Publication - Minutes

Scottish Donation and Transplant Group meeting: March 2021

Published: 9 May 2021
Directorate: Population Health Directorate
Part of: Health and social care
Date of meeting: 23 March 2021
Date of next meeting: 19 August 2021

Minutes and papers from the meeting of the Scottish Donation and Transplant Group, held on 23 March 2021.

Attendees and apologies

Iain Macleod, Joint Chair and Clinical Adviser for Organ Donation in Scotland
John Casey, Joint Chair and Clinical Adviser for Transplantation in Scotland
Sam Baker, Donation Policy Branch Head, Scottish Government
Andy Bathgate, Consultant Hepatologist - NHS Lothian
Sumrah Chohan, Human Tissue Authority (Attending for Jessica Porter)
Colin Church, Scottish Thoracic Society
Anthony Clarkson, Director of Organ Donation and Transplantation - NHS Blood & Transplant
Bryan Davies, Associate Director, NHS National Services Scotland National Services Division (NSD)
Amanda Forbes, Service Manager for Cardiothoracic, Critical Care and the Scottish National Advanced Heart Failure Service, Golden Jubilee National Hospital (Attending for Lynne Ayton)
John Forsythe, Associate Medical Director, NHS Blood & Transplant
Susan Hannah, Regional Manager, Scotland, NHS Blood & Transplant
Neil Healy, Lead Senior Nurse for Tissue Services, Scottish National Blood Transfusion Service
Deirdre Kelly, Non-Executive Director, NHS Blood & Transplant
Stephen Kirkham, Patient Representative
Jen Lumsdaine, Living Donor Co-ordinator/Living Donor Project, NHS Lothian
Gabriel Oniscu, Consultant Transplant Surgeon and Clinical Director , Edinburgh Transplant Unit - NHS Lothian
Mark Print, Patient Representative
Ben Reynolds, Consultant Paediatric Nephrologist, Royal Hospital for Sick Children – NHS Greater Glasgow & Clyde
Lesley Ross, Patient Representative
Joanna Swanson, Interim Head of Health Protection Division, Scottish Government
Charles Wallis, Regional CLOD and Consultant in Intensive Care Medicine, NHS Lothian
Andrew Walls, Organ Donation Regional Committee Chair, NHS Dumfries & Galloway
Sharon Zahra, Clinical Lead, Tissue and Cells, Scottish National Blood Transfusion Service

Apologies

Richard Appleton, Consultant in Anaesthesia and Critical Care, Scottish Intensive Care Society
Lynne Ayton, Head of Operations, Golden Jubilee National Hospital
Marc Clancy, Consultant Renal Transplant Surgeon, NHS Greater Glasgow & Clyde
Jonny Dalziel, Consultant Cardiologist, Golden Jubilee National Hospital
Marie Gardiner, Service Manager, NHS Lothian
Martin Johnson, Scottish Pulmonary Vascular Unit, Scottish Thoracic Society
Ann-Margaret Little, Consultant Clinical Scientist, NHS Greater Glasgow & Clyde
Neal Padmanabhan, Consultant Nephrologist, NHS Greater Glasgow & Clyde
Jessica Porter, Head of Regulation, Human Tissue Authority
David Turner, Consultant Clinical Scientist - SNBTS
David Walbaum, Consultant Nephrologist, NHS Grampian
Stephen Wigmore, President, British Transplantation Society

In attendance

Sharon Grant, Implementation Lead - Opt out, Scottish Government
David McIlhinney, Policy Officer, SG
Rachel Tatler, Organ Donation Policy Officer, Scottish Government
Linda White, Policy Manager, Organ and Tissue Donation and Transplantation, Scottish Government

Items and actions

Welcome and apologies

Dr Iain Macleod welcomed attendees to the meeting. He noted Dr Heather Maxwell had now retired and Roseanne McDonald had moved posts recorded thanks for their contributions to the group. The Chair welcomed Dr Ben Reynolds, Consultant Paediatric Nephrologist in NHS Greater Glasgow and Clyde, and Bryan Davies, Associate Director at National Services Division, who were attending in their respective places.

Minutes of previous meeting

The minutes were accepted as an accurate reflection of the previous meeting, which was held on 3 December 2020.

Human Tissue (Authorisation) (Scotland) Act 2019

Update on implementation

Sharon Grant gave an update on the implementation of the Human Tissue (Authorisation) (Scotland) Act 2019. It was noted that the Act and the associated Guidance and Regulations would come into force on Friday 26 March. NHSBT and SNBTS were reported to be operationally ready for the change and all key NHS Scotland staff had been trained in the new legislation. A public information awareness campaign had been running since November 2020 and included television and radio advertising as well as a leaflet drop about the law change to every household in Scotland.

Early indications showed that, as a result of the campaign, the number of opt out registrations had increased. However there had also been a significant number of new registrations from people opting in to the NHS Organ Donor Register.

On behalf of the group, the Chair thanked Sharon Grant, Implementation Team Lead, and her team for their hard work in getting to this point and emphasised that he was confident that people were more informed about their choices around organ and tissue donation.

The group also thanked Lesley Logan and Neil Healy for delivering a successful training programme to key NHS Scotland staff and to NHSBT staff.

It was noted that SDTG would have a key role in discussing any changes to Regulations if the need for updates was identified at a later date.

Post-2020 plans

Scottish action plan

Sam Baker apologised to the Group for the delay in publishing the Action Plan. She confirmed that the Plan would be published on the 24 March 2021. She noted that some of the recommendations had been already been delivered, however these remained in the plan as they still require ongoing work.

Sam Baker talked through the priorities and invited comments from the group.

Priority 1 - Implementation of the Human Tissue (Authorisation) (Scotland) Act 2019

While the awareness raising and staff training was now complete, there was some additional work required around awareness raising with specific target audience groups and an ongoing need to continue raising public awareness and refreshing training as needed.

Priority 2 - increasing organ transplantation

The use of novel technologies is a key focus of this priority as well as closer joint working between transplant units to increase organ utilisation and increasing the equity of access to transplantation across Scotland.

It was noted that there had already been significant progress in collaboration between the Edinburgh and Glasgow renal centres, and more regular cross site working was being developed to ensure that patients would not miss out on transplants in future due to logistical issues.

On organ utilisation, John Forsythe noted that NHSBT was proposing via the forthcoming UK Strategy that Clinical Leads for Organ Utilisation should be made permanent.

In relation to disparities in aftercare and equity of access, long distance travel was noted as being a barrier for some people and it was recognised that there should be better information for patients on when they can claim reimbursement of travel expenses as the process was complex and there should be more information in cases where subsidised accommodation may be available for patients or their family members.

Priority 3 - reducing missed opportunities for deceased donation

It was noted that the Specialist Requester model was showing improvements in authorisation rates; Susan Hannah agreed that Specialist Requesters would always ensure tissue donation is discussed with families whose loved one may be eligible to be a tissue donor. It was noted that the closer working between SNODs and Tissue Donor Co-ordinators was a positive step towards reducing missed opportunities for tissue donation. Further work to increase awareness raising with other NHS staff about referral of potential tissue donors was discussed, but it was noted that this should be post-pandemic.

Priority 4 - increasing living donation and reducing the wait for a kidney transplant

Although the pandemic has had an impact on living kidney donation, the key ongoing priorities would be encouraging those who need a kidney transplant to consider and explore options for a living donor transplant as their first transplant and resuming home visits to people needing a transplant and their key family members to give them more information on living kidney donation.

Priority 5 - transplant recipient support and aftercare

It was highlighted that it would be useful to include patient representatives in taking forward work around this priority. It was also noted that some transplant recipients had some issues accessing local support, particularly during the pandemic. It was also noted that the pandemic had seen some progress establishing telemedicine as part of services so this would hopefully help reduce unnecessary travel for patients in future. It was also noted that useful technology is now available e.g. for patients to carry out tests at home and for the results to be shared with their clinical team via an app.

Priority 6 - research and innovation

It was noted that there was a requirement to continue to support research in relation to organ and tissue transplantation and regenerative medicine and to increase public awareness about the benefits of donating organs or tissue for research.

Priority 7 - public health improvement

This was noted as being a long-term priority involving Public Health Scotland and health improvement teams. This was focused on seeking to reduce the need for transplants in the cases where transplant or organ failure could be prevented or reduced (but recognised that many cases of organ failure were not preventable).

UK strategy

Anthony Clarkson commented that the Scottish plan will complement the new draft UK strategy. He reported that NHSBT had approved the UK Strategy and that Health Ministers in the four nations were supportive of its publication. NHSBT was still seeking to agree when the Strategy could be published.

National Services Division (NSD) post-2020 commissioning plan

Bryan Davies provided a short update on the NSD post-2020 commissioning plan and the interim Covid recovery plan. He advised that NSD had recruited an external consultant to review capacity and map the abdominal organ transplant services to help understand and identify any pressure points in the system.

This work will inform future commissioning going forward to ensure sustainable service provision. Mr Davies agreed to provide a further update on progress at the next meeting.

Coronavirus (COVID-19) – update on current issues

The Edinburgh Transplant Unit reported that they were fully open for all transplants.

The Golden Jubilee National Hospital reported that they were also fully open and had carried out five heart transplants in the previous four weeks. The patients were reported to be doing well.

The West of Scotland Transplant Unit was open, but had been affected by Covid pressures. It was expected that services would be back to normal within the next 4-6 weeks, although living donor transplants via the Living Kidney Sharing Scheme would take longer to get back to normal.

There was some discussion about the efficacy of specific COVID-19 vaccinations for solid organ transplant recipients. Reference was made to a small study in the US on this matter, which was a cause for concern for transplant recipients.

The importance of communicating and sharing information to transplant recipients on the effectiveness of COVID-19 vaccinations was noted and it was agreed to raise this matter with the Senior Medical Officer for vaccines in the Scottish Government and with the Clinical Leads Advisory Group for Scotland.

Action: Sharon Grant to raise with Senior Medical Officer/John Casey to raise with Clinical Leads Advisory Group for Scotland

Update on donation/transplant activity

Living kidney donation

Jen Lumsdaine reported that the numbers of living donors had been lower in 2020/21 than in previous years due to the impact of the COVID-19 pandemic.

In particular two living donor kidney matching runs via the UK Living Kidney Sharing Scheme had been postponed due to the pandemic, which had affected numbers.

Paediatric transplantation

Dr Ben Reynolds reported that 2020/21 had been very busy. Availability of sufficient psychology services was noted as a continuing area for concern for paediatrics.

Living donation from minority ethnic groups was also reported to be an area for further improvement work.

Deceased organ donation

Susan Hannah noted that there had been a drop in the number of eligible deceased donors of around 28% in Scotland during 2020-21, which was similar to other areas of the UK.

The authorisation rate in Scotland was 72.7% for the financial year so far, with overrides by family members of a person’s decision to join the Organ Donor Register at the lowest level recorded.

The SNOD team was taking forward the action plan following the law change, identifying good practice. Susan Hannah thanked CLODs and ICUs for their support as well as the families of potential donors.

Tissue donation was noted as having lower referral rates, but a similar number of donors to the previous year.

AOB

Update to agreement between the Procurator Fiscal Service and SDTG

Sam Baker advised that the updated agreement between the Procurator Fiscal Service and SDTG had been published on the Scottish Government website and the link circulated to the group with the papers.

Apart from including information on the opt out system, there were only minor changes to the agreement. She asked the group to ensure that their teams were aware of the updated document.

Group 1 and 2 patient status post-EU exit

John Forsythe noted that the rules around whether patients were in Group 1 or Group 2 had been amended slightly following the end of the transition period and was keen to ensure transplant units were aware of this.

Action: Ms Sam Baker to distribute the updated NHSBT Directions to transplant centre leads.