- 28 May 2019
Attendees and apologies
- Iain Macleod, Joint Chair and Clinical Adviser for Organ Donation in Scotland (Chair)
- John Casey, Joint Chair and Clinical Adviser for Transplantation in Scotland
- Keith Rigg, Non-Executive Director, NHSBT
- John Forsythe, Associate Medical Director, ODT, NHSBT
- Jen Lumsdaine, Living Donor Coordinator, NHS Lothian
- Lesley Logan, Regional Manager (Scotland), NHSBT
- Marie Gardiner, Service Manager, Renal, Transplant & Dermatology, NHS Lothian
- Agnes Barr, Lead Nurse for Tissue Services, Scottish National Blood Transfusion Service (SNBTS)
- Andy Bathgate, Consultant Hepatologist, NHS Lothian
- Stephen Kirkham, Patient Representative
- Gill Hollis, Patient Representative
- Lesley Ross, Patient Representative
- James Powell, Clinical Director, Edinburgh Transplant Unit
- Lynne Ayton, Head of Operations, Golden Jubilee National Hospital (GJNH)
- Andrew Walls, Donation Committee Regional Chair, Dumfries & Galloway
- Hazel Lofty, Human Tissue Authority
- Sharon Zahra, Clinical Lead, Tissues and Cells, SNBTS
- Sam Baker, Organ Donation, Blood Policy and Abortion Services Team Leader, Scottish Government (SG)
- Linda White, Policy Manager, SG
- Ann-Margaret Little, Consultant Clinical Scientist, NHS GG&C
- Roseanne McDonald, Nursing and Quality Adviser, NHS National Services Scotland (NSS)
- Anthony Clarkson, Interim Director - Organ Donation and Transplantation, NHS Blood & Transplant
- Stephen Cole, Scottish Intensive Care Society representative
- Nawwar Al-Attar, Consultant Transplant Surgeon, GJNH
- Charles Wallis, Regional Clinical Lead for Organ Donation
- David Walbaum, Consultant Nephrologist, NHS Grampian
- Heather Maxwell, Consultant Paediatric Nephrologist, NHS GG&C
- Lorna Marson, Consultant Transplant Surgeon, NHS Lothian and President, British Transplantation Society (BTS)
- Gareth Brown, Head of Health Protection, SG
- Alastair Innes, Consultant Respiratory Physician, NHS Lothian
- Claire Tosh, Bill Team Leader, SG
- Sharon Grant, Bill Team, SG
- Fern Morris, Policy Officer, SG
- Colin Faichnie, Specialist Nurse – Organ Donation
- Marion Cairns, Policy Officer, SG
Items and actions
Item 1. Welcome and apologies for absence
1. Dr Macleod chaired the meeting and welcomed Dr Lofty, Human Tissue Authority, to her first meeting of the group. He advised that Ms Marson would step down from this group in her role as BTS President and he recorded his thanks for her valued contribution to the SDTG. He also advised that this would be Mrs Barr’s last meeting before her retiral and also thanked her for her valuable contribution to the group.
Item 2. Minute of the meeting held on 12 September 2018
2. The minute of 12 September 2018 was agreed as an accurate record of the meeting.
Item 3. Matters arising from the previous meeting of the SDTG
Item 3.1. Human Tissue Authority licensing
3. Dr Lofty advised that the area that remains most challenging is around donor selection criteria for islets versus solid organs. The HTA is in the process of establishing whether it would be feasible to establish an aligned donor selection criteria that meets the requirements of both organs and tissues legislation. This was discussed with members of the Islet Steering Committee at the start of October. It was agreed that through that Committee, representatives of the islet clinical community would be best placed to determine the form these criteria should take.
Item 4. Human Tissue (Authorisation) (Scotland) Bill update and discussion
4. Ms Grant advised that the Scottish Parliament Health and Sport Committee had now taken written and oral evidence on the Human Tissue (Authorisation) (Scotland) Bill. During November, members of the Committee spoke to patient groups, professional bodies, NHSBT, SNBTS, the CMO for Wales and law and ethics organisations. They also spoke to people on transplant waiting lists, transplant recipients and families of donors, and took informal evidence from the Scottish Government Bill Team. The Committee also observed a role play with the Specialist Nurses for Organ Donation in order to better understand the process of deceased donor authorisation.
5. Ms Grant went on to outline the emerging issues that arose from the Committee evidence and advised that the Committee will now consider all of the evidence and will produce a Stage 1 report containing their views and recommendations. This report is expected to be published in late January 2019 before the Stage 1 debate, which is expected to take place in February 2019. If the Bill proceeds beyond Stage 1, Stages 2 and 3 may take place in April and May 2019; however these dates are yet to be confirmed.
6. Ms Grant advised that work has commenced on the implementation phase of the Bill with four workstreams currently being set up; commencement of Bill provisions/regulations, guidance and training, public information/stakeholder engagement and evaluation and monitoring.
7. Professor Forsythe provided an update on the English Bill and advised that this would be considered by the House of Lords early in the new year.
Item 5. Organ utilisation in Scotland
8. Dr Macleod invited Mr Casey to speak to this agenda item. Mr Casey advised that there was a need to look at organ utilisation in line with the Taking Organ Transplantation to 2020 Strategy as it is within SDTG’s remit to optimise organ utilisation in Scotland.
9. Mr Casey reminded the group that there had been two meetings to discuss organ utilisation during 2017. The group agreed the following four high level aims:
- Monitor organ decline rates and disseminate good practice – there is already good Scotland-wide dissemination, as well collaboration between the two Scottish renal units with regular joint meetings taking place
- Novel technologies and how this can help to increase the number of transplantable organs
- Staffing and resource
- The long term sustainability of transplant units
- It was suggested that it would be useful to continue to monitor organ transplant activity, organ decline rates and the reasons for decline and to focus on reasons such as logistical issues, ischemia times being too long and novel technologies. Dr Macleod suggested that this could perhaps be monitored twice each year in future. The group thought that it would be beneficial to further understand the utilisation data presented in order to drive change and improvement. It was agreed that this would not be used as a way of monitoring success at unit level,but rather the data would help SDTG to decide what areas it needs to focus its efforts on. It was also suggested that SDTG should review the data alongside comparative data from spring/summer 2017 before the organ utilisation workshops had taken place to see if there had been any change in utilisation.
11. Professor Forsythe suggested considering further collaboration between the Edinburgh and Glasgow Units (in relation to kidney transplants) by potentially moving patients and organs across units to manage decline rates.
12. Professor Forsythe advised that NHSBT had received patient views that there should be a duty of candour requirement to inform patients if they did not receive an organ offered for them due to capacity issues. Members of the group commented that the law on Duty of Candour in Scotland is different and raised concerns about whether all patients would find this information useful.
Item 6. Organ donation performance and update (Scotland)
13. Mrs Logan provided an update on organ donation performance in Scotland and highlighted that in the 2018 calendar year, the referral rates for DBD were 99% and 96% for DCD referral.
14. Specialist Nurses for Organ Donation (SNOD) involvement in approaches to families was 86% in DBD cases and 84% in DCD cases. In some cases, because the public awareness of organ donation is so high, families were raising the subject of organ donation earlier.
15. Current authorisation rates were 71% for potential DBD donors and 56.4% for potential DCD donors. Mrs Logan advised that authorisation rates was one of the key areas of focus and improvements for 2019.
16. Mrs Logan commented that there had been a dip in the number of deceased donors during the middle of the year and explained that this could have been due to a reduction in numbers of eligible donors or an increase of non-proceeding donors. She went on to advise that there had been 105 organ donors in Scotland during the 2018 calendar year, as at 12 December 2018.
Item 7. A Donation and Transplantation Plan for Scotland
Item 7.1 Position update
17. Ms Baker referred to the position paper which provided a status update on the Donation and Transplantation Plan for Scotland and the impact and effectiveness of each recommendation. She advised that the majority of recommendations had been completed or were ongoing as business as usual. Two of the recommendations are still being progressed – the whole hospital approach which NHS Grampian is beginning to pilot and work to encourage the Island Boards‘ involvement with NHS Highland and NHS Grampian Organ Donation Committees.
18. Ms Baker invited comments on the paper from the group and asked if there were any particular areas which should be progressed in any new plan to be developed for the post 2020 period or whether any existing actions should be taken forward further. She advised that a fuller discussion would ensue on this at next meeting of the SDTG in April 2019.
19. Members commented that the update on the existing plan was very positive and that this provided a good reflection of the progress that had been made.
20. Suggested areas for a new plan included organ utilisation and funding for/use of novel technologies. Ms Baker advised that the final business case on normothermic regional perfusion (NRP) for livers is awaited from NHSBT.
21. It was also suggested that aftercare and rehabiltion for patients post transplant should be reviewed. Ms McDonald confirmed that National Services Division (NSD) was looking at the pathway for post-transplant care for patients.
22. Ms Baker reminded the group that any new plan developed would complement the UK Strategy (to be developed by NHSBT with stakeholders) and NSD commissioning strategy and not duplicate them.
Item 7.2 Living kidney donation update
23. Ms Lumsden updated the group on progress with the Living Kidney Project. She advised that in the 2018 calendar year, to date, there had been 100 living donor transplants in Scotland. She went on to outline the ongoing work to provide recipient access, support and awareness, which included a national data exercise to ensure that all patients approaching end stage renal failure have a documented decision on whether a transplant is appropriate for them, a home education pilot in the Lothians and Borders and the development of a living donation resource pack for healthcare professionals in Scotland. She advised that the regular meetings with the link nephrologists had been very productive.
24. Dr Macleod congratulated Ms Lumsdane on the excellent progress that had been made on living donation.
Item 8. UK ODT figures and strategy
Item 8.1 UK donation statistics update
25. Professor Forsythe presented this item on behalf of Mr Clarkson. He advised that transplant numbers were currently at 67 transplants per million population (pmp), with numbers of deceased donors remaining on track to meet the 26 donors pmp target by 2020. Missed opportunities continued to decrease. There were 300 pairs in the October 2018 kidney sharing scheme matching run, with 85 transplants identified as a result (the highest numbers ever in one matching run).
Item 8.2 Implementation of UK Strategy update
26. Professor Forsythe advised that the UK Strategy post 2020 was at the very early stages of development and that this would start as a formal project in the new year, once the new NHSBT Chief Executive takes up post.
Item 9. Any other business
Item 9.1 EU Exit: amended organ and human tissue regulations
27. Ms Baker advised that the Department of Health and Social Care had laid the following amended regulations on 19 November 2018, following agreement from the Scottish Parliament for the UK Government to legislate on the Scottish Government’s behalf:
- The Human Tissue (quality and Safety for Human Application) (Amendment) (EU Exit) Regulations
- The Quality and Safety of Organs Intended for Transplantation (Amendment) (EU Exit) Regulations
28. Mr Kirkham sought assurances that supplies of the specific immunosuppressants required for transplant recipients (Tacrolimus) would not be disrupted by EU Exit. Ms Baker noted that the UK Department for Health and Social Care was responsible for working with pharmaceutical companies to stockpile key drugs to mitigate the risks of a no-deal Brexit. She agreed to look into this and feed back to Mr Kirkham and Dr Ross on this issue.
29. Dr Lofty went on to advise that the supporting HTA guidance for establishments importing organs or tissue/cells will be developed in the new year and that a transition period has been included in the draft Human Tissue regulations.
Item 9.2 Major review of the Scottish National Advanced Heart Failure Service
31. Ms McDonald informed the group that the NSD Commissioning Framework has a cycle of service reviews every three to five years and the Scottish National Advanced Heart Failure Service is due to be reviewed in 2019. A review panel for the Scottish National Advanced Heart Failure Service was currently being established and would meet in January 2019. There would be three meetings in total and they would report their findings in November/December 2019. The panel would review data and pathways and would also benchmark against England and internationally.
Item 10. Written updates
32. The Chair referred to the written updates which were provided for information.
Date of next meeting
The next meeting is scheduled for 24 April 2019 at 2pm in St Andrew’s House, Edinburgh.
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