Scottish Donation and Transplant Group meeting: April 2019
Minutes and papers from the meeting of Scottish Donation and Transplant Group, held on 24 April 2019.
Attendees and apologies
Present
- John Casey, Joint Chair and Clinical Adviser for Transplantation in Scotland
- Iain Macleod, Joint Chair and Clinical Adviser for Organ Donation in Scotland
- Andrew Walls, Donation Committee Regional Chair, Dumfries & Galloway
- Andy Bathgate, Consultant Hepatologist, NHS Lothian
- Anushka Govias-Smith, Commissioning Programme Manager, NHS NSS, NSD
- Charles Wallis, Regional Clinical Lead for Organ Donation
- Claire Williment, Head of Deemed Consent Legislation Implementation, NHSBT
- David Turner, Consultant Clinical Scientist, SNBTS
- David Walbaum, Consultant Nephrologist, NHS Grampian
- Fiona Wishart, Tissue Bank Co-ordinator, SNBTS
- Gill Hollis, Patient Representative
- James Powell, Clinical Director, Edinburgh Transplant Unit
- Jen Lumsdaine, Living Donor Coordinator, NHS Lothian
- Keith Rigg, Non-Executive Director, NHSBT
- Lesley Logan, Regional Manager (Scotland), NHSBT
- Lesley Ross, Patient Representative
- Linda White, Policy Manager, SG
- Lynne Ayton, Head of Operations, Golden Jubilee National Hospital (GJNH)
- Marc Clancy, Consultant Surgeon, NHS Greater Glasgow and Clyde
- Marie Gardiner, Service Manager, NHS Lothian
- Nawwar Al-Attar, Consultant Transplant Surgeon, GJNH
- Peter Croan, Programme Associate Director: Head of Finance & Operations, NHS NSS
- Ruth Joyce, Senior Policy Manager, Human Tissue Authority
- Sam Baker, Donation Team Leader, Scottish Government (SG)
- Sharon Zahra, Clinical Lead, Tissues and Cells, SNBTS
- Stephen Cole, Scottish Intensive Care Society representative
- Stephen Wigmore, President, British Transplantation Society (BTS)
- Stephen Kirkham, Patient Representative
Apologies
- Alastair Innes, Consultant Respiratory Physician
- Ann-Margaret Little, Consultant Clinical Scientist, NHS Greater Glasgow and Clyde
- Anthony Clarkson, Director, ODT
- Anthony Warrens, President, HTA
- Hazel Lofty, Director of Regulatory Development HTA
- Heather Maxwell, Consultant Paediatric Nephrologist
- Jessica Porter, Head of Regulation HTA
- John Forsythe, Associate Medical Director ODT, NHSBT
- Roseanne McDonald, Programme Associate Director: Nursing and Quality Adviser, NHS NSS, NSD
In attendance
- Claire Tosh, Bill Team Leader, SG
Secretariat
- David McIlhinney, Policy Officer, SG
Items and actions
Item 1. Welcome and apologies for absence
1. Mr Casey chaired the meeting and welcomed Professor Stephen Wigmore, President, British Transplantation Society to his first meeting of the group.
2. The Chair noted that Mrs Logan was stepping down from her role as NHSBT Regional Manager and thanked her for her valuable contribution to organ donation over the past decade. It was further noted that she would be joining the Human Tissue (Authorisation) (Scotland) Bill Implementation Team in the Scottish Government on a part-time secondment from NHSBT in early May.
Item 2. Minute of the meeting held on 12 September 2018
3. The previous minute was accepted 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
4. Dr Joyce advised that she did not have any further progress to report in relation to the licensing of retrievals of solid organs for tissue transplantation and that this work remains ongoing.
Item 4. Human Tissue (Authorisation) (Scotland) Bill update and discussion
Item 4.1. Update and discussion
5. Ms Tosh advised that the Bill passed Stage 1 on 26 February 2019, with the Health and Sport Committee supporting its general principles. Stage 2 was underway, with all Government and non-Government amendments to be lodged by 30 April 2019. The Scottish Parliament would then consider the amended Bill at Stage 3 in June 2019 and, if the Bill was passed, it would gain Royal Assent thereafter.
6. It was noted that, as part of the implementation, a series of workstreams and an overarching Programme Board would be established.
Item 4.2. SDTG sub-group
7. Mr Casey advised that at the SDTG sub-group meeting on 25 March 2019 he sought views about the future role of the sub-group given the progress of the Bill, the upcoming focus on implementation and the planned oversight arrangements. Sub-group members had agreed that the work of the sub-group should be subsumed into the main SDTG and the group was therefore no longer required to meet.
Item 5. Organ utilisation in Scotland
8. Mr Casey talked to the utilisation data on organ offers and declines and reasons for decline for the period 1 April 2018 to 31 March 2019. He went on to highlight that the number of organs offered to units was substantial and that the majority of organs declined were not transplanted elsewhere. Reasons for decline included donor age, history and size, etc. He also noted the geography of Scotland presented some challenges in organ utilisation.
9. Mr Casey then invited the group to discuss the data and how we can improve organ utilisation in Scotland and increase transplantation.
Item 5.1. Organ utilisation discussion
10. Mr Clancy agreed that most declined organs were not transplanted elsewhere. He felt there was a need for greater resources and support when transplanting higher risk organs. He suggested that it would be useful to see data on organs which could be accepted. An in-house viability assessement could help to increase utilisation and machine perfusion could also help to increase the use of offered organs.
11. Mr Casey referred to the issue of ischaemia time and the need to reduce ischaemia time for organs. The group considered that more standardisation among units around acceptance criteria would be helpful in increasing utilisations. It was noted that many of units in Scotland have increased activity . One member thought that the number of ICU beds could be a limiting factor.
12. Geography was noted as a particular challenge, with a number of DCD offers declined due to ischaemia time. There was a suggestion that organs not able to be accepted by a unit due to logistical reasons should be able to be transplanted into the patient in another unit (for example by developing an agreement between the Edinburgh and Glasgow kidney transplant units), noting that some units in England have these sorts of arrangements.
13. Mr Casey asked how the group considered the usefulness of the data. The group felt that there could be more granularity in the data, as usually there were a combination of factors in the refusal of an organ. The group identified a need to look at declines and what circumstances would allow surgeons to make a different decision.
14. The group felt that there was a need to refine the data that is collected, which was likely to involve NHSBT (in terms of reporting secondary reasons for decline as well as primary ones) as well as transplant units ensuring that their staff are accurately reporting reasons for decline to the NHSBT Hub. Ms Williment noted that work was ongoing to improve and refine the data. It was felt that data should be focussed on increasing the quality of outcomes, matching the right organs to the right patients at the right time.
Item 5.2. Hepatitis C transplants
15. There was a discussion in relation to transplanting organs from hepatitis c (HCV) positive donors to recipients who did not have HCV, where those recipients consent to accepting such an organ. Such recipients would be offered treatment with HCV direct acting antiviral drugs soon after their transplant; these drugs have a very high effectiveness rate in successfully treating HCV. For abdominal organs, the units were comfortable with accepting such organs where they were otherwise suitable for a patient. The Group agreed that it should be for the recipient to make their own decision, but it was agreed that they needed to receive enough information on HCV to allow them to weigh up the pros and cons of accepting an organ. The patient representatives felt that patients should be offered this option and that it may depend on their health circumstances and how long they might need to wait for another organ as to whether they would agree to accept an HCV positive organ.
16. In relation to cardiothoracic organs, the Golden Jubilee had not agreed to accept HCV organs, but it was noted that the Cardiothoracic Advisory Group (CTAG) would be discussing this matter further as it did not yet have a position on this.
Item 6. DCD Hearts: implementation in Scotland
17. The Chair invited Professor Al-Attar to provide the group with an update on the Golden Jubilee National Hospital‘s plans for implementation of their DCD heart programme.
18. Professor Al-Attar went on to highlight key heart donor and transplant statistics across the UK and Scotland and advised that the number of DBD donors remained relatively static, whereas he felt that DCD donors were on the increase. He also outlined some of the challenges to heart transplantation, including the risks associated with longer ischaemic times. He advised that Scottish patients have the longest waiting times in the UK for a super urgent heart. Contributing factors could include transport and ischaemic time limitations.
19. Professor Al-Attar advised that his unit currently has three sets of consumables available to carry out retrievals using the Organ Care System (OCS), but that further consumables should be available from the funding agreed by NHSBT and NHS England and that a national protocol had been adopted by CTAG for use across the UK, which would ensure a consistent approach to procedures by all cardiothoracic retrieval teams.
Item 7. Organ donation performance and update (Scotland)
20. Mrs Logan provided an update on organ donation performance and trends in Scotland over the last five years and highlighted the significant improvements made around referrals. She highlighted that there were 98 deceased donors in 2018/19 and the referral rates were 99% for potential donors after brainstem death (DBD) and 95% for potential donation after circulatory death (DCD) donors.
21. She went onto advise that the non-proceeding donors had increased to 46 in 2018/19 and explained some of the possible causes for this. During the year there had also been improvements in SNOD involvement and brain stem death testing rates. However further work was required to improve authorisation rates.
22. Discussion ensued around the number and use of ICU beds and whether more investment in ICU departments in Scotland would potentially increase the number of deceased organ donors.
23. For the year ahead, Mrs Logan reported that a key priority was to improve authorisation rates and this would be a key role for the new Specialist Requestors who would begin operating in this role in early 2020. In addition, a Linguistics Professor was providing advice on the use of language when talking to families and further work would be undertaken to record family conversations, as well as a through peer review process for SNODs.
Item 8. Living kidney donation update
24. Ms Lumsdaine reported that during 2018/19 there had been 106 living kidney transplants in Scotland. In March, a UK living kidney donation awareness raising initiative had been launched. As a result of the media coverage, over 100 enquiries from the public were received about living kidney donation in Scotland. A BBC health correspondent followed a kidney sharing scheme transplant, which further promoted the process around living kidney donation.
25. It was noted that there appeared to be some variation of activity in relation to the number of living donor enquiries and referrals between sites across Scotland. Mr Clancy reported on the challenges in Glasgow which he felt were as a result of resourcing issues and difficulties around scheduling transplants for the National Living Kidney Sharing Scheme. Ms Lumsdaine advised that a living kidney donation resource pack for healthcare professionals was available on the Organ Donation Scotland website.
Item 9. A donation and transplantation plan for Scotland: implementation plan
Item 9.1. Position update
26. Ms Baker advised that the majority of recommendations had been completed or were ongoing as business as usual. Two of the recommendations were still being progressed.
Item 10. Post 2020 strategies / plans
Item 10.1. Scottish Government: agreeing key priorities
27. The Chair invited Ms Baker to talk through the paper and expand on the proposed high level priorities for the post 2020 action plan.
28. Ms Baker referred to the discussion paper, which highlighted a number of proposed key areas to be considered for the post 2020 plan. She advised that this new plan would supplement the NHSBT UK Strategy which was currently under development and the new National Services Division (NSD) Transplantation Commissioning Strategy; it would seek not to duplicate them.
29. A number of key priorities for inclusion had already been identified and discussed by the SDTG, which included organ utilisation, implementation of deemed authorisation legislation, aftercare for recipients, novel technologies, increasing tissue donation and living kidney donation.
30. It was agreed that more definitive proposals on the post 2020 recommendations would be presented at the September meeting for discussion.
31. There would also be further engagement with NHSBT over the next six months as they developed the UK strategy. This would potentially include a stakeholder event(s) in Scotland.
Item 11. UK ODT figures and (current) strategy
Item 11.1. UK donation statistics: update
32. Ms Williment provided the group with an update on the end of year statistics and advised that it had been a busy year for deceased donation with 1600 donors and a noticeable reduction in missed referrals. Overall there had been a 98% increase in the number of donors and 68% in transplantation since the beginning of the Strategy period. Although the overall UK consent rate was 67%, it was reported that there were still differences in consent rate by region/nation.
33. BAME donation was still a challenging area, with consent rates decreasing from the previous year.
Item 12. Any other business
Item 12.1. Update: major review of the Scottish National Advanced Heart Failure Service
34. Ms Govias-Smith reported that, following the first meeting of the group, work was ongoing to gather operational data, which would be discussed at the next meeting on 14 May. The group aimed to submit their final report to the National Specialist Services Committee in December 2019, with the proposed publication in 2020.
Item 12.2. Normothermic Regional Perfusion (NRP) for livers
35. Ms Baker reported that Scottish Ministers have agreed to fund the Scottish Government’s share of the UK roll out of NRP for livers from April 2019 onwards. However, confirmation was awaited from the UK Government. NHSBT had confirmed that they would extend the financial support to the Edinburgh unit for the next six months.
Item 13. Written updates
36. The Chair referred to the written updates, which were provided for information.
Date of next meeting
The next meeting was scheduled for 4 September 2019 at 2pm in Atlantic Quay, Glasgow.
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