NHS BLOOD AND TRANSPLANT

NHS BLOOD AND TRANSPLANT MINUTES OF THE FOURTEENTH MEETING OF THE ADVISORY GROUP CHAIRS COMMITTEE HELD AT 10 AM ON TUESDAY, 1 ST JULY 2014 AT BIRKBECK COLLEGE, UNIVERSITY OF LONDON PRESENT: Prof James Neuberger, Associate Medical Director ODT, NHSBT (Chair) Prof Anthony Warrens, BTS Representative Dr Nick Banner, Cardiothoracic Advisory Group Deputy Chair Prof John Dark, National Clinical Lead for Governance, ODT Ms Sally Johnson, Director of ODT, NHSBT Mr James McNeill, Business Transformation Services, NHSBT Prof Darius Mirza, Bowel Advisory Group Chair Prof John O Grady, Liver Advisory Group Chair Dr Paul Murphy, National Organ Donation Committee Chair Prof Rutger Ploeg, National Retrieval Group Chair Mr Mike Potter, Director of Business Transformation Services, NHSBT Mr Aaron Powell, Asst Director, Transplantation Support Services, ODT, NHSBT Mr Derek Tole, Ocular Tissue Advisory Group Chair Mr Steven Tsui, Cardiothoracic Advisory Group Chair Prof Chris Watson, Kidney Advisory Group Chair Mrs Claire Williment, Head of Transplant Development, ODT, NHSBT IN ATTENDANCE: Ms Lisa Burnapp, Lead Nurse Living Donation, ODT, NHSBT (part meeting) Mr Anthony Clarkson, Assistant Director Organ Donation and Nursing (part meeting) Ms Susan Hannah, SNOD Team Manager (Scotland), NHSBT (part meeting) Mr Jeremy Monroe, Transplant Policy Review Committee Chair Ms Ella Poppitt, ODT Regional Manager (part meeting) Mrs Kathy Zalewska, Clinical & Support Services, ODT (Secretary) 1 WELCOME & APOLOGIES J Neuberger welcomed everyone to the meeting and apologies were reported from: Mr Roberto Cacciola, Assoc. National Clinical Lead for Organ Retrieval Mr Steve Clark, Cardiothoracic Advisory Group Deputy Chair Prof Peter Friend, Pancreas Advisory Group Chair Mrs Rachel Johnson, Head of Transplantation Studies, ODT, NHSBT Prof Derek Manas, Liver Advisory Group Deputy Chair Ms Lorna Marson, Kidney Advisory Group Deputy Chair Ms Helen Tincknell, Lead Nurse Recipient Co-ordination, ODT Dr Lorna Williamson, Medical & Research Director, NHSBT 1.1 Declarations of Interest AGChC(14)14 There were no declarations of interest. 1

2 MINUTES OF THE MEETING HELD ON 11 TH MARCH 2014 AGChC(M)(14)1 2.1 The minutes of the previous meeting were agreed as a correct record subject to the following amendments: Minute 4.8 - Add to the last paragraph: Chairs requested that before withdrawal of the contract, work should take place enabling NHSBT to accept electronic data downloads from all centres. 3 POINTS & MATTERS ARISING AGChC(AP)(14)2 3.1 Action points: Item 1: Draft ToR of Patient Support Group Meetings: Refer to minute 6. Item 2: Transition Change of Care Guidelines: Guidelines circulated and included on ODT website. Item 3: Novel Technologies in Organ Transplantation: Work has taken place to prevent duplication of effort with other groups. Item 4: Responses by Advisory Group Chairs: Monthly telecons have now been set up for all Chairs. Item 5: ToR for SOAGs Chair s reports: Ongoing Item 6: Peer review: Ongoing with good progress being made. Item 7: AOB Correspondence re characterising Rhesus donor recipient status has been circulated. Matters Arising: Minute 6.1: Relations with ROI: J O Grady queried progress on developing a Memorandum of Understanding on sharing arrangements. J Neuberger advised that, despite several requests, a written response was still awaited from ROI but NHSBT would continue to seek a documented agreement to support current practices. 4 NHSBT ISSUES 4.1 Update on TOT2020 Strategy A Powell reported on the five key strategic initiatives in the TOT2020 Strategy: Behavioural Change Strategy the high level strategy has been approved by the Board. Detailed actions for year 1 and 2 are being developed into a business case to be considered later this month. This will focus upon agreeing new approaches that are measurable to document effectiveness. NORS Review (see minute 4.2.1 below) Novel Technologies in Organ Transplantation a working party to consider international evidence is now set up. National Referral Service/ODT National Hub and Technology Transformation these two initiatives are combined and approval to proceed with the first phase has now been secured. A business case is being prepared for submission to the four Health Administrations Additional activities include: Proposals to establish a peer review system are expected in the Autumn Work with coroners is underway and includes a prospective study of the circumstances in which coroners refuse donation 2

Workforce profiles project (see minute 10 below) The next phase of the 'Six Big Wins' project was given the go ahead by CPB and will focus on a number of areas; especially SNOD involvement in the consent conversation. Work on implementing processes to support the new Welsh legislation is well underway. The first phase of building the new Organ Donor Register is complete and the register will go live in Spring 2015. J Neuberger stressed the need to involve the National Clinical Leads for both Retrieval and Donation in the changes being made to ensure integration with existing processes. S Johnson reported on a 7m funding gap for next year. Discussions are taking place with the four Health Administrations to reduce this funding gap based on financial savings that occur as a result of transplants. Cash releasing cost improvement programmes are being sought, such as the National Hub and Technology Transformation. J Neuberger stressed the need to work with patients and patient groups to ensure a co-ordinated approach. R Ploeg raised the question of whether NHSBT R & D funding could be considered for HLA typing. As this is not a service commissioned or run by NHSBT this is not possible. 4.2 Advisory Group/Clinical Committees: Roles and Responsibilities and Workplan for 2014/15 AGChC(14)15 Members noted and endorsed the principles of the draft document outlining the roles and responsibilities of the Chairs, Members and support leads for the Advisory Groups and Clinical Committees. This would now be distributed to all relevant parties. K Zalewska 4.2.1 NORS Review A stakeholder event is to be held later in July, for which details have been circulated. Members were asked to respond and to attend the stakeholder event if at all possible. Anyone unable to attend the event will be able to submit written comments or submit their views during transplant centre visits. Initial proposals/ findings are expected in the autumn with recommendations due in the spring of next year. 4.3 Review of admin support process Various resources are available to support the Chairs and other members to deliver Advisory Group aims. These include the support of the Administrative Lead and Statistical Lead. Monthly telecons with these Leads should continue in order to plan work and address outstanding issues. In order to respond to the increased number and complexity of requests for statistical support from members of Advisory Groups, the Chair should agree all requests with the Stats Lead and agree a programme of work. 4.4 Format of papers for Advisory Groups/Clinical Committees Members discussed the preferred format of papers circulated for Advisory Group/Clinical Committee meetings. Previously papers were embedded within an agenda in Word format which meant that the embedded documents could not be opened by those using an Ipad or Mac. The alternative was a long pdf string of papers which was difficult to manage. 3

M Potter reported that trials are currently taking place with Boardbooks (an electronic board portal). The board package is created using proprietary software, instead of converting entire documents into files. Until this product is trialled successfully it was agreed that papers would be circulated as individual pdf documents clearly labelled and in the order they appear on the agenda. 4.5 Update on Novel Technologies in Organ Transplantation (NTOT) On behalf of G Oniscu, C Williment reported on progress with NTOT. Five organ specific sub-groups have been examining evidence and, if appropriate, this will form the basis of a business case for future commissioning. A meeting will take place in September where representatives from the health administrations, commissioners and Advisory Group Chairs can comment on the report with a view to it being finalised early next year. J Dark, G Oniscu and C Watson will produce a draft list of data fields required for evaluation of machine perfusion for Chairs to take to the autumn round of Advisory Group meetings for consideration. This should also be circulated to A Powell for TSS and R Johnson for Statistics & Clinical Audit in order to assess the implications of any changes on other activities. This will be discussed again at the Advisory Group Chairs Committee meeting in November, following consideration by the various Advisory Groups. 4.6 Review of NHSBT Data Access Policy AGChC(14)16 Members noted the current data access policy and discussed the need to update the document. In light of changes to some international practice in facilitating better access to registry data it was felt that the policy should be reviewed. J Neuberger agreed to produce a revised version for Members to comment on within a 2 week timeframe. 4.7 Representation on Advisory Groups: DoH & Commissioners The question was raised whether representatives from the four Health Administrations and commissioners should be included on Advisory Groups. It was agreed that for most Groups one commissioner representative would be sufficient although it was recognised that others should attend if appropriate. J Neuberger agreed to liaise with NHS England to seek their views. Representation from the Health Administrations should only be sought as and when required. K Zalewska J Dark/ G Oniscu/ C Watson J Neuberger J Neuberger 4.8 Nomenclature for the classification of patients on the transplant list J Neuberger questioned whether the classification of patients on the transplant list should be simplified for all organs. However, as some organs used three and others two classifications, it was agreed to retain the status quo 4.9 Living Donor Kidney Transplantation Strategy: 2020 AGChC(14)17 L Burnapp outlined the key aims and objectives of the new Living Donor Kidney Transplantation Strategy: 2020. These are to: Increase LDKT activity for both adult and paediatric patients Maximise patient benefit by ensuring that all suitable recipients have equity of access to LDKT Maximise opportunities for suitable donors and recipients to contribute to and benefit from the shared living donor pool. 4

The Strategy was approved by the Board and will be implemented through a sub-group of the Kidney Advisory Group, with oversight by the 2020 Strategy Oversight Group. J O Grady reported that debates around living liver donation will be taking place in September. A fixed term working unit (FTWU) of the Liver Advisory Group is working specifically on living liver donation. It was also noted that Harefield Hospital had put forward a proposal to both NHSBT and NHS England to restart the living donor lung programme. 4.10 Patient risk event A meeting is planned for October 2014 to look at how NHSBT can work with patients and patients support groups to improve communication around the risks of transplantation. Sir David Spiegelhalter, FRS, Professor of Public Understanding of Risk at the University of Cambridge, will participate as will two patients (one pre and one post transplant); Prof Chris Watson, on behalf of the clinical transplant community; and legal representatives. Further details will be circulated in due course. 4.11 National Donation & Transplantation Congress There are no plans to hold a Congress in 2014 due to financial constraints although proposals have been put to ODT SMT for a Congress in March 2015. The Congress could be used as an opportunity to host other events associated with donation and transplantation, including stakeholder events for Solid Organ Advisory Groups and the Retrieval Forum. Members recognised the benefits for transplantation of the Congress and showed unanimous support. C Williment will look into the possibility of incorporating these into the planning for the Congress. 5 UPDATE ON NATIONAL HISTOPATHOLOGY AUDIT 5.1 Work is progressing on the audit and an update will be reported at the next meeting. C Williment R Cacciola 6 REPORTS FROM CHAIRS ON APPROACHES TO ENGAGING WITH PATIENTS GROUPS 6.1 Liver the various patient support groups have come together to form a new group and now attend LAG and have been invited to attend the Fixed Term Working Unit meetings. Representatives have interacted very positively with lay members. In order to encourage ownership, a patient group representative will also be asked to chair the Liver Patient Support Group meeting. Kidney a number of patient groups are currently involved and work is ongoing to encourage more groups to attend. The agenda is partly prompted by previous requests and will be reviewed. Cardiothoracic this has not met for a couple of years and identifying more groups is proving challenging. An agenda is being developed for a meeting later this month and it is anticipated that future meetings will be chaired by a patient group representative. Ocular Tissue this last met in 2012 with limited patient group involvement. Discussions are taking place on incorporating lay member and patient group representatives on OTAG. 5

J Neuberger agreed to liaise with NHSBT Communications about developing wider channels of communication with patient groups. All clinicians recognised the importance of providing high quality data for all interested parties and in line with the philosophy of the NHS. J Neuberger 7 INTRODUCTION OF THE SCOTTISH MODEL FOR DONATION AGChC(14)18 7.1 Susan Hannah gave a presentation on the DCD screening tool being piloted within Scotland including preliminary data as at 30 th April 2014. Members commented on: The methods of validation for the data The co-incidental decline in numbers of DCD donors at a time when a number of teams, including Scotland, are changing the way that DCD donors are referred. The reasoning behind the choice of hospitals on the provisional offering form The lack of a comparison tool/prospective audit 8 LOCAL TRANSPLANT LIST MANAGEMENT 8.1 J Neuberger highlighted the issue of errors in transplant list management which had arisen at transplant centres, H & I labs or within NHSBT and reminded members of the need for centres to regularly check the details they hold against those on ODT on-line to identify any discrepancies. A report on waiting list status is sent out to centres monthly by NHSBT and should be checked by centres in order to identify any errors. 9 GOVERNANCE UPDATE AGChC(14)19 9.1 J Dark reported on trends in clinical governance incidents and in particular where clusters of complaints have been received. These have included delayed retrievals; kidneys damaged because of incorrect packaging; and surgical teams changing their mind following acceptance of an organ. Issues with poor communication within retrieval teams could possibly be tackled via peer review. J Dark and A Warrens agreed to liaise to see if the BTS could help improve communications to try to resolve problems caused by surgical teams changing their mind. For the autumn 2014 Advisory Group meetings J Dark will be producing organ specific detailed analysis of incidents for discussion. 10 DATA FROM WORKFORCE DESIGN PROJECT 10.1 E Poppitt gave a presentation of data from the Workforce Design Project which was established to design a workforce model for SNODs to meet the strategic aims and targets of the TOT2020 strategy. Members were asked to consider the potential benefits of piloting a refinement of donor criteria based on the evidence presented. The question of whether NORS retrieval attendance may fit more appropriately under operational improvement projects or under the NORS Review would be considered by A Powell and reported back to the next meeting. J Dark/ A Warrens A Powell 6

Members agreed the need for a prospective paper exercise on the potential for DCD efficiencies with a clear aim, audit, outcome and timings. The Committee requested sight of the audit plan prior to commencement of the work. Members were asked to contact Ella Poppitt to provide clinical input required for the process. E Poppitt All 11 CHANGE PROJECT UPDATE 11.1 Business Change Update Members received the following update on planned projects: DCD kidney delivery planned for late August 2014 Opt out system & register (new ODR) Implementation targeted for Q1 2015 Donor Registration Transformation (DRT) Establishing the correct user interface for SNODs has taken longer than expected. Implementation of phases 1 & 2 will be later this year. ODT Infrastructure Refresh completion planned for Q4 2014 Workforce Profiles (Phase 1) Review of SNOD role undertaken outcome and recommendations due at the end of Q3 2014 Transplant Information Pathway New project looking at using technology and partnering with the renal data collaboration National Hub programme Executive approval and funding has been committed to commission external resources to define the programme. The resulting programme business case is to be used to strengthen the case for funding. Discussion took place on the best method of engaging Advisory Groups and transplant centres in business change delivery. Various options for engagement were considered and it was agreed that this Committee should be used to drive change and promote discussions within Advisory Group meetings. The possibility of appointing a medical informatics lead/it expert would be pursued who could then link in with the Advisory Groups. Members agreed to provide J McNeill with the name of a link person from each Advisory Group, NRG & NODC. A paper on this proposal will be submitted to the next Board meeting and a copy will be provided to members. Clear timescales will need to be included for milestones for the project. Chairs J McNeill 12 ANY OTHER BUSINESS 12.1 J Neuberger reported on a formal approach from the London Clinic to undertake deceased donor liver transplantation. Further details need to be agreed. The Liver Advisory Group will establish a scrutiny group to ensure compliance with relevant processes/rules. 12.2 Two years ago the Chair of UK Donation Ethics Committee wrote to the Secretary of State requesting that any reference to the administration of Heparin to potential DCD donors be removed. This will require a change in legislation and therefore input is required from other organisations in support of this request. A consensus conference on DCD and antimortem interventions, including the Heparin issue, is being hosted by NHSBT in autumn 2014. Whilst the conference will major on critical care, support is needed from clinicians in retrieval and transplantation. Topics will include the use of Heparin, femoral cannulation, extubation, and cardiopulmonary resuscitation. Recommendations from the conference will be fed back to the Department of Health. 7

12.3 Donor numbers are changing. Late last year there was an increase in DBD donors whilst the number of DCD donors appeared to be flattening out. Recently the number of DBD donors has flattened out, albeit at a higher rate than previously, and DCD donor numbers have been decreasing. There is uncertainty as to whether this is as a result of a variation in the pool of donors or of the various factors that influence that pool. It was noted that P Murphy would be submitting a paper on this issue to the next meeting. P Murphy 12.4 Current national guidelines do not give criteria for diagnosing brain death in infants less than 2 months old so DBD donation cannot take place. The Academy of Medical Royal Colleges has declined to produce guidance due to a lack of confidence in making this decision. NHSBT would welcome clarification as other countries do have guidance on this. It was noted that both the Royal College of Paediatric and Child Health and the UK Donation Ethics Committee are separately broaching this issue. 13 FURTHER MEETING DATES FOR 2014: 13.1 Tuesday, 9 th September 2014 Birkbeck College (Room MAL541), London Wednesday, 26 th November 2014 London venue to be confirmed July 2014 8