NATIONAL ORGAN DONATION COMMITTEE (NODC) MINUTES OF THE TWELTH MEETING HELD ON TUESDAY 14 TH JUNE 2016 12 BLOOMSBURY SQUARE, LONDON PRESENT: Dr Paul Murphy (chair) National Clinical Lead for Organ Donation Miss Joanne Allen Performance & Business Manager, ODT Ms Liz Armstrong Clinical Governance Support Manager, ODT Ms Eleanor Boyce Acting Regional Manager Northern Ireland Mrs Sarah Beale Service Development Manager Mr Anthony Broderick DCD Assessment Programme Lead Dr Paul Carroll Regional Collaborative representative East of England Mr Anthony Clarkson Assistant Director Organ Donation & Nursing Ms Rebecca Curtis Statistics and Clinical Studies NHSBT Mrs Susan Duncalf Regional Manager- North West & Yorkshire Dr Dale Gardiner Deputy National Clinical Lead for Organ Donation Ms Amanda Gibbon Donation Committee Chair Dr Kay Hawkins Chair, paediatric subgroup of NODC Ms Rachel Johnson Statistics & Clinical Studies NHSBT Ms Sally Johnson Director Organ Donation and Transplantation Mr Benjamin Jones Clinical Research Fellow, Imperial College Dr Zahid Khan Consultant In Intensive Care Ms Lesley Logan Regional Manager Scotland & Northern Dr Alexander Manara Regional Collaborative representative South West / FICM rep Prof Derek Manas British Transplantation Society representative Dr Justin McKinley Regional Collaborative representative Yorks and Humber Ms Marian Ryan SN-OD Regional Manager Eastern Ms Anne Sheldon Head of Referral & Offering Mr Richard Smith Consultant Gynaecology Oncologist, Imperial College Ms Margaret Stevens Specialist Nurse Research and Service Delivery Ms Rachel Stoddard-Murden Representing Phil Walton, South Wales and South West Prof Jonathan Thompson Regional Collaborative representative Midlands Dr Andre Vercueil Regional Collaborative representative London Dr Charles Wallis Regional collaborative representative - Scotland Dr Argyro Zoumprouli Regional Collaborative representative South East IN ATTENDANCE: Mrs Claire Williment Ms Amanda McEvoy Head of Transplant Development, ODT (part meeting) Clinical & Support Services, ODT Item Title Action 1. Welcome, introduction, and apologies Maria Cartmill, John Dark, John Forsythe, Dr Pardeep Gill, Dr Paul Glover, Chris Hingston, Lorna Marson, Olive McGowan, Prof David Menon, Dr Nilesh Parekh, Miss Susan Richards, John Richardson, Dr Ian Tweedie, Dr Malcolm Watters, Ms Fiona Wellington, Phil Walton, Rutger Ploeg 2. Minutes of the National Organ Donation Committee held on 2 ND Feb 2016 There were no issues arising from the minutes of the last meeting so these are now approved. 1
3. Action Points arising from the National Organ Donation Committee held on 2 nd Feb 2016 4. Most of the outstanding action points had been completed or were covered within the agenda. Of the remaining - AP1 Improved Communications PM had followed up with Ian Hampton regarding communications to ensure that the collaboratives received the necessary information in preparation for National Donation Week in September. He asked for feedback from members (after the recent regional collaborative meeting) regarding whether or not they felt empowered to communicate the relevant messages to represent organ donation. General feedback was that this information was hit and miss and there should be a follow-up email to inform those who were not able to attend the Regional Collaborative meeting and to explain how to obtain resources, who to contact and what messages to communicate. AP6 - P Murphy stated that he would be taking the question raised about confirmation of death of a potential DCD donor to NRG on 6 th July. P Murphy asked C Williment for an update on the report and action plans from the project on collaborative working with Coroners/Procurators Fiscal. C Williment stated that the report was done but it would not be ready for sharing until it had been published. Matters arising There were no separate matters arising. P Murphy/ D Gardiner P Murphy C Williment 4a 4b 4c Scout Pilot C Williment reported that the data analysis was now complete and that, on the basis of this, the DCD Steering Group has recommended that the Scout service be built into Business as Usual. The Senior Management team requested an external review which was being carried out by clinicians from Vienna and Italy. There will be a meeting in September to examine the external review and this will help to form the business case/evidence base for costings to go back to SMT in November. P Murphy and the regional CLODs will be invited to attend. C Williment recorded her gratitude to SNODs, Regional Managers, CLODS and Lesley Logan for their assistance and interaction. The committee also expressed their thanks and acknowledged their contribution. DCD heart transplantation C Williment provided a summary of the current UK experience with DCD heart retrieval - 25 hearts retrieved resulting in 23 transplants, with good outcomes compared to standard DBD donors. 10 out of the retrievals were performed using NRP and there had been no associated issues. There was general support and enthusiasm from the committee to continue this work. P Murphy stated that he had also requested that paediatric patients should be considered as part of the business case for DCD heart transplantation but the OCS device had a weight limit that would exclude donors < 45kg. Update on operational difficulties with the ODR A Sheldon provided an update on the continuing difficulties with updates to the ODR from third party partners (e.g. DVLA). As a result of these difficulties, it has been decided to delay publication of the Annual Transplant Activity report until late August. 2
4d Workforce redesign i. Designated Requestor Project 4e A Clarkson talked about the designated requestor project, He explained that work was still in the planning phase, including consultation with unions, with the intention of implementation in September / October. A Clarkson explained that an addendum would be added to the generic SNOD job spec. regarding the family pathway, and applicants would also be required to show proven Consent expertise. The posts would not have any embedded hospital role and would involve 3 x 12 hour days per week (around 9 am 9 pm), including weekends. Regional Managers would be working with Team Managers to determine specific requirements as each region was anticipated to have different needs. It was envisaged that requestors would then hand over to the co-ordinator but they would be able to continue donor coordination in order to avoid delays. The SNODs would be judged on their motivation and desire to perform this role as well as past experience etc.. ii. DCD triage A Broderick spoke about the DCD Suitability Assessment. He explained that an electronic Adobe form was used by SNODs to assess the suitability of DCD donors and this form now needed to be completed for all DCD referrals. There was a list of 5 exclusions 1. Patient aged over 80 with a non-neurological cause of death 2. Current clinical diagnosis of ischaemic bowel 3. Previous cancer in last 5 years 4. Current clinical diagnosis of multi-organ failure (inclusive of all relevant organs) and aged>40 5. Current clinical diagnosis of septicaemia/sepsis with severe multi organ failure This had been implemented nationwide on 1 st December 2015. Over 2000 forms were completed in the first 3 months and exclusions had been overruled on 19 occasions. There had been positive feedback from ODS teams, critical care and transplant centres. DCD Donor numbers continued to increase. The DCD Conversion rate from approach to actual donor had increased from 26.2% 32.3% over last 12 months with a continuous steady rise since launch. The number of consented potential DCD donors not proceeding due to recipient centres declining at offering stage had decreased from 32.8% to 26.9% since the introduction of the DCD suitability assessment. A 6 month review was underway and early indications suggested that additional exclusion criteria associated with patient age and clinical history may be applied. A formal process for Liver screening was under development and the development of a sim ple online tool at advanced stage with pilot was underway since 9 th May 2016. There will be a future development to determine Barn Door DCD donors and a survey will be carried out through the CLOD and SNOD network to check engagement. The scheme has been reviewed regularly by Chris Callaghan there will be a 6 month review shortly and a report will be circulated towards the end of August.. National Donation Congress D Gardiner thanked S Beale and members of the steering committee for supporting the organisation of the National Donation Congress. He reported that the Congress was now full and that registrations had closed, although a reserve list was being compiled. Each region has been asked to provide a poster presentation describing progress against their stretch goals. C Williment asked if there would be a need for her team to help on the day. It was noted that the content of the programme included little of interest from transplantation clinicians, who were more likely to attend BTS. All RMs and CLODs 3
5 5a STANDING ITEMS Performance Jo Allen reported on NHSBT s best year ever with a new annual record for deceased donors (DBD, DCD and overall) and patients benefiting from a transplant in 2015/16. The highlights were - o 1364 (786 DBD and 578 DCD) deceased donors against 1365 target and 3529 deceased donor transplants against 3694 target. o There were 44 more donors than our previous record of 1320 (2013/14) and 82 more than last year. When compared with the 809 donors in the baseline year for the Taskforce (2007/08), this is a 69% increase. o At 31 March 2016, there were 6437 patients on the active transplant waiting list; 443 fewer than the 6880 patients on 31 March 2015. o The overall consent rate has increased from 57.7% to 62%, hitting a high of 69% in October 2015, with a sustained green consent rate for the last three months of the year. o The DBD consent rate for 2015/16 was 69% compared with 67% last year o There were 96 living donors in March 2016, bringing the total for 2015/16 to 1070. This is 20 fewer than the 1090 living donations achieved last year and 153 short of the target. o There were 1034 living donor kidney transplants and 36 living donor liver transplants (3%) in 2015/16. o 37% of living donor kidney transplants were performed pre-emptively in 2015/16 (no change from last year), against a target of 38%. o 55% of transplants identified in the National Living Donor Kidney Sharing Schemes occurred within the 8 week window. This is an improvement on the 36% achieved last year, but a long way from the 100% target. o Following three green months for the consent rate (average 65% for Q4), the overall consent rate dropped back to 60.5% in April (63% for DBD and 59% for DCD). o There has been no improvement in reducing the number of families overriding their loved one s ODR decision, with 9 in April. o The BAME consent rate continues to be a challenge at 31% for April, against a target of 50%. o There were 109 deceased donors in April (58 DBD and 51 DCD (53:47)), against a monthly target of 120 (amber). o Annual SNOD turnover remains a challenge, with % annual turnover currently at 15%. P Murphy asked what the committee could do to help increase DCD referral rates. J Allen explained that there were different action plans for each region. J Allen was asked to make sure that the overall DCD figures were in the monthly performance report. J Allen 5b Paediatric subgroup K Hawkins had circulated papers identifying a lack of Paediatric CLODs (none in NI, Northern Region and Wales), asking the committee whether or not each region should have a Paediatric CLOD and, if so, and how they should these be resourced? Out of 240 SNODSs, there were only 16 nurses with PICU experience. There was some discussion around re-validating nurses with paediatric experience (they were now able to apply for the adult SNOD roles) or appointing more paediatric nurses to help with the demanding role of paediatric donations. Angie Scales had been appointed recently to look at this issue and she was developing a screening tool for neonates which was due to go live later in the month. 4
5c Education and training D Gardiner summarized recent and upcoming education and training events which in 2015/16 included: 4 two day CLOD Inductions in Bristol, London, Edinburgh & Birmingham, 1 Chair Induction, Birmingham, 2 two day National Intensive Care Medicine Trainee Simulation Courses at St Georges and Nottingham, 1 level 1 meeting in London 1 R-CLOD on a communication course led by a hostage negotiator and 2 pilot regional clinician training days. 6 7 The programme for 2016/17 includes: 3 two day CLOD Inductions in London, Cardiff & Edinburgh, 1 Chair Induction, March 2017, Birmingham, 3 two day National Intensive Care Medicine Trainee Simulation Courses in Nottingham, St Georges and Salford, 1 Level 1 Meeting in London, 1 Level 2 Meeting in London and R-CLOD media training. There was also funding for clinicians to attend Paediatric donation simulation days. P Murphy noted all the worthwhile work that continued to be done to make these training sessions possible. The ODT Hub A Sheldon gave an explanation of the work ongoing for the ODT Hub. The Vision was to provide a simpler, safer, responsive service that supports clinicians in matching world class performance in organ donation and transplantation, with a clinically led 24/7 support centre at its core and renewed technology as its foundation. This involved replacing outdated Duty Office technologies which were difficult and expensive to maintain. The aim was to reduce the administrative burden away from clinicians with faster, relevant and responsive services and systems. The teams involved had built in major changes to the IT infrastructure to support the improvements being made. They had been working on defining for the business case for Year 2 and are now preparing for transition to live. The ODT Hub board now needed input from key clinical representatives to explore the vision, benefits and design for a central referral and assessment model and for transplant list transformation. This input would be scheduled in with clinicians to work on streamlining all the relevant processes. The committee wanted to know if clinicians had been involved in the work so far but the ODT team stressed that they needed to build the infrastructure before involving clinicians. A Clarkson and A Sheldon would be working with J Asher to make sure that there were donation representatives and other relevant clinicians involved in the ODT Hub Programme as soon as possible. Investigation of patients who died in ED R Johnson presented a paper on behalf of Cara Hudson examining trends in donation from patients dying in, or referred from, the Emergency Department. Two groups of patients who died between 1 April 2012 and 31 March 2016 were examined: 1. Patients who met the DBD or DCD referral criteria and died in the ED 2. Patients who met the DBD or DCD referral criteria, were referred from the ED and died in the ICU These two groups of patients are compared by financial year and ODS team. Overall, 55% of patients died in an ED with the proportion falling over the 4 year period. A Clarkson 5
Of the 1551 patients who died in the ED, 1137 were potential DBD or eligible DCD donors and 177 (16%) were known to be registered on the ODR. Of these 177 patients, 82 (46%) were referred, and 20 of the 177 patients (11%) proceeded to donate. For the 960 patients who were not registered on the ODR, 24 (2.5%) proceeded to donate. Between 1 April 2012 and 31 March 2016, there were 2,850 ED patients (patients that died in the ED or were referred from an ED, irrespective of location of death) who met the referral criteria. 1,994 (70%) of these patients were referred. These results proved that patients were more likely to donate if they were on the ODR and R Johnson explained that there was a marked variation across teams. PM asked for the neurological cause of death data to be added. C Hudson/ R Johnson 8 Devastating brain injury A Manara presented his experience of introducing a devastating brain injury protocol in Bristol, arguing that early prognostication in these patients is not always accurate and can lead to inappropriate decisions. The paper presented case histories to support the recent recommendations of the Neurocritical Care Society that treatment withdrawal decisions should be delayed by up to 72 h in order to improve prognostication, enhance end of life care and increase the opportunities for organ donation. Dr Manara reported that, since introduction of the protocol, five patients whose treatments would have been withdrawn in the Emergency had survived, two of whom had returned to an independent existence. He also reported that the opportunities for organ donation had also increased. 9 10 Finally he reported that the Joint Standards Committee of the ICS and Faculty of Intensive Care Medicine had formed a working group to review the issue and consider further guidance. P Murphy added that he had presented the data to a number of collaborative and, despite some concerns, the door is opening. The committee had some concerns about this undermining the ED Big Win project and over-stretching ICU resources. It was agreed that more work was required and A Manara will share this data at Congress. Timings of the donation pathway R Johnson presented a paper showing that the length of the organ donation process and the relative timings of the key milestones in the pathway. There was particular concern that families were declining consent because of time delays and that treatment withdrawal in DCD donation had now been displaced into the early hours of the morning. There was some discussion about over-complicating the process. The Senior Management Team had agreed to look at these issues and this would come back to the next agenda. PM thanked the Statistics team for the great data. Uterine Transplantation Ben Jones and Richard Smith from Imperial College Hospital gave a presentation on this project. Richard explained that 13 uterine transplants had been carried out world-wide, 11 from living donors and two from DBD donors (both of which were unsuccessful). The team described their ambition to establish a deceased donor uterine transplant programme and shared their protocol for donor selection and recipient care in the UK. They outlined that ethics approval had been granted and that they would initially be funded by a bespoke charity, Womb Transplant UK. They already had the backing of RINTAG and the National Retrieval Group as well as good feedback from the London collaborative. M Stevens was drafting consent forms and training was being prepared for SNODs. The protocols and a safety committee were in place. A number of anxieties were expressed by Committee members: A Manara Clinical & Support Services 6
11 12 Would the donor family have any potential claims on the baby? The team had not considered issues surrounding invasion of privacy of the donor and the sensitivities of the donor family or nursing staff There was very considerable unease about launching such a programme without funding from NHS England Whilst there were no objections in principle to uterine transplantation, there was a clear directive that these issues would need to be resolved before a programme could be supported. M Ryan, A Zoumprouli and A Clarkson were tasked with seeking to resolve some of the issues. Olfactory bulb sampling in brain dead donors A Zoumprouli discussed a research proposal from St George s Hospital London to sample olfactory bulb tissue from brainstem dead donors, the intention being to culture tissue that might support nerve regeneration in patients with spinal cord injury. It was noted that this was a research area receiving considerable attention world-wide and this study had already attracted considerable funding from the UK Stem Cell Foundation. The key element of the proposal was that olfactory bulb tissue would be obtained via a bi-frontal craniotomy to be performed before organ retrieval in consented DBD donors in St George s. A number of anxieties were expressed by Committee members: How long would the craniotomy take? Would the craniotomy result in physiological instability and threaten organ retrieval? Would olfactory bulb tissue be viable in patients who were brain dead? Could the tissue be sampled trans-nasally? Would the research proposal jeopardise a family s support for organ donation? It was noted that P Murphy was meeting with the research team to explore these difficulties in more detail. Review of donation reimbursement D Gardiner reported on SMT s request to reduce expenditure on donor reimbursement (which rises every year) and presented several options for how this might be achieved. The following options received some support, with Option 1 the most favoured Option 1 - reduced tariff for every consented / authorised donor Advantages: simple change, consent / authorisation is a 2020 strategy Disadvantages: linked to donor not donation Cost Saving: 16% reduction Option 2 - sliding scale tariff Every consented / authorised donor, overall reduced amount, but scaled such that the first few donors receive more, which reduces with more donors Advantages: minimal change, consent / authorisation is a 2020 strategy, smaller hospitals not disadvantaged Disadvantages: linked to donor not donation, larger hospitals may see a greater reduction Cost Saving: 16% reduction Option 7 (linked to time) Following consent / authorisation, a recognition payment for time and effort is given for every hour until donation completed in theatre or donation stood down (eg 100/hour; limit 2400 per donor) M Ryan/ A Zoumprouli/ A Clarkson Advantages: Incentivises NHSBT efforts to reduce the time of the donation pathway in DCD especially if time was reduced, might reduce family overrule and increase consent / authorisation; Recognises hospital time and effort 7
Disadvantages: Cost Saving: Might lead to gaming and pressure on SNODs, unclear effect on hospital individual donation recognition moneys, DBD likely to take 24 hours (maximum amount), linked to donor not donation less predictable D Gardiner to work with finance to assess potential savings from each option in more detail. D Gardiner 13 Review of the CLOD role D Gardner explained that the aim was to future proof the CLOD role and start a similar process to that carried out for the SNOD role. He had circulated background papers and he asked members to give their views by filling out the Strengths, Weaknesses, Opportunities, Threats to the CLOD role on four flipcharts and these were the outcomes -. STRENGTH CLOD ROLE LOCAL KNOWLEDGE Politics Personalities Resources Geography/Depts. Support within Trust Support for SNOD Assistance Local Comms Activities/ Education Clinical expertise locally Process driven expertise Clinical credibility amongst Dr s Wider networks/networking Named local presence (esp. during embedded time Maintain profile of OD within Trust PLAYER/MANAGER of local Team LEADER/VISION Feed in National Knowledge Support/expertise on Committee OD Champion Influence Help increase donor numbers Innovation The seat of the institutional memory Accountability Proven model (SNOD, CLOD & Chair) Influential as drivers of change locally Become more influential within hospital, even when move on to new roles Education, credibility, visibility of donation into ICU/Trust/HR business Advocates for End Of Life Care 8
WEAKNESSES No external incentive to do well Not performance managed Staleness Very different for RCLODS to do this Poor induction locally (some self-appointed (still)) Lack of influence Lack of clarity regarding appointment process Undefined time management/demands Limited influence (for younger CLODS) Variable engagement with teams/collabs locally Not enough time within job plan it is a peripheral/extra role Difficult to remove from post if not effective Expensive Some weak Lack of vigour Lack of leadership skills/how to manage change Lack of training Spread too thin Complacency Geographically distant Until recently no appraisal No stick, all carrot No incentive to motivate or improve THREATS Not influential on ITU/hospital/community Disengagement of ITU/hospital/community and whole Trust No increase in donors Loss of skill/knowledge Don t take sweets away from kids Loss of goodwill Performance Bad message ultimately money is how we value 1/2 PA = can t ring-fence (a session) Review of role/pas within region Alienate Trusts if withdraw PAs Increasing pressure on NHS Challenges to recruit Oct should we employ/pay directly? (NHSBT) financial pressures Risk of losing ground Risk of losing SNODS OPPORTUNITIES Specific direction by NHSBT of CLOD activity currently very variable time and energy spent Monitor performance Volunteer Role - Stronger performance management NHSBT involvement in appointments - rethink appointment process Redistribution of PAs momentum from NHSBT Training of advanced trainees as future CLODS NHSBT Comms with CLODS & RCLODS 9
Specialist Roles - Education - Paediatrics - Promotion Hospital development (to replace SNODS) Better induction More R-CLOD to CLOD mentoring 14 15 16 Any other business CTAG have advised that they no longer wish to see the use of T3. P Murphy to send a letter with a revised donor care bundle For information education and training update St John s Award Dates of next meetings Tuesday 4 th October 2016 - Assoc of Anaesthetists, Portland Place Close P Murphy 10