NHS BLOOD AND TRANSPLANT

NHS BLOOD AND TRANSPLANT MINUTES OF CARDIOTHORACIC ADVISORY GROUP HEART MEETING HELD AT 10AM TO 12:45PM ON TUESDAY 29 TH APRIL, 2014 AT THE FRIENDS HOUSE, EUSTON ROAD, LONDON PRESENT: Mr S Tsui, Chair Mr N Al-Attar, Surgeon, Golden Jubilee Hospital, Glasgow Ms T Baker, Transplant Business Manager, Harefield Hospital, Middlesex Dr N Banner, Cardiologist, Harefield Hospital, Middlesex Dr M Burch, Cardiologist, Great Ormond Street Hospital, London Mr S Clark, Surgeon, Freeman Hospital, Newcastle Prof J Dark, ODT National Clinical Lead for Governance and Organ Utilisation, ODT, NHSBT Dr S Fuggle, Scientific Advisor, ODT Dr R Kirk, Consultant Paediatric Cardiologist & Transplant Physician, Freeman Hospital, Newcastle Mr M Knight, Lay Member Representative Dr, Statistics & Clinical Studies, NHSBT Dr S Lim, Cardiologist, Deputy for Dr J Townend, Queen Elizabeth Hospital, Birmingham Ms L Logan, Regional Manager, Organ Donation Services, ODT Mr J Mascaro, Surgeon, Queen Elizabeth Hospital, Birmingham Dame J McVittie, Lay Member Representative Mr C Myers, Commissioning Manager, NHS Scotland Prof J Neuberger, Associate Medical Director, ODT Mrs J Nuttall, Recipient Co-ordinator Lead, Wythenshawe Hospital, Manchester Dr J Parameshwar, Cardiologist, Papworth Hospital, Cambridge Mrs C Riotto, Recipient Co-ordinator, Papworth Hospital Dr J Smith, BSHI representative Mr R Venkateswaran, Surgeon, Wythenshawe Hospital, Manchester Mrs A Yates, Duty Office Services Manager Duty Office, ODT IN ATTENDANCE: Miss T Monday, Clinical & Support Services, ODT Miss E Wong, Statistics & Clinical Studies, NHSBT APOLOGIES: Prof D Collett, Associate Director of Statistics & Clinical Studies, NHSBT Mr A Hasan, Paediatric Surgeon, Freeman Hospital, Newcastle Dr E Jessop, Medical Adviser, NHS England Ms K Redmond, Surgeon, Mater Misericordiae University Hospital, Dublin (Observer) Dr J Townend, Cardiologist, Queen Elizabeth Hospital, Birmingham Dr M Winter, NHS National Services, Scotland 1 DECLARATIONS OF INTEREST IN RELATION TO THE AGENDA CTAG(14)H1 1.1 There were no declarations of interest. Admin Lead Trudy Monday 1

2 MINUTES OF THE MEETING HELD ON WEDNESDAY, 18 TH SEPTEMBER 2013 - CTAG H(M)(13)2 2.1 The minutes of the CTAG Heart meeting held on Wednesday, 18 th September 2013 were approved as an accurate record. 2.2 Action points CTAG H(AP)(14)1 Action point 2: Antibody incompatible transplants: Centre Representatives are sending retrospective data (recipient IDs and transplant date) to on all patients who underwent antibody incompatible transplants since April 2012. Centre representatives were reminded to continue to send data prospectively. Members were reminded that every transplant patient who has preformed antibodies should be followed up annually and data collected for a prospective audit. Action point 12: Protocol for DCD paediatric heart transplant: S Clark reported that a number of discussions have occurred and a protocol for paediatric DCD heart transplant is in place. One paediatric heart transplant had taken place at Newcastle and the protocol will continue to be used. Facility to enable the electronic transfer of echocardiograms performed by the retrieval team: N Al-Attar reported that some comments have been expressed by centres any further comments should be communicated directly to N Al-Attar. All other actions were either completed, in hand, or on the agenda. Heart Centre Reps Heart Centre Reps 2.3 There were no other matters arising. 3 HEART SELECTION AND ALLOCATION POLICIES CTAG (14)H2a and b A draft version of both the Heart Selection and Allocation Policies were circulated to members with the agenda. Comments should be emailed to by 12 th May 2014. The Selection policy will be used to audit all patient registrations onto the heart transplant waiting list. R Venkat and will work on a registration form based on the Selection policy. It is the responsibility of the centre to complete the form for all non-urgent patients being listed (an urgent form already exists). Those patients who do not meet the listing criteria should be sent to the CTAG chair and considered by the Adjudication Panel. Decisions made by the Adjudication Panel for urgent patients should be made within 24 hours; for non-urgent patients this timeframe should be longer (to be decided). All decisions will be logged and commonly approved indications for listing will be used to inform future developments/changes to the Selection policy. N Banner will convene a telecon to discuss comments received on the Selection and Allocation policies and the form. Once the policies are agreed by CTAG the documents will be submitted to the TPRC for approval, followed by legal advisors. The policies will be reviewed Admin Lead Trudy Monday 2 All R Venkat / N Banner

annually. The documents are a national resource and need to reflect practice and provide transparency. C Myers confirmed that the policies and Adjudication Panel will be supported in Scotland. Members are reminded that even after changes to policies are agreed, implementation of any change to current practice cannot occur immediately as IT support is required to action these. 4 GOVERNANCE ISSUES 4.1 Non-compliance with heart allocation There have been no recent incidents of non-compliance to report. 4.2 Heart incidents for review Prof Dark reminded members of the incident reporting system on the ODT website ideas for improvement are welcomed. Incidents reported are investigated by one of the four sub-groups: donation, retrieval, transplantation and Transplant Support Services (TSS); a minority of incidents (SUIs) are reported to the HTA. Feedback is given to the centre and reporter, and also the donation team manager if the incident relates to a donation issue. Of the total number of transplants in the last six months, one in ten resulted in an incident being reported; one in three for heart, one in two for lungs. The main issues reported are connected with people misunderstanding rules, poor communication and poor labelling. The CTAG Shared Issues meeting will review incident trend. J Neuberger stated that Cautionary Tales is available on the ODT website listed under Quick links to reference materials. It is a useful resource providing an insight into some of the clinical incidents reported to ODT. The aim is to share learning from incidents and so improve outcomes for patients. 4.3 Summary of CUSUM monitoring of 30 day outcomes following heart transplantation CTAG (14)H3 There have been no signals over the seven month period since the last CTAG meeting. 5 CTAG HEART ADVISORY GROUP WORK PLAN CTAG(14)H4 The CTAG Heart Advisory Group Work Plan was received and members were informed of the CTAG Allocation Zone Working Group meeting for the first time tomorrow (Wednesday 30 th April 2014), followed by two further telecons with the aim to finalise the document in June 2014. 6 UPDATE FROM HEART ALLOCATION WORKING GROUP ON CONGENITAL HEART DISEASES AND PATIENTS REQUIRING HEART LUNG TRANSPLANT CTAG(14)H5 This working group have been looking at the prioritisation of patients who are listed for heart lung transplant, and those patients with congenital heart disease. J Parmar and R Thompson were thanked for their work on this. N Banner reported on the discussions which highlighted the use of three organs per heart lung recipient with longterm outcome below that of heart transplant or lung transplant alone. An urgent allocation scheme for urgent heart lung transplant patients was Admin Lead Trudy Monday 3

discussed but there is limited evidence to support decision-making. G MacGowan will be asked to put together more objective criteria. N Banner to convene a telecon to discuss the likely demand for such a scheme and which centres should carry out these transplants. S Tsui highlighted the potential problem of surgeons maintaining their competency if there are so few heart lung transplants each year. This working group will continue with G MacGowan as Chair, and will feedback to CTAG. Once an agreement has been reached the selection and allocation policies will be updated to reflect this. 7 VAD FORUM UPDATE Refer to the VADs Forum minutes from the last meeting which was held on 18 th September 2013. The VADs Forum is convened by NHS England and will be held annually; the next meeting will be in September 2014. 8 URGENT HEART ALLOCATION SCHEME 8.1 Protocol for listing CTAG(14)H7 Members received a document setting out the process by which a patient should be registered onto the urgent heart allocation scheme (UHAS). This has been circulated to centre directors to confirm the definition of each category and also the other category. The process of registering under the other category was discussed at item 8.2 below. G MacGowan N Banner N Banner / G MacGowan 8.2 Validation rules CTAG(14)H8a and b A paper providing a list of proposed validation rules for the Duty Office to carry out before registering a patient on to the urgent heart allocation scheme (UHAS) was received by members. The agreed list will be incorporated into the selection policy. Implementation of validation will depend on IT progress. It was highlighted that for a patient that does not fulfil the agreed criteria for listing but is felt that the patient s condition merits access to the deceased donor pool, an application should be submitted to the CTAG UHAS Adjudication Panel via the CTAG Chair for consideration. The decision will be communicated to the requesting centre by the CTAG Chair. If the patient is accepted by the Adjudication Panel then the requesting centre has the responsibility to forward the approval to the Duty Office, copying in. to set up a unique email address for this process and will communicate to S Tsui for dissemination. The Duty Office will not register the patient until this email is received. N Banner requested that the milrinone specification in Category 5 states only that milrinone dose >0.375µg/kg/min and that an extra box is added to the urgent heart form to indicate whether adjusted to achieve therapeutic milrinone levels was the reason for listing. / S Tsui 8.3 Offering for larger paediatric recipients It was reported that if zonal centres do not accept a donor heart offer under the non-urgent offering sequence then it will automatically go to Great Ormond Street Hospital (GOSH). It was noted however that larger blood group O paediatric recipients on the GOSH list are Admin Lead Trudy Monday 4

potentially disadvantaged. and M Burch agreed to review / blood group O patients taller than 170cm on the waiting list at GOSH in M Burch the last year. Length of time on the list and outcomes will be investigated. 9 MONITORING REPORTS 9.1 Blood group activity CTAG(14)H9 Members received a paper reporting on access to adult non-urgent heart transplant by recipient blood group over the last two years. It was noted that there are more blood group A donor hearts than blood group B donor hearts. It was concluded that blood group O patients continue to wait longer than others for non-urgent heart transplant. J Parameshwar to lead on work with and N Banner to investigate the impact of applying the same blood group O rule to the urgent scheme in addition to the non-urgent scheme for the period from 1 st April to 30 th September 2013. ABO incompatible transplants should also be included. J Parameshwar / N Banner / 9.2 Great Ormond Street Hospital 20cm donor-recipient size match rule CTAG(14)H10 A paper analysing the impact of the 20cm donor-recipient size match rule and reviewing transplant activity at GOSH using adult donor hearts during 2013 was received by members. The rule will continue to be monitored annually. 10 NON-USE OF ORGANS 10.1 Utilisation of offered donor hearts CTAG(14)H11a and b J Dark reported on reasons for non-use of hearts during 2013. It was highlighted that very few hearts are lost due to damage, and the most common reason for turning down was function. J Dark will work with J Mascaro and R Venkateswaran to carry out a prospective review of a month s worth of data in order to identify if every useable donor heart is being used, and if there are justified reasons for those which are being turned down. J Dark / J Mascaro / R Venkateswaran 11 FOR INFORMATION ONLY 11.1 Prolonged heart registrations CTAG(14)H12 Members received a paper presenting the number of prolonged heart registrations and suspensions by centre at 2 nd January 2014 and 3 rd March 2014, respectively. Future versions of this paper will present results separately for patients with a VAD and without a VAD. 12 ANY OTHER BUSINESS Cardioplegia Solution (Plegivex): S Tsui reported on a problem regarding the supply of Plegivex, and centres received a proposal by email detailing a replacement called Cardioplegia Solution. Members agreed the replacement formula in principle, and that bicarbonate should not be included. S Tsui will draft some wording as an amendment to the NORS Standards to include this replacement formula. S Tsui Admin Lead Trudy Monday 5

Inappropriate offering: C Riotto reported that some hearts which are deemed unusable are then fast-tracked. S Tsui confirmed that when an organ is being declined it needs to be offered to two more centres first before offering ceases. J Dark agreed to look at J Dark incidences where inappropriate offering has happened. Paediatric heart offers: A Yates stated that the Duty Office will prioritise paediatric heart offers by date and time of registration only. Patient specific size criteria will not be considered going forward, and it will be up to centres to adhere to the 20cm rule. Agreement for funding when listing patients: Some of the patients referred from Wales need urgent listing and short term mechanical circulatory support (MCS). In some of these cases there have been problems with payment for the MCS as, it has been argued, that this had not been pre-agreed. Birmingham seeks the views of CTAG if this is correct behaviour when a patient is referred to a centre for urgent listing. N Banner suggested that preapproval with the referring centre should be sought. 13 Date of next meeting Tuesday 23 rd September 2014, The Friends House, Euston Road, London. Further details will be confirmed in due course. April 2014 Admin Lead Trudy Monday 6