongst clinicians about the potential for breaking patient confidentiality and duty of care, when reporting suspected transplant-related crimes, so having regulations in place would be extremely helpful. Neal Padmanabhan strongly felt that following the UK regulations would ensure protection for clinicians.

REACH Transplant Annual Report

Before inviting Orla Hobson to speak to the annual report on REACH Transplant, Iain Macleod noted that this report was the culmination of a lot of hard work over many years and thanked all those involved.

Orla presented a summary of the REACH Transplant annual report, providing background on the project, highlighting the key milestones, particularly noting that 258 home visits with potential recipients had taken place. She provided a brief breakdown of figures relating to sex, ethnicity, age, the number of invitees and the Scottish Index of Multiple Deprivation (SIMD).

She also provided a brief overview of the REACH Transplant evaluation strategy and a snapshot of feedback received from patients in NHS Grampian following a home visit. Finally, she provided some details of the next steps for the project in 2024.

UK strategy update

Anthony Clarkson stated that work was on-going, and he will be able to provide a more detailed update at the next meeting, following publication of the annual report in April.

Anthony noted that that recent figures showed that they are almost back at pre-pandemic levels.

Consent rates have dropped to around 62%, so are being reviewed and the drop may be due to a number of possible factors. In particular, Anthony highlighted that the ability to raise awareness has been impacted by a squeeze on budgets. It was also noted that a lot of work continues on organ utilisation and work on Donation after circulatory death (DCD) hearts continues to go from strength to strength.

Colin Geddes asked if there was an on-going assessment on the impact opt-out in England was having on deceased and living donation numbers. Anthony stressed that it was difficult to interpret the impact due to opt-out being launched during the pandemic.

Organ and tissue donation – opt out system: Monitoring and evaluation report – Year two

Scott McVean presented on the monitoring and evaluation of the opt-out system of organ and tissue donation, providing some background as to why the evaluation required, as well as what areas it was felt the evaluation should cover.

The year two evaluation looked at some of the short-term strands by asking questions, like those asked when developing the baseline, of the relevant NHS workforce through interviews, focus groups and surveys. Scott is currently finalising and analysing the responses with the intention of producing a report next year, which will provide details from public attitude surveys, as well as discussions with the NHS workforce.

Implementation steering group for organ utilisation

John Forsythe first offered his thanks to all those who have been observers or members of the working groups or their sub-groups. He provided an update on the current progress of the steering group. There will shortly be an announcement on the names of the chairs for the patient engagement group, which will meet for the first time in the new year. He also highlighted that, due to the differing needs of the work, there would be different timelines set for the separate strands.

Donor recognition funding proposals

Susan Hannah shared details of her proposal for donor recognition funding, which has been shared with NHS Board Organ Donation Committees (ODC), with the aim of trying to improve flexibility, equality and maximise funding potential, including centralising some of the funding to promote and support Scotland wide donation initiatives.

George Gordon noted that conversations with the ODCs showed that some areas would benefit from central funding, which would assist discussion on opt-out and allow for regular awareness raising. It is anticipated the committees will choose one of the three options following discussions at their next meeting in February. They will report back and provide an update at the April SDTG meeting. Susan noted that if anyone would like to raise any feedback, suggestions, or had any general questions, then George and herself would be happy for people to contact them.

Any Other Business

Written updates

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

Next meeting

The next meeting will take place on 24 April 2024, 14:00 to 16:30, in Room 4ER, St Andrew’s House, Edinburgh.

Summary of action points

Action 1:     

Letter to be drafted to Roseanne, thanking her for her time on SDTG and wishing her the best for her retirement – Andrew McKie, Scottish Government

Action 2:     

This point to be discussed at the co-chairs meeting in January, for example whether we should contact NHS Board Medical Directors to ask to whom the letters regarding timely referral for transplantation were circulated, and what action was taken in response – Linda White, Scottish Government

Action 3:     

Consideration of what next steps should be taken on telemedicine following analysis of the patient survey responses – Scottish Government policy team, NHS Lothian

Action 4:     

Situation, Background, Assessment, Recommendation (SBAR) to be developed and sent to the policy team to support action to influence NHS Leads to consider treatment time guarantees for living donors/ recipients – Jen Lumsdaine, NHS Lothian

Action 5:     

An update on the publication of the Implementation Steering Group for Organ Utilisation annual report to be included as part of the April SDTG agenda – Andrew McKie, Scottish Government

Papers

Written updates