Scottish Donation and Transplant Group meeting: December 2022

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 Renal Transplant Surgeon, NHS Greater Glasgow & Clyde
• Sam Baker, Donation Policy Branch Head, Scottish Government
• 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
• Anthony Clarkson, Director of Organ Donation and Transplantation, NHSBT
• 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
• David McIlhinney, Secretariat Scottish Government
• Dr Neal Padmanabhan, Consultant Nephrologist, NHS Greater Glasgow & Clyde
• Mark Print, Patient representative
• Dr Ben Reynolds, Consultant Paediatric Nephrologist, NHS Greater Glasgow & Clyde
• Dr Lesley Ross, Patient representative
• Dr Radha Sundaram, ICU Consultant and CLOD, Co-chair of the Transplant Recipient Support and Aftercare working group, NHS Greater Glasgow & Clyde
• Dr David Turner, Consultant Clinical Scientist, SNBTS
• Dr Helen Tyler, Regional CLOD and Consultant in Anaesthetics & Intensive Care Medicine, NHS Forth Valley
• Dr Sharon Zahra, Clinical Lead, Tissues, Cells and Advanced Therapeutics, SNBTS

In attendance

• Amanda Forbes, Golden Jubilee National Hospital
• Anushka Govias-Smith, Programme Manager, National Specialist and Screening Services
• Orla Hobson, REACH Transplant Programme Lead, NHS Lothian
• Claire Williment, Accountable Executive: Organ Utilisation Programme, NHSBT

Apologies

• Lynne Ayton, Director of Operations Heart, Lung and Diagnostics Division, Golden Jubilee Hospital
• 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 & Clyde
• Andrew McKie, Secretariat, Scottish Government
• Dr Shona Methven, Consultant Nephrologist and Renal Service Clinical Director
• Jessica Porter, Head of Regulation, Human Tissue Authority
• Dr Sinéad Power, Interim Head of Health Protection Division, Scottish Government
• Dr David Walbaum, Consultant Nephrologist, NHS Grampian
• Andrew Walls, Organ Donation Regional Committee Chair, NHS Dumfries & Galloway
• Linda White, Policy Manager, Organ and Tissue Donation and Transplantation, Scottish Government
• Peter Wyman, Chairman, NHSBT

Items and actions

Minutes of meeting of 18 August 2022

The note of the previous meeting was agreed.

James How and Jen Lumsdaine updated on progress on the two actions from the last meeting, noting firstly that discussions have taken place about raising awareness of living donation, and secondly that discussions are ongoing between the Scottish Government policy team and the Analytical Services Division in the Scottish Government about including living donation figures as part of the overall ongoing evaluation of the opt-out legislation.

Donation and Transplantation Plan: 2021-2026 implementation

Updates on implementation of the plan

John Casey 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

Neil Healy updated on increasing opportunities for tissue donation, noting that there had been 69 referrals from August to October 2022 (up 17 from 52 in the previous quarter). Fourteen of these referrals progressed to tissue retrieval. Of the 69 referrals, there were three occasions (down from eight) where relatives declined/were unavailable to discuss or authorise donation.

Neil also updated on ensuring a robust eye retrieval service for Scotland and increasing eye donation, noting that in the current financial year there have been 105 corneal and 3 sclera transplanted in Scotland. SNBTS is currently working with NHSBT and the Scottish SNODs to trial an eye donation programme in Glasgow. NHSBT have committed resources to improve data collection and reports are becoming available.

Authorisation for organ donation

Susan Hannah briefed that, whilst there has been some improvement in donor eligibility in comparison to last year, this has not resulted in higher donor numbers. The combined authorisation rate remains low. The DCD authorisation rate is 53%, nearly 30 percentage points lower than DBD, with 82% (which is the highest in the UK). We need to explore further to understand this variance. Donor eligibility and numbers have not improved in Scotland in comparison to the pre-pandemic situation, with Scotland the lowest in the UK with 15 donors per million population (pmp), which is proving difficult to influence at a time when NHS pressures have impacted the donation pathway. Questioned about whether the 15 pmp figures was mainly due to the pandemic, Susan pointed to a variety of factors.

Updating on the monitoring and renewing of the specialist requestor (SR) model, Susan stressed the continued encouragement being given to units to ensure SR involvement in donation conversations, which will be further supported with SR roadshow education for hospitals, including highlighting training resources (TURAS). Due to training needs of several new staff, there has been an impact in this period on the number of times an SR was involved in an approach.  In addition, some medical staff continue to prefer not to include an SNOD (specialist nurse)/SR during conversations, leading to organ donation approaches without the SR, which is more evident with DCD.

Living Kidney Donation: REACH transplant and renal units staffing levels

Jen Lumsdaine noted that following the appointment of Orla Hobson, the programme lead, recruitment of REACH Transplant specialist nurses within each renal unit is ongoing, with all nurses expected to be in post by early in the new year.

Linked to the ongoing work on ensuring adequate staffing levels in renal units to support living donation, Jen said that two issues had emerged at the Living Donor Forum meeting on 2nd December: radiology waiting times and the availability of Independent Assessors. Jen noted that an Independent Assessor training event was planned by the HTA and that MRA (magnetic resonance angiography) waiting lists are longer in some areas than others. John Casey asked if we need a national recruitment campaign for Independent Assessors, and Jen agreed that we needed a more formal and structured approach to this problem. Roseanne Macdonald stressed the importance of data in solving these issues and said that Health Improvement Scotland’s economic report might be useful in this context and requested that timescales from HIS be clarified and reported back.

Sustainable, patient-centred transplant services

John Casey updated on work to ensure appropriate, secure IT is in place to allow both renal transplant units and referring clinicians to be able to access and share patient information more easily, drawing attention to the work of the Covid-19 planning group and stressing that IT and data are ongoing issues in the units.

Equity of access to transplantation services

Andy Bathgate noted that it may not be possible in the short term to gather the data on equity of access that the working group had hoped to gather, and that instead they may require a prospective approach with projects such as the National Cardiac Audit. In tandem they will look to identifying areas within Scotland not served by outreach clinics, exploring potential champions, and correspond with national societies to increase awareness of transplant services with their respective memberships.

John Casey said that a huge amount of work had clearly already been taken forward, and that it made sense to use what data we have readily available to inform what we do. Roseanne Macdonald said that NSD would share reporting data if that would be helpful.

Aftercare for transplant patients

Lesley Ross updated that the working group, building on the earlier patient focus groups, was now working to put together a patient survey due to be delivered via Citizen Space. Claire Williment advised that it would be important to include gender in the survey; Sam Baker noted it would be possible to seek personal data in the survey, but in line with data protection legislation the Scottish Government would have to show why this information was needed. Lesley said the working group was also looked at information for patients currently available on relevant websites, looking to build up a complete picture of the support available to patients.

Clinicians have the right expertise to support patients locally

Colin Geddes said the working group supporting this action was also looking to develop a survey of those delivering primary and secondary care and have now identified the resource to do this. They will be meeting in 3rd week of January to further discuss the survey.

Research and innovation

John Casey updated that work has progressed well with appointing a Transplant Research Manager, with Scottish Government funding now approved. It is hoped that the post will be advertised soon, ensuring that work under this action is taken forward.

Annual progress report on implementation of the plan

James How presented the first annual progress report on implementation of the Scottish Transplantation and Donation Plan 2021-26, which he said drew on all the useful updates provided above. The progress report is due to be published on the Scottish Government website, and comments on the update in writing were welcome.

Post-2020 plans

UK Organ Utilisation Group update

Claire Williment updated that the report of the Group had now been completed and it was hoped that it would be published in the near future.

UK strategy update

Anthony Clarkson reported that donor numbers were still 10% down on the pre-pandemic situation, as is the number of eligible donors. NHSBT is engaging in a donor audit to try to see why the situation is as it is. Funding is also impacting on delivery of the Strategy. NHSBT is running at a deficit but do have some underspend from last year that they are able to utilise, so can function at current activity levels at present. But once they have used their cash reserves, they will have a significant deficit. They are looking at how to deal with that situation. They expect that only a limited digital transformation will be possible as a result.

NSD update

Roseanne Macdonald updated on NSD’s proposal for a form of transplant strategic network, which they are now proposing will be on a smaller scale than the trauma network. They will propose to establish a new steering group to report in to SDTG, with a series of working groups under it. The proposal will be to bring all the existing working groups under the Plan under this steering group. NSD are currently working on a proposal which they intend to discuss with the Scottish Government in the new year.

Report on transplantation patient focus groups

Lesley Ross updated on the patient focus groups carried out by the Alliance and NSD, which had taken place in April, with a report produced in August 2022. The aim was to identify what transplant patients need from transplant services. Overall, there were 52 participants, with results grouped according to organs.  Coming through clearly as themes were emotional and psychological support and difficulties with communication, education and advice.

In terms of how to take the results forward, Lesley noted that some aspects were outside the scope of the current plan. NSD will have a role in taking forward the findings which are captured in the NSD bridging plan. Workshops have taken place with the services following the report and they are now working with the services on implementation plans. NSD will track progress.

Evaluation of 2022/23 marketing campaigns

Clare Livingston updated on the campaign evaluation of ‘Don’t leave your loved ones in doubt’, the objective of which had been to encourage more people to make their donation decision and make it known (register / tell their family). The marketing approach had been to move on from the creative approach of the 2021 public information campaign around the law change - to allow more focus on making people understand the importance and emotional benefit of making their decision known to their loved ones (whatever that decision is). The main campaign ran in July/August and included TV, radio and digital. PR and paid digital activity ran for during Organ & Tissue Donation Week at the end of September.

In terms of impact of the campaign on organ donation registrations, 12,449 people registered on the ODR in August (during the main campaign period). This was a 68% increase on the previous month (7,404) and was the highest number of monthly registrations since May 2021 (post law change). 59% of people registering on the ODR during August opted in, while 41% opted out. 56% of the Scottish population are now on the ODR, compared to 53% at the end of the previous year’s (opt out) campaign. 52.9% have opted in, while 3.1% have opted out. All health boards with the exception of Western Isles now have over 50% of their population registered on the ODR.

Clare also briefed on activity during Organ and Tissue Donation week, with the following objectives: (1) Contribute to an increase in the number of people who have made their organ and tissue donation decision known; (2) Educate on the choices people have under an opt out system of organ and tissue donation; (3) Create engaging content for media and social media to drive discussion and registration; (4) Drive traffic to the Organ Donation Scotland website. Clare drew attention to some of the positive media and social media responses to this activity.

Update on donation/transplantation activity

Living Kidney Donation

Jen Lumsdaine briefed on the living organ donation campaign and said she was hoping for higher numbers of donations this year as a result of the campaign. She drew attention to some positive media responses to the campaign. Jen also raised the issue of low return rates for donor healthcare questionnaires, and said they would be investigating the reasons behind poor response rates.

Paediatric transplantation

Ben Reynolds briefed that activity was fairly stable, with a low organ decline rate.

Deceased organ donation

Susan Hannah briefed that it was hard to know if NHSBT will meet the 2022-23 NHSBT target of 102 deceased donors. John Casey added that it was clear transplants numbers were up.

Tissue donation

Sharon Zahra briefed that eye donation was down, but that SNBTS was working with NHSBT to see what we can do to mitigate the situation. It was busy in terms of islet donations, but availability of bone donations was a concern due to ongoing pressures on elective operations. Sharon added that the FAIR recommendations approved by SaBTO (the Advisory Committee on the Safety of Blood, Tissue and Organs) for individualised assessment of tissue and cell donors have been signed off by Scottish Ministers, but not yet by UK ministers, so still waiting on the UK wide guidelines to be updated.

Any other business

There was no 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 16 March 2023, 14:00 to 16:00, Microsoft Teams meeting.

Papers

Written updates