Attendees and apologies
- Dr Iain Macleod, Joint Chair and Clinical Adviser for Organ Donation in Scotland
- Mr John Casey, Joint Chair and Clinical Adviser for Organ Transplantation in Scotland
- Ben Hume, Assistant Director - Strategy, Organ Donation & Transplantation (ODT), NHSBT (attending for Anthony Clarkson)
- Dr Charles Wallis, Regional Clinical Lead for Organ Donation
- David Turner, Consultant Clinical Scientist, SNBTS
- Dr Andrew Bathgate, Consultant Herpetologist, NHS Lothian
- Dr Lesley Ross, Patient Representative
- Jen Lumsdaine, Living Donor Co-Ordinator
- Professor John Forsythe, Associate Medical Director ODT, NHSBT
- Mr John Payne, Consultant Cardiologist GJNH (attending for Nawwar Al-Attar)
- Keith Rigg, NHSBT Board Member
- Linda White, Policy Manager, Scottish Government (SG)
- Mr Marc Clancy, Consultant Renal Transplant Surgeon, NHS Greater Glasgow & Clyde
- Marie Gardiner, Service Manager, Renal, Transplant and Dermatology, NHS Lothian
- Sharon Grant, Implementation Lead - Opt out, SG
- Neil Healy, Senior Nurse for Tissue Services, SNBTS
- Peter Croan, Programme Associate Director: Head of Finance & Operations, NSD, NHS NSS
- Professor Stephen Wigmore, President, British Transplantation Society
- Roseanne McDonald, Programme Associate Director: Nursing and Quality Adviser, NSD
- Sam Baker, Donation Team Leader, SG
- Dr Sharon Zahra, Clinical Lead, Tissues and Cells, SNBTS
- Susan Hannah, Regional Manager (Scotland), NHSBT
- Andrew Walls, Donation Committee Regional Chair, Dumfries & Galloway
- Dr Alastair Innes, Consultant Respiratory Physician
- Ann-Margaret Little, Consultant Clinical Scientist, NHS Greater Glasgow and Clyde
- Anthony Clarkson, Director of Organ Donation and Transplantation, NHSBT
- Professor Anthony Warrens, Consultant Renal Physician, Human Tissue Authority
- Dr Heather Maxwell Consultant Paediatric Nephrologist, NHS GGC
- Dr Stephen Cole, Consultant in Intensive Care Medicine
- Jessica Porter, Head of Regulation, Human Tissue Authority
- Mr Derek Grieve, Interim Head of Health Protection Division
- Mr Gabriel Oniscu, Consultant Transplant Surgeon, NHS Lothian
- Mrs Lynne Ayton, Head of Operations, Golden Jubilee National Hospital (GJNH)
- Neal Padmanabhan, Consultant Nephrologist, NHS Greater Glasgow and Clyde
- Professor Nawwar AlAttar, Consultant Cardiac and Transplant Surgeon, GJNH
- Stephen Kirkham, Patient Representative
- David McIlhinney Policy Officer, SG
- Lesley Logan NHS Opt Out Implementation Manager, SG
Items and actions
Item 1. Welcome and apologies
1. Mr John Casey welcomed the attendees to the meeting and made introductions. Apologies were noted as above.
2. Mr Casey noted that Mr Keith Rigg was due to retire in early 2020 and this meeting would be his last as a member of the SDTG. Mr Casey thanked Mr Rigg for his long service as part of the group.
Item 2 . Minutes of previous meeting and Matters Arising
3. The minutes were accepted as an accurate reflection of the previous meeting.
4. Mr Casey noted that use of organ from donors with hepatitis c (HCV) was now being rolled out across abdominal transplant units for those HCV negative recipients who consented to consider an HCV positive organ. He further noted that transplant units must opt in and reminded transplant units to complete the relevant forms to do this.
5. It was noted that there had been little progress in relation to psychological support resources in NHS Boards. Ms Baker indicated that the Scottish Government would continue to look into this as part of the section of the post2020 Scottish Plan on aftercare.
6. Ms Baker noted that, in relation to the discussion at the previous meeting about donation where the potential donor is pregnant, the Chief Medical Officer had written to Professor Forsythe to confirm that the Scottish Government was content with NHSBT’s proposals. This meant that donation could proceed via circulatory death where it was agreed that treatment should be withdrawn and that the fetus was not viable.
Item 3 Human Tissue (Authorisation) (Scotland) Bill Update and Discussion
Item 3.1. Implementation update
7. Ms Grant gave an update on progress with implementation. She reported that public awareness work was a large part of the team’s work. Marketing colleagues were running a programme of focus groups to test scenarios for the public information campaign and the content of the household information leaflet. Public understanding of opt out was also being measured to provide a baseline for future analysis of the effectiveness of the public awareness campaign.
8. Ms Grant reported that design work was underway for the household leaflet drop required by the opt out legislation. There was also ongoing work to develop a new Organ Donation Scotland website containing information on the opt out system for deceased and living donation.
9. Ms Grant reported that the implementation team was working with stakeholder organisations to distribute information. The team planned to disseminate information to these groups at planned times over the period leading to implementation, ahead of the main public information campaign.
10. Ms Grant reported that work was ongoing on three sets of regulations that would need to be approved by parliament. Progress was reported as follows:
11. Type A Procedures: The consultation on this ended on 17 December, with 19 responses received. Analysis was reported to have commenced. It was planned to work with a small group of clinicians to consider the suggestions received via the consultation.
12. Type B Procedures: Work was reported to have commenced on these regulations and they were expected to go through a similar process of consultation in future. The aim was to have these regulations in place as soon as possible after opt out was implemented. This timetable would however depend on the Parliamentary timetable.
13. Excepted Body Parts: These regulations were reported to be similar to the regulations in place in Wales and proposed for England, reflecting what body parts may not be deemed under the opt out legislation.
14. Professor Forsythe paid tribute to the collaborative effort on the legislation. He noted that opt out in England was still planned for a late spring roll out. Finally, he reported a spike in opt outs during November driven by a WhatsApp message that had circulated, primarily among the BAME communities. NHSBT have done as much as they can to point out factual errors in the message, but this was expected to be difficult to tackle. At the time of the meeting there was just over 1 million opt outs recorded in the UK, with an eventual expected number of between 3.25 and 3.5 million opt outs.
Item 3.2. Deemed Authorisation Training Roll-out
15. Ms Logan presented on the plan to train the workforce on the opt out legislation. This was focussed on NHS staff whose roles are directly affected by the law change. There would be as many face to face sessions as possible, with a national training slide set developed, which will be hosted on the NHS Education for Scotland website, along with an online tool so clinicians who have attended the face to face sessions can cascade the training to staff in their departments.
16. The priority was to train specialist nurses, tissue donor coordinators and clinical leads before cascading to staff who support the processes, including ICU nurses and non-clinical staff to raise their awareness around donation and opt out. This would involve engaging 35 professional groups in the training programme.
Item 4. A Donation and Transplantation Plan for Scotland - Implementation Plan
4.1 Position Update
17. Dr Macleod provided an update on the current Plan. He reported that NHS Grampian had written to NHS Orkney and NHS Shetland to encourage their engagement in the NHS Grampian Organ Donation Committees, while NHS Highland had invited NHS Western Isles to join their Committee. He and the Scottish Government would continue to follow this up with those Boards. Dr Macleod further reported that, while proposals to pilot a ‘whole hospital approach’ had been discussed within NHS Grampian, as the Donation Committees were now effectively following a whole hospital approach to donation following the Organ Donation Committee review, it was felt that it was no longer necessary to take forward this pilot.
4.2 Living Kidney Donation
18. Ms Lumsdaine reported that the Living Donation Link Nurses and Nephrologists meeting on 6 December 2019 was very successful, as was the kidney charities event on 12 December. Ms Lumsdaine reported concerns that patients believed that there would be plenty of kidneys once the opt out legislation had been implemented. It was agreed at the kidney charities event that it was important to give patients messages about opt out as well as continuing to promote living donation and ensure patients understand that a living donor transplant is likely to offer the best outcomes for them. It was also noted that it was agreed at the kidney charities event that the charities would be given a toolkit to use to ensure consistent messaging is disseminated to patients across Scotland.
Item 5. Post-2020 Strategies/Plans – Updates on Progress and Discussion
5.1 UK Strategy
19. Mr Ben Hume provided an update on the progress in developing a UK-wide post-2020 strategy. He noted that organ donation and transplantation was moving into an era where there could be increasing benefits from clinical technology, such as NRP (normothermic regional perfusion) for livers and DCD heart transplants. This was expected to improve quality and availability of organs.
20. To support this, NHSBT identified a need for a lot more deceased and living donors, as well as breakthroughs in organ preservation and regeneration. It was estimated that an additional 1000 transplants could be carried out every year by 2025. Initially this would be driven by donation initiatives. This was expected to eventually be supplemented by improvements in technology supporting organ donation and transplantation. To meet this, a number of priorities were identified around increasing diversity and inclusion, creating a sustainable service model and a pioneering culture of research and innovation.
21. Mr Hume outlined the draft objectives for the UK strategy. The strategy’s aim was reported to be to support increasing the size of the donor pool as well as a revolution in organ utilisation. The ultimate aim would be to make recipient and transplant outcomes the best in the world.
End of meeting
22. During Mr Hume’s presentation the meeting unfortunately had to be abandoned due to the building being evacuated.
Date of next meeting
The next meeting would be held on 9 April 2020.