Scottish Donation and Transplant Group meeting: August 2021
Minutes and documents from the group's meeting on 19 August 2021.
Attendees and apologies
- Mr John Casey (Co-chair), Joint Chair and Clinical Advisor for Transplantation in Scotland
- Dr Iain Macleod (Co-chair), Joint Chair and Clinical Advisor for Organ Donation in Scotland
- Dr Richard Appleton, Consultant in Anaesthesia and Critical Care, Scottish Intensive Care Society
- Mr John Asher, Consultant in Anaesthesia and Critical Care
- Lisa Burnapp, President of British Transplantation Society/ OTDT Medical Team: Associate Medical Director
- Dr Colin Church Consultant, Golden Jubilee National Hospital
- Anthony Clarkson, Director of Organ Donation and Transplantation, NHSBT
- Dr Jonathan Dalzell, Consultant Cardiologist, Golden Jubilee National Hospital
- Adam Duncan-Rusk, Business Manager, Renal, Transplant and Dermatology
- Professor John Forsythe OTDT Medical Team: Associate Medical Director, NHSBT
- Dr Colin Geddes, Chair of the Transplant Recipient Support and Aftercare working group, NHS Greater Glasgow & Clyde
- Sharon Grant, Team lead for Organ and Tissue Donation Policy, Scottish Government
- Susan Hannah, Regional Manager for Scotland, NHSBT
- Neil Healy, Lead Nurse for Tissues, Cells and Advanced Therapeutics, SNBTS
- Stephen Kirkham, Patient representative
- Dr Ann-Margaret, Little Consultant Clinical Scientist, NHS Greater Glasgow & Clyde
- Jen Lumsdaine, Living Donor Co-ordinator, NHS Lothian
- Mr Alex McGuire, Golden Jubilee National Hospital
- Andrew McKie, Secretariat, Scottish Government
- Dr Ben Reynolds, Consultant Paediatric Nephrologist, NHS Greater Glasgow & Clyde
- Dr Lesley Ross, Patient representative
- Joanna Swanson, Interim Head of Health Protection Division, Scottish Government
- Dr David Walbaum, Consultant Nephrologist, NHS Grampian
- Linda White, Policy Manager, Organ and Tissue Donation and Transplantation, Scottish Government
- Dr Sharon Zahra, Clinical Lead, Tissues, Cells and Advanced Therapeutics, SNBTS
Apologies
- Lynne Ayton, Head of Operations, Golden Jubilee National Hospital
- Sam Baker, Donation Policy Branch Head, Scottish Government
- Dr Andrew Bathgate, Consultant Hepatologist, NHS Lothian
- Mr Marc Clancy, Consultant Renal Transplant Surgeon, NHS Greater Glasgow & Clyde
- Dr Martin Johnson, Consultant Physician, Golden Jubilee National Hospital
- Professor Deirdre Kelly, NHSBT
- Roseanne McDonald, Associate Director for Specialist Services and National Planning, NHS National Services Scotland
- Mr Gabriel Oniscu, Consultant Transplant Surgeon and Clinical Director, Edinburgh Transplant Unit
- Dr Neal Padmanabhan, Consultant Nephrologist, NHS Greater Glasgow & Clyde
- Ms Jessica Porter, Head of Regulation, Human Tissue Authority
- Mark Print, Patient representative
- Dr David Turner, Consultant Clinical Scientist, SNBTS
- Andrew Walls, Organ Donation Regional Committee Chair, NHS Dumfries & Galloway
- Dr Charles Wallis, Regional CLOD and Consultant in Intensive Care Medicine, NHS Lothian
In attendance
- Peter Croan, NHS National Services Scotland
- Professor Stephen Powis Chair of the UK Organ Utilisation Group, NHS England
Observing
- Susan Buchanan Director, National Specialist Services and Screening Division, NHS National Services Scotland
Items and actions
Welcome, introductions and apologies
John Casey welcomed attendees to the meeting. He noted that Marie Gardiner, Professor Stephen Wigmore, Professor John Forsythe, Bryan Davies and Marc Clancy have moved on and thanked them for their valued contributions to the group.
He welcomed Adam Duncan-Rusk, Lisa Burnapp, Roseanne McDonald and John Asher, who have taken their respective places, to the group. He also welcomed Professor Stephen Powis, Medical Director of NHS England and Chair, who was providing an update, under agenda item 3.1, on the newly established UK Organ Utilisation Group, of which he is Chair.
Minutes of meeting of 23 March 2021
The minutes from the 23 March 2021 meeting were agreed.
Post-2020 Plans
UK Organ Utilisation Group update
Professor Stephen Powis and Professor John Forsythe presented on the UK Organ Utilisation Group (OUG), established by the Secretary of State for Health and Social Care with the aim of delivering recommendations on how to maximise the potential for organ transplantation in the UK.
He highlighted that there was multi-disciplinary representation on the group and that there would be comprehensive engagement with stakeholders: suggestions on who engagement would be welcome. Four sub-groups are also being established to provide additional expertise and insight. The SDTG was also informed that there would be a national and international evidence based review, a stakeholder forum to share information/ seek views and a website to provide updates.
The indicative timeline on the activity of the group, was to report to UK Ministers by the end of the first quarter of 2022.
Professor Forsythe provided context for the work of the OUG, noting that prior to the COVID pandemic, there had been improvements in donation in the UK, specifically around donors, transplants and number of people on the transplant waiting list particularly in respect of DCD donation.
Professor Powis sought views on how best the OUG could engage with SDTG members and relevant interests in Scotland including issues that might be Scottish specific. He was keen to ensure that Scotland fed into discussion on common themes, such as access to ICU bed, reasons for organs being declined and variations between units, mutual aid, standards for transplantations and support services.
John Casey acknowledged the common themes and agreed that it would benefit all to share information.
Dr Iain Macleod enquired if there was any donor family involvement in the OUG. Professor Powis advised that this would be considered through membership of one of the sub-groups or stakeholder involvement.
UK Strategy update
Anthony Clarkson provided an update on the UK Organ Donation and Transplantation Strategy, highlighting that it was published on 05 June and thanked everyone involved in the drafting of the strategy.
Based on the initiatives highlighted in the UK strategy, strategic plans are being grouped into a four key programmes with varying timescales, which cover deceased donation, living donation, organ utilisation and integrating organ and tissue transplantations together within NHSBT. Further details will be shared at the next meeting.
NSD Commissioning Plan post-2020
Peter Croan presented on the Post-2020 NSS Bridging Plan. He gave his thanks to service staff and patients for their time and commitment in bringing together the information and asked members to feedback any views on the information provided by 31 August.
The final plan will feed into the future strategy that is being developed by NSD and will highlight to various organisations what their responsibilities will be in delivering the strategy.
Prior to the COVID pandemic, it was the intention to publish a five-year Commissioning Plan to progress the objectives of both the UK Strategy and the Donation and Transplantation Plan for Scotland. However, as a result of the ongoing pressure on services as a result of the pandemic, it was decided to develop a Bridging Plan (up to 2 years) to the Commissioning Plan to help services maintain their current transplant provision.
To help inform the recommendations in the plan, NSD undertook a capacity review of Abdominal Organ Transplant Services - for Liver, Pancreas, Kidney (East and West) and Islets. A capacity review for Cardiothoracic Transplant Services (heart, lung, paediatric renal) had not yet been undertaken however activity data from all services’ reviews and annual reports was included in the analysis.
The next steps include developing an action plan with each of the service areas identified in the Bridging Plan and a five-year strategy for each of the individual transplant areas.
NSD welcome feedback on the plan from transplant units and the wider transplant community and intend to arrange a series of further meetings to gather views.
It was agreed to share the final version of the plan and supporting information with the OUG.
Action 1
Copies of the final version of the NSD Commissioning and Bridging Plan to be sent to the UK Organ Utilisation Group – Scottish Government
Donation and Transplantation Plan: 2021-2026 Implementation
Implementation Overview
Iain Macleod provided a brief overview of the outcomes of the Scottish Donation and Transplantation plan, noting that the key focus at present was on the short term priorities. To date, good progress has been made on the actions around living kidney donation and tissue donation. An additional three working groups have been established to look at the key priorities to come out of the plan.
Highlight Reports: Priorities 3.3 and 3.4
Priority 3.3: Increased opportunities for tissue donation
SNBTS have been working to expand their Potential Donor Audit (PDA) into additional hospitals to get as much robust data as possible and raise awareness of tissue donation with ICU staff, through methods such videos and tissue ID cards with the aim of increasing referral rates.
Engagement was also underway with units and hospices with a view to raise awareness of eye donation. Additionally, SNBTS were working with Dundee medical school to add eye donation to their end-of-life care training. Mr Neil Healy noted that tissue referral rates have been lower than would normally be anticipated due to COVID, but tissue retrieval had nevertheless remained robust.
Priority 3.4: A robust eye retrieval service for Scotland and increased eye donation
Corneal and sclera transplants are being tracked and matched with the number of eyes retrieved. As SNBTS are not responsible for the full end to end process for eye donation in Scotland they are working with NHSBT to improve the level of data and statistics they gather, to allow proper tracking of eye donation and transplantation in Scotland.
SNBTS are also looking to raise public awareness of the importance of eye donation, including working with Scottish Government on preparations for Organ and Tissue Donation Week at the end of September, which coincides with National Eye Health Week
Highlight Reports: Priorities 4.2 and 4.3
Priority 4.2: Rolling out of the Renal Education and Choices at Home (REACH) programme
The REACH programme had concluded a successful pilot in NHS Lothian with high level results from participants reflecting an increase in knowledge, particularly with people from lower socio-economic backgrounds.
There were 86 visits during the pilot which took place between November 2018 to February 2020. It was noted that out of the first 86 visits 78 potential donors had come forward for assessment, so results are encouraging.
To allow the REACH programme to be rolled out, an evaluation and implementation report has been prepared for the Scottish Government.
Priority 4.3: Adequate Staffing levels in Renal Units to support living donation
Work was underway with Nephrology teams to identify the staffing levels needed to support living kidney donation.
Highlight Reports: Priority 2.2
Priority 2.2: Build a sustainable, patient-centred transplant service in Scotland
John Casey reported that elements of priority 2.2, would be taken forward by a group that had initially been established at the start of the pandemic to address issues caused by the pandemic. As part of its work to develop collaborative working, the group would be looking at how to allow both transplant units and referring clinicians to be able to access and share patient information more easily.
Work was also underway to discussions with the Chief Scientists’ Office about how this might be approached, included the proposal for the establishment of a Scottish Transplant Research Network.
Discussions had also taken place with the Chief Scientists’ Office and NHSBT about future National Institute for Health Research (NIHR) grant awards in the UK. NHSBT has agreed to involve SDTG at an early stage around any future funding calls for research on transplantation.
Highlight Reports: Priorities 2.3 and 5.2
Priority 2.3: all patients likely to benefit from transplantation are offered the opportunity and priority 5.2: NHS Board staff know where to access advice from transplant unit staff and can access expert advice within a reasonable timescale
Andy Bathgate, the co-chair of the working group taking forward implementation of priorities 2.3 and 5.2 was unable to attend this meeting to provide and update. A co-chair is currently being sought for this working group.
Action 2
Co-chair for the working group taking forward priorities 2.3 &5.2 to be identified – SDTG Chair/ Scottish Government
Highlight Reports: Priority 5.1
Work to establish telemedicine and online support for those patients who need it to supplement local NHS Board support. (sub)
Lesley Ross and Colin Church are co-chairs of this working group. Lesley confirmed that development of the working group was in its early stages and membership is currently being agreed. She noted that this workstream was particularly patient focussed, and they intend to map services to see where the gaps are.
Colin noted that there was a bit of crossover with the work being done on the IT structure in Scotland and working with NHS Digital will be important to ensure that there is equity of access to Telemedicine for all patients and clinicians across Scotland.
Action 3
Identify crossover between the priority 5 working groups. Meeting to be arranged for Working group co-chairs – Scottish Government
Highlight Reports: Priority 5.3
Priority 5.3: NHS Boards/GPs have the expertise and ability to support patients locally post-transplant
Colin Geddes is co-chairing this working group, along with Stephen Kirkham, who has recently agreed to co-chair. It was welcomed that it was important that long term care was now a recommendation in the Scottish Plan and he highlighted importance of working with the other working group chairs to sure there is no duplication, as there is a lot overlap.
Colin highlighted the importance of evidence, rather than anecdote. It would be important to know what the common presentations to primary care and unscheduled care are and the pathways within each health board and how the links are made to transplant centres at present. It was suggested there would be a need to survey the opinions of an appropriate range of transplant patients about their feelings on unmet needs.
It was noted that this information may already be collected elsewhere so before proceeding this should be explored together with identifying gaps in the system.
It was agreed that GP input would be helpful, and to look into the work that was already being done in England, which relates to supporting patients locally post-transplant.
Action 4
Investigate how the working groups can get GP input to take this work forward – Scottish Government
Coronavirus (COVID-19)
Update on current issues
John Asher, representing the West of Scotland Renal Transplant service, noted that although transplants in 2020/21 was slightly below average, the figures for the first quarter of 2021/22 have been above average, compared to the first quarter of the last five pre-pandemic years. There were some staffing issues due to some staff needing to self-isolate and as a result there are some strains on the system at the moment.
Jonny Dalzell, representing the Golden Jubilee noted that the 2020/21 transplantation numbers of hearts were up, with figures continuing to rise and he highlighted that resources were already overstretched. Clinics are back up and running to levels they were before the pandemic and noted they were struggling with the amount of activity rather than with issues relating specifically to COVID.
John Casey provided the update from Edinburgh, reporting that all services were active and while figures were positive, there were issues around theatre staffing, particularly for liver transplantation, with theatre staff from Newcastle being brought in to help. However, generally donation and retrieval services were functioning normally at the moment.
Update from Clinical Leads Advisory Group (CLAG) meeting
John Casey provided background on the Scottish Government Clinical Leads Advisory Group (CLAG), which was initially set up as an advisory group for Shielding, but now advises on a number of difference issues relating to COVID.
Following questions raised at previous meetings, Sharon Grant provided an update on booster vaccinations for people who are immunosuppressed, including those that have received a solid organ transplant and the Scottish Government’s plans for communicating with people in the shielding categories.
Scottish Government are currently waiting for advice from the Joint Committee on Vaccination and Immunisation (JCVI) about booster vaccinations, with the current planning assumption in Scotland that administration of boosters will start at the same time as seasonal flu vaccine, expected to be around the end of September. In its interim advice, the JCVI suggested that patients who are immunosuppressed should be prioritised and it is likely that this will include those who have received a solid organ transplant. Once this has been confirmed this will be communicated with SDTG members.
Action 5
JCVI advice to be shared with SDTG once it has been published – Secretariat – Action completed
At a previous meeting the Scottish Government’s communication with patients who are Shielding was raised. It was reported that letters from the CMO’s office had been sent out to those in the higher risk lists in July and August. Another letter was planned for September which should also include information on booster vaccinations.
Action 6
CMO guidance on vaccination for severely immunosuppressed people to be shared with SDTG members when published – Secretariat – Action completed
Update on Donation/ Transplantation Activity
Living Kidney Donation
Jen Lumsdaine reported that there had been 40 transplants in Scotland so far this year, compared to 52 for the last financial year. Kidney Care UK is running a series of webinars for patient groups which includes information on living kidney donation. The next webinar is due to take place on 02 September.
Paediatric Transplantation
Ben Reynolds updated on paediatric transplantation and advised that activity was at normal levels.
Deceased Organ Donation
Susan Hannah provided a breakdown of the current figures for deceased organ donation, highlighting the efforts of the donation community in delivery during very difficult circumstances during the pandemic.
Eligibility numbers for the first quarter of this financial year was 84. Deceased donation was currently at 36, an increase compared to the same period in 2019/20 and 2020/21. From the 36 there have been 103 organs retrieved, with three DCD hearts, including the first paediatric DCD heart. Susan noted that the combined referral rate in Scotland was 98%, which was higher than the UK average of 94%.
John Asher noted that although the numbers in Glasgow last year were lower overall, the number of deceased donor transplants was their third busiest on record and this was despite the challenges brought by the pandemic and efforts made by the donation community under very difficult circumstances should be noted and are very much appreciated.
Sharon Grant addressed previously raised concerns about resource implications and recovery of units as a result of the COVID-19 pandemic. She advised that a five-year Recovery Plan will be published by the Scottish Government by the end of August. To support the plan, a National Workforce Planning Strategy will be developed by the end of this year, which will set out how the Scottish Government will support the workforce needed over the next five years. Operational delivery of the strategy will be delivered through the three-year operation workforce plan developed by employers.
Sharon Grant will discuss, with the Recovery Plan Team, a request on behalf of transplant units and SDTG to include specialist services particularly transplantation for inclusion in the recovery plan to ensure that it is not overlooked when workforce plans are developed.
Action 7
Recovery Plan Team to be contacted to request transplant units be included in their workforce planning – Scottish Government
Human Tissue (Authorisation) (Scotland) Act 2019
Monitoring and Evaluation requirements
Lilian Kennedy (Analytical Services Division, Scottish Government) presented on the monitoring and evaluation plan for the Act, providing an overview of the areas plan will cover, the intended outcomes and measuring the impact of the Act. She particularly highlighted the impact that COVID has had on the data landscape. Lilian stressed that a more detailed monitoring and evaluation plan will be published later this year.
Colin Geddes enquired whether the monitoring and evaluation plan would monitor living kidney donation, given anecdotal evidence shown in other countries that living donation dropped following the introduction of opt out.
Jen Lumsdaine commented that from working with patient groups, feedback from the publicity for opt out showed that patient expectations were increased, which meant that consideration of living donation may not be considered as a priority for patients. She suggested that this needs to be carefully monitored to understand if opt-out is having an impact on living donation.
Lilian highlighted that the primary outcome of the evaluation was looking at increasing the donation rate, which is tied to authorisation processes relating to donation after death. So, how much of an impact the authorisation process for deceased donation has on the conversation about living donation will need to be considered.
Sharon Grant noted that this is something that could be considered to identify if there is a link to there being a drop in interest about living donation. Scottish Government, would ask NHSBT if this was something that was being considered in England.
Action 8
NHSBT to be asked whether the increased attention given to deceased donation having an effect on living donation is being considered – Scottish Government
Any Other Business
Written Updates
John Casey referred the group to the written updates circulated with the papers.
Next meeting
The next meeting will take place on 18 November 2021 at 14:00, via Microsoft Teams.
Summary of Action Points
Action 1 - Copies of the final version of the NSD Commissioning and Bridging Plan to be sent to the UK Organ Utilisation Group – Scottish Government
Action 2 – Co-chair for the working group taking forward priorities 2.3 &5.2 to be identified – SDTG Chair/ Scottish Government
Action 3 – Identify crossover between the priority 5 working groups. Meeting to be arranged for Working group co-chairs – Scottish Government
Action 4 – Investigate how the working groups can get GP input to take this work forward – Scottish Government
Action 5 – JCVI advice to be shared with SDTG once it has been published – Secretariat – Action completed
Action 6 – CMO guidance on vaccination for severely immunosuppressed people to be shared with SDTG members when published – Secretariat
Action 7 – Recovery Plan Team to be contacted to request transplant units be included in their workforce planning – Scottish Government
There is a problem
Thanks for your feedback