- 5 Oct 2018
Attendees and apologies
- Dr Iain Macleod Joint Chair and Clinical Adviser for Organ Donation in Scotland, NHS Grampian
- Mr John Casey Joint Chair and Clinical Adviser for Transplantation in Scotland, NHS Lothian
- Ms Sam Baker Head of Organ Donation and Blood Policy, Scottish Government
- Ms Pam Niven Programme Manager - Organ Donation and Transplantation, Scottish Government
- Mrs Lesley Logan Regional Manager (Scotland), NHSBT
- Professor Nawwar Al-Attar Consultant Transplant Surgeon, GJNH
- Mr Andrew Walls Donation Committee Regional Chair, NHS Dumfries & Galloway
- Ms Marie Gardiner Service Manager, Renal, Transplant and Dermatology, NHS Lothian
- Ms Agnes Barr Lead Nurse for Tissue Services, SNBTS
- Dr Andy Bathgate Consultant Hepatologist, NHS Lothian
- Mr James Powell Clinical Director, Edinburgh Transplant Unit
- Dr Stephen Cole Scottish Intensive Care Society representative
- Dr Alastair Innes Consultant Respiratory Physician, NHS Lothian
- Ms Jen Lumsdaine Living Donor Co-Ordinator, NHS Lothian
- Dr Sharon Zahra Clinical Lead, Tissues and Cells, SNBTS
- Mr Stephen Kirkham Patient Representative
- Ms Sally Johnson Director, ODT, NHSBT
- Dr Charles Wallis Regional Clinical Lead for Organ Donation
- Dr Lesley Ross Patient Representative
- Dr David Walbaum Consultant Nephrologist, NHS Grampian
- Mr Gareth Brown Head of Health Protection, Scottish Government
- Ms Lynne Ayton Head of Operations - GJNH
- Professor John Forsythe Associate Medical Director, ODT, NHSBT
- Mr Keith Rigg Non-Executive Director, NHSBT
- Ms Gill Hollis Patient Representative
- Miss Lorna Marson Consultant Transplant Surgeon, NHS Lothian
- Dr David Turner Consultant Clinical Scientist, SNBTS
- Mr Marc Clancy Consultant Transplant Surgeon, NHS GG&C
- Ms Roseanne McDonald Nursing and Quality Adviser, NSS
- Mr Anthony Warrens Professional Member, Human Tissue Authority
- Dr Ann-Margaret Little Consultant Clinical Scientist, NHS GG&C
- Dr Heather Maxwell Consultant Paediatric Nephrologist, NHS GG&C
- Dr Neal Padmanabhan Consultant Nephrologist, NHS GG&C
- Ms Claire Tosh Team Leader, Scottish Government
- Ms Sharon Grant Policy Officer, Scottish Government
- Mr Steven Manson Policy Officer, Scottish Government
- Ms Linda White Scottish Government
- Ms Anushka Govias-Smith National Services Division, NSS
- Ms Marion Cairns Policy Officer, Scottish Government
Items and actions
Item 1. Welcome and apologies for absence
1. Mr Casey chaired the meeting and welcomed attendees. Ms Anushka GoviasSmith was attending for Ms Roseanne McDonald. Ms Linda White and Mr Steven Manson, both from Scottish Government, were also in attendance.
Item 2. Minute of the 64th meeting held on 20 December 2017
2. The minute of 20 December 2017 was agreed as a true record of the meeting.
Item 3. Matters arising from the previous meeting of the SDTG
Item 3.1. Histopathology
3. Ms Johnson advised that the pathology review, being undertaken by Professor Dark, was still ongoing and that Professor Forsythe was following this up with the Royal College of Pathologists. Mr Powell advised that there was still a lack of out of hours donor pathology cover in Lothian.
Item 3.2 GP Registrations
4. Ms Baker confirmed that NSS was transferring the outstanding GP registration data to NHSBT for processing. Ms Johnson advised that, due to the volume of data, it was expected that the process would take some months to complete. Ms Baker advised that the organ/tissue donation registration form provided at GP surgeries has been updated to make the organ and tissue donation options clearer.
Item 4. Organ utilisation in Scotland
5. Mr Casey updated the group on his recent telecon with colleagues from the Golden Jubilee, Scottish Government, NHS Grampian and NHSBT to discuss improving heart utilisation. Discussion took place around streamlining the heart retrieval process, completion of paperwork, the use of blue light transport and exceeding speed limits and ex-vivo perfusion of hearts.
6. Mrs Logan advised that key performance indicators for heart retrieval (time from start of operation to the heart being ready to leave the hospital) are being met by the Golden Jubilee retrieval team. However, Professor Al-Attar noted that there was still often time lost where a heart had to travel longer distances by road or where a flight was diverted from Glasgow airport to Prestwick due to bad weather. He felt that in some cases enabling the transport vehicle to exceed the speed limit would make a difference in enabling a heart to be viable for transplant. Ms Baker advised that the UK Department of Transport was considering bringing forward regulations under the Road Safety Act 2006 to enable vehicles transporting human organs to exceed speed limits where the driver had met certain training standards. However, this was likely to take some time to come into force. Ms Baker advised that the Scottish Ambulance Service had offered to discuss with the Golden Jubilee whether they could offer assistance. Ms Logan suggested that it would be beneficial to identify those hospitals where hearts would take longer to travel from, where a vehicle which could exceed speed limits should be requested.
7. Mr Casey highlighted the many reasons why organs were declined for transplant. The list of reasons for decline is being reviewed nationally to provide clearer and more transparent reasons. He was keen to be able to consider further the extent of any declines relating to theatre availability or cold ischaemia times. Ms Johnson noted that the British Transplantation Society would be hosting a transplant sustainability summit in June, which should be helpful in considering any transplant capacity issues. Professor Al-Attar advised that the Scout programme had been commissioned by NHSBT and this should allow an increase in the number of hearts which can be utilised.
Item 5. Preparations for organ and tissue donation bill
8. Ms Tosh provided an update and advised that the Bill would be introduced to Parliament before the end of the parliamentary year with a view to it potentially being considered by the Health and Sport Committee in the autumn. The SDTG sub group met in February and discussion took place regarding safeguards and pre-death procedures, along with awareness raising. She also noted that officials were considering including provisions to provide a statutory basis for the NHS Organ Donor Register for Scottish residents. This was not expected to change the information stored in the ODR in practice, but should provide helpful assurances in light of the forthcoming General Data Protection Regulation. It is expected that implementation of the Bill, if passed, would take at least a year to allow for awareness raising. Ms Tosh advised that the UK Members Bill passed its second reading on 23 February.
Item 6. Pregnancy testing
9. NHSBT procedures require pregnancy testing via a blood test on all female authorised donors of childbearing age; the protocol also indicates that testing without consent of family members is not appropriate. Whilst the Scottish Intensive Care Society guidance is that all women of childbearing age should be pregnancy tested on admission to an ICU, a NHSBT survey indicated that this did not happen in all cases. Dr Cole advised that testing was carried out in many Intensive Care Units (ICU) on admission, but this would normally be a urine test and so is not a sufficiently reliable test for donation purposes.
10. It was agreed that testing was needed for all female patients of child bearing age where donation had been authorised, similar to the procedure for female patients prior to having surgery (unless there were specific reasons why relatives could guarantee the patient could not be pregnant). It was agreed that if the pregnancy status of the potential donor was uknown and the family refused permission to carry out a pregnancy test, then donation could not currently take place. Discussion took place as to whether the law or standard operating procedures should be amended to enable pregnancy testing. Ms Baker noted that the provisions in the Organ and Tissue Donation Bill for pre-death procedures should help resolve this issue by clarifying that necessary tests, including pregnancy tests, could be carried out in any case where donation had been authorised.
Item 7. Organ donation statistics and update (Scotland)
11. Ms Logan presented on progress to date on deceased donation. To date, there has been 99 donors (60 DBD and 39 DCD donors), with non proceeding donors averaging 3 per month. While there was a decrease in the number of potential DBD donors, the number of potential DCD donors had increased. Overall, there had been a dip in donor numbers during July, August and September 2017, but an improvement since then. SNOD involvement had improved and there were also very few missed referrals – 1 DBD and 28 DCD since April 2017, but most of them would have been unlikely to be able to donate anyway. There has been 8 family overrides.
12. Current authorisation rates were at 76% for DBD donors and 44% for DCD donors; the Scottish team’s goal for 2018/19 would be to increase the DCD authorisation rate to 55%. Ms Logan also noted that the team was planning to produce a film about donation to show families; this should help ensure consistent messaging and might help improve authorisation rates. She also noted that consideration was being given to introducing specialist requesters in Scotland whose main role would be to approach families about donation.
13. New organ donation lift wraps for hospitals in Edinburgh, Glasgow and Aberdeen should be installed soon to help raise awareness of donation. New infographic notices are being displayed in hospital ICU staff areas to show organ donation activity and will be updated regularly. Updated donation booklets are being introduced into ICU waiting areas.
Item 8. Donation and transplantation plan for Scotland - implementation
Item 8.1 Media and marketing campaign
14. Ms Niven advised that the media campaign for this year will continue with the We Need Everybody creative. It is anticipated that the campaign will launch in the summer.
Item 8.2 Living kidney donation
15. Ms Lumsdaine was pleased to share that there had been an increase in the number of completed health check questionnaires returned from potential donors. She was also pleased to announce that the number of living donor transplants has increased to 95 in 2017, the highest recorded number in Scotland. It was also noted that nearly 2,000 of the living donor information packs had been given out and that there was expected to be a further PR campaign to promote living donation in May. Ms Niven advised that funding had been agreed which will enable Ms Lumsdaine to remain in post for a further 2 years. Ms Niven thanked Ms Lumsdaine for her continuing efforts in raising awareness and increasing living donation within Scotland.
Item 8.3 Neonatal / paediatric donation
16. Following the guidance issued for paediatric and neonatal critical care staff, an event was held on 7 March and was attended by clinicians, nurses, midwives and families affected to discuss the donation process and the issues faced. Mr Casey advised that it was an excellent event with lots of progress being made.
Item 8.4 General update
17. Ms Niven provided a general update and advised that funding for a further two years has been agreed with Kidney Research UK for the Peer Educator Programme which promotes donation amongst South Asian communities. The Peer Educators will now also be promoting living, as well as deceased, donation. A meeting was held with the Scottish Ahlul Bayt Society to look at ways to promote and raise awareness of organ and tissue donation among the Shia Muslim community and other faith communities. A further meeting is being arranged.
18. There are plans to update the list of donor names held within the Organ and Tissue Donation Memorial at the Royal Botanic Garden, Edinburgh.
Item 9. UK ODT figures and strategy
Item 9.1 UK donation statistics update
19. Ms Johnson advised that this had been the best year ever in the UK for deceased organ donation and tranplantation. Since 2007/8, there has been a 92% increase in donors with a 67% increase in transplants. The consent rate in the UK has also increased in relation to DBD, DCD and black and minority ethnic community donation. In addition, missed opportunities had been reduced by 25% in the past year.
Item 9.2 Implementation of UK strategy update
20. Opt in registrations on the Organ Donor Register had increased by 1.1million over the past year; however, within the last 2 months the numbers opting out had also increased. The opt out consultation in England has had extraordinary interest with over 17,000 responses being received. The UK Members Bill could be given Royal Assent in around a year. The UK Bill only covers England and does not include any provision for pre-death procedures.
21. Ms Johnson advised that work to change the IT system is on time and within budget. The Liver allocation scheme had just launched on a very busy day. Planning for 2020 and beyond is to be considered, with initial work on the post 2020 organ donation strategy beginning. It is likely that the living and deceased donation strategies will in future be combined into one strategy.
Item 10. Any other business
Item 10.1 HTA licensing for organ/tissue
22. Ms Baker advised that the HTA would be meeting NHSBT (with SNBTS also being represented) on 24 April to discuss the HTA’s view that NORS retrieval teams also require a tissue licence (in addition to an organ one) where solid organs are being retrieved for the purpose of a tissue or cell transplant. The HTA had advised that they feel this is a requirement under the Human Tissue (Quality and Safety for Human Application) Regulations 2007 and await a proposal from NHSBT. Ms Johnson indicated that she expected that they would find a solution to resolve this issue.
Item 10.2 DCD heart donation
23. Professor Al-Attar advised that several DBD retrievals of hearts using the Organ Care System (OCS) machine had been undertaken by the Golden Jubilee team. They had now met the requirements to begin DCD heart retrievals under supervision. Professor Al-Attar hopes to be ready by June to seek approval to proceed with DCD heart retrievals. The Golden Jubilee had purchased three more sets of OCS consumables and agreed that the siginificant cost of the consumables was the biggest hindrance to progressing. Ms Logan advised that good feedback had been received regarding the OCS process; the Scouts had been helpful in educating staff on this.
Item 10.3 Early retirement
24. The Chair announced to the group that Ms Niven was taking early retirement and this would be her last meeting of the SDTG. The group presented Ms Niven with leaving gifts and wished her all the very best for the future. Finally, the Chair thanked everyone for attending and advised the date of the next meeting.
Date of next meeting: Wednesday 12 September 2018 at 2pm in St Andrew’s House, Edinburgh