- 28 May 2019
Attendees and apologies
- 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
- David Walbaum, Consultant Nephrologist, NHS Grampian
- Lesley Logan, Regional Manager (Scotland), NHSBT
- Anthony Clarkson, Acting Director, ODT, NHSBT
- Marie Gardiner, Service Manager, Renal, Transplant and 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
- David Turner, Consultant Clinical Scientist, SNBTS
- Marc Clancy, Consultant Transplant Surgeon, NHS Greater Glasgow and Clyde (GG&C)
- James Powell, Clinical Director, Edinburgh Transplant Unit
- Lesley Ross, Patient Representative
- Roseanne McDonald, Nursing and Quality Adviser, NHS National Services Scotland (NSS)
- Jess Porter, Head of Regulation, Human Tissue Authority
- Sharon Zahra, Clinical Lead, Tissues and Cells, SNBTS
- Lorna Marson, Consultant Transplant Surgeon, NHS Lothian
- Sam Baker, Organ Donation, Blood Policy and Abortion Services Team Leader, Scottish Government (SG)
- Linda White, Policy Manager, SG
- Iain Macleod, Joint Chair and Clinical Adviser for Organ Donation in Scotland
- Lynne Ayton, Head of Operations, Golden Jubilee National Hospital (GJNH)
- Gareth Brown, Head of Health Protection, SG
- Nawwar Al-Attar, Consultant Transplant Surgeon, GJNH
- Andrew Walls, Donation Committee Regional Chair, Dumfries & Galloway
- Anthony Warrens, Professional Member, Human Tissue Authority
- Stephen Cole, Scottish Intensive Care Society representative
- Alastair Innes, Consultant Respiratory Physician, NHS Lothian
- Charles Wallis, Regional Clinical Lead for Organ Donation
- Heather Maxwell, Consultant Paediatric Nephrologist, NHS GG&C
- Neal Padmanabhan, Consultant Nephrologist, NHS GG&C
- Peter Croan, Programme Director, National Services Division, NHS NSS
- Claire Tosh, Team Leader, SG
- Fern Morris, Policy Officer, SG
- Victoria Lopez, Senior Marketing Manager, SG
- Marion Cairns, Policy Officer, SG
Items and actions
Item 1. Welcome and apologies for absence
1. Mr Casey chaired the meeting and welcomed attendees. Ms Porter was attending the meeting via Skype. The Chair recorded his congratulations to Ms Johnson on her promotion and her well-deserved OBE and welcomed Mr Clarkson, NHSBT, to his first meeting of the group and also Ms Lopez, Scottish Government Marketing Manager.
Item 2. Minute of the 65th meeting held on 22 March 2018
2. The minute of 22 March 2018 was agreed as an accurate record of the meeting, with the exception of Item 3.1 - Histopathology. Mr Powell advised that the lack of out of hours pathology cover related to donor pathology and not pathology for organ recipients.
Item 3. Matters arising from the previous meeting of the SDTG
Item 3.1. Histopathology
3. Professor Forsythe advised that the number of incidents reported on the donor pathology side across the whole of the UK had reduced. He went on to highlight that there was still an external issue to be resolved and NHSBT had approached the Royal College of Pathologists, but there had been no further action to date.
4. Professor Forsythe also made the group aware that guidelines are being developed for forensic pathologists carrying out a post-mortem where organ donation has taken place and Scottish forensic pathologists are feeding into this work.
5. Mr Powell reiterated that the out of hours pathology issue facing NHS Lothian is a UK-wide issue.
Item 3.2 GP registrations
6. Ms Baker confirmed that the backlog of GP registrations had now been uploaded onto the Organ Donor Register (ODR) and this had led to a significant increase in the numbers registered on the ODR in Scotland. Ms Baker thanked NHSBT and NSS for their work on this.
Item 3.3 Human tissue authority licensing
7. Ms Porter provided an update on the licensing of retrievals of solid organs where they may be used as tissue. She advised that good progress had been made following the meeting in April between the HTA, NHSBT and SNBTS to establish a way forward. She reported that the most challenging area is the donor selection criteria for islet cell donors.
8. Professor Forsythe commented that he would be keen to follow the Scottish model for islets and advised that a meeting will be arranged with islet laboratories, technicians and clinicians to progress further. SNBTS will be invited to attend this.
Item 4. Human Tissue (Authorisation) (Scotland) Bill update and discussion
9. Ms Tosh and Ms Morris provided an update on progress with the Bill. They outlined the approach and engagement undertaken in developing the Human Tissue (Authorisation) (Scotland) Bill and also provided a summary of the provisions contained in the Bill.
10. They went on to outline the approach and engagement which had been undertaken with regards to the provisions on pre-death procedures in the Bill and the next steps in developing the associated regulations and the ongoing discussions which would inform them.
11. The call for written views on the Bill closed on 4 September and 34 responses had been received by the Health and Sport Committee. The Finance Committee’s call for views closed on 31 August. In terms of next steps, the Health and Sport Committees will hold its oral evidence sessions during November 2018 and they are expected to prepare their Stage 1 report in January 2019.
12. Ms Tosh advised that the Bill team are now working on plans for implementation.
13. Professor Forsythe provided an update on the English Bill, which is still to be considered by the House of Lords. He advised that there may need to be a HTA Code of Practice that sits behind the legislation. He also commented that there will be a change to the Organ Donor Register which will include a change for England to include a faith declaration. It was confirmed that the Scottish Government does not intend to include a faith declaration on the Scottish registration page as the Scottish Bill already includes provisions in the duty to inquire which would consider if a person’s faith needed to be considered.
Item 5. Organ utilisation in Scotland
14. Mr Casey invited Mr Powell and Mr Clancy to comment on the organ utilisation information that was circulated with the papers. Mr Clancy advised that it had been a quiet time for Glasgow on transplants, which was reflected in the figures. Mr Powell commented that he was unsure how the decline reasons were being recorded as he was not aware of any declines due to no beds, no staff or no theatre being available in NHS Lothian.
15. Ms McDonald queried whether the same organ can be declined twice by the same unit. NHSBT confirmed that it can be reoffered for a different patient so it could be declined twice, but not always for the same reason.
16. Mr Casey commented that the data reflects the significant workload in considering all these offers, many of which would not be at all suitable for the relevant patient.
17. Professor Forsythe suggested feeding back to NHSBT on how the data is recorded so that the quality can be improved.
18. Mr Casey advised that the new UK liver allocation scheme had been introduced, although it was too soon to report any hard statistics. Professor Forsythe commented that the early results from the scheme were positive and show an increase in transplants and reduction in deaths on the waiting list. Mr Powell informed the group that a new monitoring system has been developed to look at the effects of the scheme.
19. Ms Logan also advised the group that the Golden Jubiliee National Hospital was meeting their 20 minute target retrieval time for hearts.
Item 6. Organ and tissue donation and transplant strategies post 2020
20. The group discussed the plans for the UK Organ Donation and Transplant Strategies post 2020. Mr Clarkson advised that NHSBT intends to have an initial discussion on their plan at their Board meeting in November and have a one year development phase for the plan from January 2019, with the intention to publish it in April/May 2020.
21. Ms McDonald advised that National Services Division will start work early next year on their new plan for commissioning organ transplantation. NSD plan to align their future strategy with the NHSBT strategy to compliment it and avoid any overlaps. Timings of the donation process and novel technologies will be considered for inclusion.
22. Ms Marson provided an update on the work of the British Transplantation Society to help improve sustainability of transplant services. At the meeting in London in June 2018, various issues were considered and the following three main areas were agreed for future consideration:
- length of the donation pathway is clearly a key issue for transplant services – NHSBT are working on this
- optimising transplant unit collaboration
- responding to the challenge of recruitment, retention and burnout among transplant unit staff
23. Mr Casey suggested establishing a short-life working group to look at developing an action plan for Scotland to improve and sustainably increase organ and tissue donation and transplantation in Scotland. This plan will build on the goals in NHS Blood and Transplant’s (NHSBT’s) proposed strategy post-2020. Key stakeholders will be invited to join the group.
Item 7. Organ donation performance and update (Scotland)
24. Ms Logan provided an update on organ donation performance and advised that in 2018-2019 potential DBD donors were up by 11 and DCD donors down by 13. The referral rates are the best ever in Scotland with 100% for DBD referral and 95% for DCD referral. Of the five missed referrals, Ms Logan advised that it was unlikey that any of them could have donated. Specialist nurse for organ donation (SNOD) involvement in approaches to families was 83% in DBD cases and 85% in DCD cases. In some cases, families are raising the subject of organ donation earlier.
25. Current authorisation rates were at 71% for potential DBD donors and at 58% for potential DCD donors. Most refusals were due to a known wish or, in a few cases, public awareness due to relatives saying the person knew about the Organ Donor Register, but was not on it. There had been two overrides since April. Sixty non-proceeding donors were predicted this calendar year, most of which did not proceed due to a prolonged time to asystole.
26. There continued to be an excellent response from the Crown Office and Procurator Fiscal Service in supporting donation. There were seven referrals to the Procurator Fiscal in one month; in every case they allowed donation to proceed.
27. Ms Logan also advised that NHSBT was producing short films about organ donation to show families; this should help ensure consistent messaging and might help improve authorisation rates. She also noted that the annual St John’s memorial service at the Royal Botanical Gardens, Edinburgh, on 7 September went very well and that the Specialist Requester recruitment is ongoing.
Item 8. Donation and transplantation plan for Scotland: implementation
Item 8.1 Living kidney donation project
28. Ms Lumsdaine reported an increase in the living donor transplant numbers to 94 in 2017-2018 which was very encouraging.
29. She advised that the Scottish Renal Association is working to ensure that every patient approaching end-stage renal failure has a discussion about transplantation. She also reported that a home education nurse is being recruited to lead a pilot in NHS Lothian.
30. A new Money Matters leaflet has been produced to help avoid people being put off donating due to financial barriers.
31. Every GP surgery in Scotland now has a poster and leaflets promoting living donation.
32. It will soon be the 10th anniversary of the first altruistic donation in Scotland.
Item 8.2 Media and marketing campaign/Organ Donation Week reflection
33. Ms Lopez provided an update on this year‘s We Need Everybody campaign, which ran during Organ Donation Week 2018. This included partnership working and social media activity. There were over 8,000 unique website visitors to Organdonationscotland.org during the week and 3,200 who had completed the online registration form. There had also been a high number of people who shared their registration decision via social media.
Item 8.3 General update
34. Ms White advised that a number of case studies during Organ Donation Week received a lot of media coverage. There were a lot of local activities arranged by the SNODs during the week.
35. Ms Logan commented that that letter from the Minister for Public Health, Sport and Wellbeing helped to get a lot of buildings lit up in green across Scotland to mark Organ Donation Week.
Item 8.4. Whole hospital approach
36. NHS Grampian had volunteered to pilot the whole hospital approach and are in the process of pulling together a short proposal on their approach. They plan to focus on increasing cornea donation as part of this work.
Item 8.5. Donation volunteer network
37. Ms Logan advised the group that 20 medical students had signed up to join a volunteer project to promote awareness of organ donation. NHSBT is working with NHS Greater Glasgow and Clyde on this project.
Item 9. UK ODT figures and strategy
38. Mr Clarkson advised that that NHSBT is on track for another increase in deceased donors this year. There had been 648 deceased donors so far in 2018/19 and a 45% decrease in missed referrals since the Strategy began.
39. There had been a 7% increase in donor numbers compared to last year and so NHSBT hoped that the target of 26 donors per million population could be met by 2020.
40. The transplant numbers were currently at 62 transplants per million population so it was likely to be challenging to meet the target of 72 transplants per million population by 2020. There had been 159 missed opportunities across the UK during the year to date; Mr Clarkson noted that this was not an ideal, but was a reduction in previous numbers of missed opportunities.
41. Mr Clarkson advised that NHSBT’s key priorities at the moment are focused on behaviour change, supporting legislation change, the ambassador programme and the specialist requester roll out.
42. Professor Forsythe also advised that the other ongoing projects that are running alongside these priorities include: the length of the donation pathway, the consent and explanation of risk for recipients project and the Advisory Committee on the Safety of Blood, Tissue and Organs (SaBTO) microbiological safety guidance and the aide memoire to help clinicians to understand the document. Good progress had also been made with proposals for donors with hepatitis c (HCV) for those who were content to accept an HCV positive organ.
Item 10. Any other business
Item 10.1. NRP livers
43. Ms Baker advised that NHSBT had put forward a business case to roll out Normothermic Regional Perfusion (NRP) for liver donation across the UK. NRP, which is already used in Edinburgh and Cambridge, is being considered by the four nations and commissioners, although NHSBT is doing further work on the health economics cases for the roll out. The group agreed that there is a good case for supporting NRP as it can increase transplant rates and offers better outcomes for patients.
Item 10.2. Sunscreen for transplant patients
44. Ms Baker referred confirmed that sunscreens can be prescribed in Scotland for patients on medications that significantly increase the risk of skin cancer, such as immunosuppressants for solid organ transplant recipients.
45. Transplant patients prescribed sunscreen would be classified as ‘pay and report’. This puts additional responsibilities on the prescriber, but does not prevent prescribing where this is justified. Mr Casey confirmed that this was justified so sunscreen should be prescribed for patients who have had a transplant.
Item 11. Date of next meeting
46. The next meeting will be held on Wednesday 12 December 2018 at 2pm in St Andrew’s House, Edinburgh.