NHS BLOOD AND TRANSPLANT ORGAN DONATION & TRANSPLANTATION DIRECTORATE

Transcription

1 NHS BLOOD AND TRANSPLANT ORGAN DONATION & TRANSPLANTATION DIRECTORATE MINUTES OF THE TWENTY- SEVENTH MEETING OF THE LIVER ADVISORY GROUP HELD ON WEDNESDAY 13 th MAY 2015 LONDON PRESENT: Prof John O Grady Ms Helen Aldersley Dr Varuna Aluvihare Dr Elisa Allen Mr John Crookenden Dr James Ferguson Mr Paul Gibbs Dr Bill Griffiths Prof Nigel Heaton Mr Ernest Hidalgo Mr Edward Holland Mr Emir Hoti Dr Diarmaid Houlihan Dr Mark Hudson Mr Charles Imber Mrs Rachel Johnson Dr Rebecca Jones Ms Wendy Littlejohn Dr Alastair MacGilchrist Prof Derek Manas Dr Patrick McKiernan Mr Jonathan McShane Mr Paolo Muiesan Prof James Neuberger Mr James Powell Mrs Kathleen Preston Dr Sanjay Rajwal Ms Susan Richards Dr Douglas Thorburn Ms Martine Walmsley Chairman Recipient Co-ordinator Representative Physician, King s College Hospital Statistics & Clinical Studies, NHSBT Liver Transplant Consortium Physician, Queen Elizabeth Hospital, Birmingham Surgeon, Addenbrooke s Hospital, Cambridge Physician, Addenbrooke s Hospital, Cambridge Surgeon, King s College Hospital, London Surgeon, St James s University Hospital, Leeds Deputy for John Richardson, Duty Office Surgeon, St Vincent s Hospital, Dublin Physician, St Vincent s Hospital, Dublin Physician, Freeman Hospital, Newcastle Surgeon, Royal Free Hospital, London Head of Organ Donation and Transplantation Services, NHSBT Physician, St James s University Hospital, Leeds Recipient Co-ordinator Representative Physician, Royal Infirmary of Edinburgh Deputy Chair and Surgeon, The Freeman Hospital Physician, Birmingham Children s Hospital Lay Member Surgeon, Queen Elizabeth Hospital, Birmingham Associate Medical Director, NHSBT Royal Infirmary, Edinburgh Lay Member Paediatric Hepatologist Regional Manager, Organ Donation, NHSBT Physician, Royal Free Hospital Liver Transplant Consortium IN ATTENDANCE: Mrs Kamann Huang Clinical & Support Services, ODT APOLOGIES & WELCOME Dr Alastair Baker, Prof Dave Collett, Prof John Dark, Prof Sue Fuggle, Dr Alex Gimson, Dr Edmund Jessop, Prof Darius Mirza, Mr John Richardson and Mr David Stagg 1

2 1 DECLARATIONS OF INTEREST IN RELATION TO AGENDA LAG(15)1 1.1 There were no declarations of interest. 2 MINUTES OF THE MEETING HELD ON 19 November 2014 LAG(M)(14)2 2.1 Accuracy The minutes of the previous meeting were agreed as a correct record. 2.2 Action points LAG (AP)(15) All action points have been completed or are listed on the agenda with the exception of those listed below: AP11 Fast tracking of retrieved organs Provide clarification to S Richards on fast tracking of DBD organs with cold ischaemia time of 4 hours or more which conflicts with the current policy of two hours. Post meeting note: J O Grady stated that this must be a procedural as opposed to a policy issue. J Neuberger will discuss this with each of the Transplant Centre Directors for consideration. J Neuberger 2.3 Matters arising, not separately identified There were no other matters arising. 3 ASSOCIATE MEDICAL DIRECTOR S REPORT 3.1 Developments in NHSBT J Neuberger John Asher appointed in a two year post as Medical Health Informatics Lead to act as the interface between ODT with the clinical community and with Advisory Group Chairs. 3.2 Governance issues Liver splitting activity LAG(15) It was reported that the number of livers being split have decreased over the last two years; 7 out of 72 livers is the lowest number seen to date. J O Grady to ask P Friend, Chair of the Split Liver FTWU, to look into the following: - reasons for the low number of livers being split; - P Muiesan's report of an incident regarding communication between transplant centres regarding utilisation of the right lobe; - LAG's recommendation to monitor acceptance and rejection rates; - accreditation of surgeons to split the liver. It is hoped that a report can be presented at LAG in November. To include either A Langford or A Taylor on the FTWU. J O Grady 2

3 3.2.2 Non-compliance with allocation No non compliances with the allocation of livers were reported Detailed organ specific analysis of incidents for review LAG(15) In the absence of J Dark, J Neuberger reported that a major retraining programme will be undertaken for taking biopsies following an incident of a recipient requiring re-transplant. Members were reminded that all minor and major incidents, including in trials and studies, needs to be reported in a timely manner for comprehensive monitoring. K Preston highlighted that the NORS review identified communication, sharing of information and lack of feedback from transplant centres as areas requiring improvement Summary of CUSUM monitoring of outcomes following liver transplantation LAG(15) The latest CUSUM reports were presented with no signals over the six month period since November There was discussion about whether these should be published on the ODT website. J Neuberger reported that following a CUSUM trigger: - transplant centres should be able to make an initial comment on the background to the trigger; - this is followed by a timely investigation with commentary on reasons for any delays. J Crookenden suggested that the enquiry could be undertaken by independent people outside the transplant centre. It was confirmed this was standard practice. - Once completed, the outcome of the enquiry is circulated and could be in the public domain. J O Grady and to agree a mechanism and timeframe for reporting the outcomes on the website and to ensure only validated information on CUSUM triggers will be published. It must be highlighted to the public that when a trigger is made this does not automatically indicate a clinical issue. J O Grady/ Contra-indications to liver donation LAG(15) It was commented that centre-specific criteria for the offering of livers causes problems with the Duty Office as the information technology cannot undertake this automatically. In addition, variation in the offering criteria amongst centres may raise disparity of access to organs between regions. LAG agreed that the uniform national policy for offering DBD and DCD livers is to be used and to remove centre-specific criteria. Offer rates to individual centres will be monitored Feedback from NRG D Manas reported that NRG agreed that the HTA A form currently completed by surgeons can be delegated to others for completion within their own centre to prevent delays in organs leaving. S Richards stated that this information had not been communicated to the SNODs. D Manas and S Richards will discuss the issue outside of LAG. D Manas/ S Richards 3

4 J Neuberger reported that 'Wash Up Meetings' to follow up on actions in a timely manner will be reinstated at NHSBT following Advisory Group and main stream meetings to avoid this sort of situation arising Update from NORS The NORs report has been accepted by the Board and will be published with recommendations on 21st May. An Implementation Group will be set by R Ploeg to implement the changes. 3.3 IT Progress report LAG(15) Members were informed that a business case for a new IT system for ODT had been put forward to the DoH for funding, backed by their Chief Executive, I Trenholme. J Neuberger stated that the current IT system was not fit for purpose. J O'Grady commented that the lack of a robust IT system had made even minor changes e.g. changing listing criteria for super-urgent liver disease very difficult. J Neuberger noted the comments made. It is hoped that the new IT system will be implemented within a five year window. 4 STATISTICS AND CLINICAL STUDIES REPORT 4.1 Summary from Statistics and Clinical Studies LAG(15) has returned from a six month secondment. She informed members that E Allen will be going on maternity leave in June and she will stand in for Elisa, supported by K Martin. The stats department will also be losing two other senior members of staff going on maternity leave. 4.2 Risk Model for post-transplant survival - LAG(15) LAG members approved the post-transplant survival model which identified a list of risk factors that were statistically/clinically relevant. Where appropriate both adjusted and risk-adjusted survival estimates will be provided. 4.3 Reports to centres on organs declined - LAG(15) Members commented that the reports need to reflect in real time what happens to livers declined and subsequently used and to receive feedback on this. 4.4 Update on NHS England funded Clinical Fellow J O'Grady informed LAG that Dr Emily Dannhorn at the Royal Free Hospital has been appointed as the Clinical Fellow starting in September. Dr Dannhorn will work in conjunction with NHSBT Statistics & Clinical Studies.and Prof A Sanchez-Fueyo at King s College Hospital. 4

5 5 NATIONAL OFFERING SCHEME - LAG(15)10(a) (b) (c) & (d) 5.1 At the last LAG meeting, three allocation models were presented. Proposed Logistics of an Adult National Liver Offering Scheme M Walmsley highlighted the necessity for good evaluation, monitoring and prevention of any inequity to access to organs for patient groups; which translates as lives. The new Offering Scheme needs to be evaluated in real time but concern was expressed regarding the lack of an efficient IT system. J Neuberger reported that the concerns could be addressed by running the new offering scheme in parallel with the current system. NHSBT Statistics will support the parallel evaluation of revised offering proposals guided by LAG. Members expressed concern regarding two groups of patients being disadvantaged; those under the age of five years and the year age group. K Preston supported any policy change being evidence-based and free of emotive argument. Currently five years of data are analysed. N Heaton recommended that looking at 20 years of historical data could prove more meaningful. It was reported that a FTWU led by Pat McKiernan has been looking at ways to resolve this but the listing criteria needs to be based on evidence/benefit. LAG will wait to hear feedback from the Transition and Paediatric Diseases FTWU on its recommendations. National Liver Offering Sequence LAG approved the proposal but there needs to be consultation with the transplant centres. This will include discussion of CIT and transport, especially for DCD organs. Options for low UKELD variant syndromes The Patient Support Group meeting (22 January 2015) did not support proportional allocation as a mechanism to allocate organs to variant syndromes. J. Ferguson spoke to a paper on the options, including allocation of extra points. After discussion, a vote took place with strong support emerging for the proportional allocation system. / Duty Office/ J Neuberger P McKiernan J O Grady/ D Manas 6 CORE GROUP AND FTWU REPORTS - LAG(15) HCC downstaging: The FTWU has been active since March. E Allen to include LAG members and centre directors regarding future NHSBT communications. FTWU on liver splitting: Peter Friend is the Chair person. FTWU on the Utilisation of Livers: This has just been set up with the first teleconference held. Mr I Currie is the Chair person and involvement of K Preston was confirmed. Alcohol policy: The FTWU is chaired by Dr Andy Holt and is on course to report by the next LAG meeting. E Allen 5

6 7 DASHBOARD ON LIVER TRANSPLANTATION ACTIVITY AND ORGAN UTILISATION LAG(15) A metric for each centre was presented to members for information only. It was noted that overall the metrics appear to demonstrate greater convergence between centres relative to previous reports. The metrics are not to be published on the ODT web site at present as the tool is considered to be under evaluation. 8 DECLINED LIVER OFFERS LAG(15) Members were asked if they wished to continue receiving information on reasons for livers declined from two stats sources i.e. the Annual Report presented in Spring as well as from the monthly reports to centres on organs declined. The LAG requested to continue producing the two types of reports in the future. 9 MULTI-VISCERAL TRANSPLANTATION LAG(15)14(a) and (b) 9.1 It was reported that the HLA phenotype is becoming increasingly available before the liver is routinely offered. Current practice has therefore led to those recipients requiring a combined liver and kidney transplant being disadvantaged with increasingly long waiting times. A proposal has been developed to resolve this, which went live on 5 th May 2015 for a trial period of three months. The trial will be monitored. The proposal will allow liver zonal centres to consider their combined liver and kidney patients with the knowledge that a kidney will be available to them for these patients, within a certain time frame. 10 UPDATE ON ADULT TO ADULT LIVE DONOR TRANSPLANT LAG(15) D Manas reported that the proposal, which has agreement from all centres, has been sent to E Jessop, National Commissioning, for approval. 11 COMBINED LIVER AND PANCREAS RETRIEVAL 11.1 An issue was raised at PAG regarding the utilization of pancreas with an accessory right hepatic artery being a regular reason for the loss of transplantable whole organs. It has previously been agreed with LAG that discarding the pancreas on this account should be a rare event and in most cases, either the accessory artery can be divided outside the pancreas, or dissected from the pancreas without paraenchymal damage. This has been taken to NRG. D Manas informed members that an agreement is in place from PAG that all communication between the liver and kidney surgeon should also be relayed to the pancreas surgeon. 12 OUTCOME OF APPEALS LAG(15) J O Grady commented that the appeals for the six month period from 1 November to 30 April 2015 overall showed a longer response time and the non response rate was going up. 6

7 13 PROVISION OF STANDARD DATA SETS FOR LIVER TRANSPLANT LAG(15) The dataset was approved subject to updating reference of FK506 to tacrolimus. 14 AUDIT ON DESPATCH TIME FOR DCD LIVERS AND OPTIONS TO REDUCE PAPERWORK LAG(15) In the absence of D Mirza, it was reported that this is an ongoing issue. A letter has been sent to NRG 15 BOWEL ADVISORY GROUP 15.1 Report from the Bowel Advisory Group meeting: 4 March No oral report was given in the absence of D Mirza. 16 ANY OTHER BUSINESS E Hidalgo raised the issue that their centre were turning down patients due to a lack of beds in ITU. J Neuberger encouraged all members to report any such incidents experienced within their own centre. - P Gibbs requested that liver/small bowel prioritisation be discussed. He will produce a report for at the next LAG meeting in November. P Gibbs - J Neuberger informed members that we are still awaiting guidance from the DoH for liver transplants to be undertaken privately at two London hospitals. - NOVEL Technologies chaired by G Oniscu will evolve into another Advisory Group to co-ordinate and facilitate research with Commissioners on board. The group will play an important role for Service Development and will be seeking a Chairman as well as representation from the Solid Organ Advisory Groups. The Terms of Reference are to be drawn up and administrative support will be provided. Any interested members are to contact J Neuberger. - B Griffiths requested that DCD outcomes relating to graft survival and re-transplant rates be included in the Liver Annual Report. 17 DATE OF NEXT MEETING: Wednesday 18 November 2015 MSE Meeting Rooms, London 18 FOR INFORMATION ONLY 18.1 Transplant Activity report: March LAG(15) A paper outlining the activity of all organ transplants up to March 2015 was given Group 2 Transplants LAG(15) A paper on Group 2 transplants was presented to members. 7

8 18.3 Minutes of the Bowel Advisory Group meeting: 8 October 2014 LAG(15) Minutes of the Bowel Advisory Group meeting held on 8 October 2014 were presented to members Minutes from the Clinical Retrieval Group: 13 February 2015 LAG(15) Members received a copy of the minutes of the Clinical Retrieval Group meeting held on 13 February Update on Patient Consent Schème LAG(15) Of the 6786 patients registered since April 2008 on the national list for a liver transplant, 99.7% have given consent for use of their personal data. Organ Donation & Transplantation Directorate May 2015 Administrative Lead: Kamann Huang 8