NHS BLOOD AND TRANSPLANT ORGAN DONATION & TRANSPLANTATION DIRECTORATE

Transcription

1 NHS BLOOD AND TRANSPLANT ORGAN DONATION & TRANSPLANTATION DIRECTORATE MINUTES OF THE FIFTH MEETING OF THE KIDNEY PATIENTS SUPPORT GROUPS AND ODT, HELD ON TUESDAY, 8 JULY 2014 AT THE BIRMINGHAM & MIDLAND INSTITUTE, BIRMINGHAM B3 3BS PRESENT: Prof Chris Watson Mrs Denise Abbott Mr Michael Abbott Mrs Lisa Bradbury Ms Lisa Burnapp Dr Chris Burns-Cox Mr John Champion Mrs Jan Cooper Mr Nick Flint Mr Jim Higgins Mrs Marion Higgins Ms Nicki James Mr Sarbjit Johal Mr Kirit Modi Prof James Neuberger Ms Karolina Nikolaou Dr Rob Ryckborst Mr Timothy Statham OBE Mr Peter Storey Mr Paddy Tabor Chair of NHSBT Kidney Advisory Group (Chair) Gloucestershire KPA Gloucestershire KPA Statistics & Clinical Studies (NHSBT) Lead Nurse for Living Donation (NHSBT) Give a Kidney Six Counties Kidney Patient Association Kidney Research UK Trustee Queen Elizabeth Hospital KPA National Kidney Federation / Northampton KPA Northamptonshire KPA Kidney Research UK PKD Charity National Kidney Federation Associate Medical Director, ODT (NHSBT) Senior Marketing & Campaigns Officer (NHSBT) Kidney Patient Association West Midlands National Kidney Federation Kidney Research UK British Kidney Patient Association In Attendance: Mrs Lisa Drakett Clinical & Support Services, ODT (NHSBT) Apologies: Mr Mark Davis, National Kidney Federation, West Midlands Dr Helen Lewis, Independent researcher Ms Fiona Loud, British Kidney Patient Association Mr Ewen Maclean, Scottish Kidney Federation Ms Melanie Wager, Kidney Wales Foundation No feedback received from: British Renal Society Diabetes UK Northern Ireland KPA Royal Free KPA Kidney Cancer UK British Organ Donor Society South Asian Health Foundation Royal London Hospital KPA Swindon Kidney Patients Association

2 1 Welcome and Introduction Introductions were completed and C Watson welcomed everyone to the fifth meeting with national and local patients support groups in the UK. 2 Approval of minutes of previous meeting The previous minutes were agreed as a true and correct record. 2.1 Accuracy The previous minutes were agreed as a true and correct record. 2.2 Action Points 11.1 Unused DCD Kidneys resulting from recipients unfit for transplant and replacement recipients not found in time: Measures have now been put in place to reduce the rate of graft loss. NHSBT is planning to send out to each units on a monthly basis a list of all declined organs which have subsequently been used elsewhere. It is hoped the dissemination of this information will promote equity and reduce discard rates. These will continue to be monitored. It was acknowledged that variation in appetite for risk between and within centres exists and NHSBT are working with the clinicians to ensure equity. 3 Terms of Reference Election of a representative to act as a co-chair The revised Terms of Reference for the Kidney Patient Support Group were welcomed and approved. The group were asked to nominate a Co-Chair for future meetings for an initial 3 year tenure. J Higgins was proposed as Co-Chair and this was agreed by those in attendance. L Drakett will liaise with J Higgins to prepare for the next meeting with the contents and agenda. 4 Review of actions outstanding: 4.1 Progress achieved with a dual signature donor card and extent of proposed distribution in the UK K Nikolaou provided an update on the dual signature donor card and advised that NHSBT are in the process of reviewing donor cards with the aim to make them more widely available. An option being considered is using a digital emblem on a card which is kept in the wallet so people always have this on their person. K Nikolaou requested feedback. Concern was raised that the dual signature issue was raised 2 years ago and still has not been finalised. It was stressed that the main initiative of dual signature was to promote conversation between donor and family members. K Nikolaou will contact T Statham and K Modi to start engagement between the NHSBT Communications Team and the patients regarding the best way to move the donor card scheme forward. Funding for a national advertising campaign has been blocked by the Cabinet Office. Members of the group felt it may be advantageous for patients to attend local constituency clinics or write to Francis Maude MP to raise awareness of the potential rewards of an advertising campaign. K Nikolaou It was advised that Northern Ireland already have a dual card in place and it was suggested they were contacted to provide any helpful feedback that may be available.

3 J Neuberger advised that the Welsh legislation will be implemented from 1 st December ODR Quality management system at SNOD and RTC level Work is being undertaken to target those groups of people who become potential donors. Various approaches are being explored but it was stressed that NHSBT needs support from patients and a wider cohort. Clarification was sought regarding the SN-ODs receiving adequate training to deal with the impact of the Welsh legislation and the start date of the legislation. Post meeting note: K Nikolaou confirmed start date of Welsh legislation to be 1 st December O McGowan sent details of SN-OD training and timescales to Kirit Modi R Ryckborst raised awareness of moves in Brussels for donor consent to be governed by European legislation; therefore, if the wish of an individual is not acknowledged it would become a court case. This is already happening in the Netherlands. A request for more information regarding a recent situation in the Leicester centre was raised. J Neuberger reported that NHSBT was not asked to undertake the review (although both C Watson and J Neuberger were panel members). One of the highlighted areas was a difference in antibody listing criteria and Dr Sue Fuggle is reviewing antibodies specificities nationwide and with KAG will create a UK policy. The high number of young people who lose a graft through noncompliance or negligence (not illness) was brought to the attention of the group. C Watson advised that it is difficult to be sure that people have lost their graft due to not taking medication and stressed that this transition from paediatric to adult patient is a high risk area and support is needed for the patient at this difficult time. This was echoed by other attendees. 5 T2020 J Neuberger gave a presentation of the UK T2020 strategy. Information was provided regarding including an area of the microsite for patients which is being developed. J Neuberger advised the group that a survey will be sent out shortly to seek input from patients and other users as to the format and data provided. K Modi advised the NKF will publicise the survey nationally to request additional feedback. A question was raised regarding whether dialysis remains a commissioned service following a review currently taking place and it was suggested NHSBT should make a submission to this review. There was a full discussion about the impact of increased kidney transplant activity and the falling numbers of patients on the kidney transplant list and on the funding and provision of renal dialysis units. J Neuberger advised that ODT has a regular meeting with James Palmer (NHS England) and advised he will take this forward with him and ensure the comments from the group are passed on. J Neuberger The issue of surgical capacity is a real concern and this has been taken to NHS England and other commissioners. James Palmer has given J Neuberger

4 assurance that this is being addressed. J Neuberger has requested for this to be put in writing but has not yet received any written confirmation. K Modi agreed to also raise this issue in writing from the Kidney Patient Support Group. It was stressed that if members of the group have concerns / experience of capacity issues it would be very helpful if they expressed these in writing to James Palmer as there are currently not many concrete examples regarding denial to a transplant due to capacity issues. K Modi 6 Latest Statistics relating to Organ Donation and Transplantation L Bradbury presented the latest statistics relating to Organ Donation and Transplantation to the group. A discussion followed regarding the variation shown between centres. C Watson explained that as transplanted kidneys are second-hand they come with a variety of conditions which the surgeon at the individual centre decides whether they can accept. NHSBT currently work with centres with a high decline rate and decline data is produced to open up discussion as to why the variance exists and promote best practice. It was noted that patients listed pre-dialysis on the deceased donor list that result in a live donor transplant are excluded from the data. C Watson and L Bradbury will look at including data relating to patients from satellite dialysis units to see if that could be included in the report, although the data are not collected by NHSBT but by the renal registry. C Watson / L Bradbury L Bradbury advised that reporting standard and extended criteria for DCD will begin once the allocation scheme is up and running. Work is ongoing with centres to try and bring offer decline rates in line with the national average. It was noted that the published figures need to be interpreted carefully. L Bradbury informed the group that the data will be supported by a synopsis for each report. The data are being published to promote questions of the transplant centre and inform patient choices. J Neuberger agreed that the promotion for the new data being published in August was important but advised NHSBT would initially focus on getting the reports out and then look at best ways of making them more widely available after. 7 Issues raised by members 7.1 Transplant waiting list criteria centre variance (see item 6) Item covered in item Improvement in BAME Communities donation rates K Nikolaou presented the Improvement in BAME Communities donation rates to the group. K Modi raised concern regarding the low numbers of BAME transplants that take place and stressed that although campaigns are positive, consent rates and transplants need to increase. The one-off events were acknowledged but K Modi believed that more intensive work needs to be carried out. Areas he suggested looking at are: Possible engagement with KAG Looking at BAME patient survival rates Number of pre-emptive transplants in BAME

5 BAME consent rates It was advised that the Marketing and Communications Department had made a start but J Neuberger stressed that this was an issue that needs a central government approach and should be addressed at a national level. L Bradbury agreed to look into providing some data specific to BAME. L Bradbury 7.3 New Scientist article on new type of drugs In response to a pre-meeting request C Watson advised the group on a new approach to drugs being used when transplanting organs which was covered in an article published in the New Scientist magazine on 2 nd April 2014 reporting research by Allan Kirk in the USA. C Watson informed the group that as the government is encouraging generic medication, the drug companies are leaving the transplant area so are not investing in new immunosuppressive drugs. One of the drugs discussed in the article, Belatacept, currently costs approximately 10,000 per patient per year whereas the cost of conventional treatment is 2 3,000 per year. The other drug discussed, Alemtuzumab, was primarily marketed for Leukaemia but is very good for Multiple Sclerosis and as a result it has been withdrawn from the market, relaunched and rebranded under another name targeted at Multiple Sclerosis at a much inflated cost. C Watson advised that the company, Genzyme, have guaranteed to supply alemtuzumab on a name patient basis for transplantation for the foreseeable future, but no firmer commitment could be extracted. 8 Review of current selection and allocation policies L Bradbury presented the review of current selection and allocation policies and it was noted that DCD transplants are now becoming more common. 9 Update on DCD Allocation L Bradbury presented an update on DCD Allocation. 10 Review of developments in policies The update in DCD allocation scheme was covered in item 6. C Watson informed the group of the main outcomes from the Renal Transplant Services Meeting (RTSM) held in January 2014 which will be taken forward by KAG: DCD National Allocation scheme, to be introduced later this summer To develop decision support to help clinicians and patients to be fully informed of risks and benefits. Lorna Marson is heading a working group to improve the information available and the way it is presented. To improve the process for older deceased donor allocation. Chris Callaghan is heading a working group to decide which kidneys would be suitable for dual transplantation as opposed to singly. Sue Fuggle is leading a working group to look at how antibodies are listed nationwide and will then create a policy for all centres to adopt.

6 The project that L Marson is working on is in very early stages and C Watson will ask L Marson to contact the patient support group to provide patient input. C Watson 11 Living Donation LDKT 2020 L Burnapp presented the Living Donation LDKT 2020 to the group. L Burnapp explained that the strategy was prompted by a slight down turn in figures in L Burnapp advised the group of the growing number of altruistic donors and noted that there were 107 altruistic donors in The importance of living donation was highlighted as approximately one third of the transplants taking place per year are from living donors and K Modi stressed the significance of the living donor aspect. A discussion followed regarding the resources NHSBT provide to deceased donor compared to live and it was suggested that equal importance should be placed on deceased and living donation. J Neuberger advised the group that NHSBT responsibility and funding is currently with deceased donors but NHSBT works to support living as well as deceased donation. 12 What would the Kidney Patient Support Group like KAG to do? C Watson asked the group what areas they would like the Kidney Advisory Group to look at; the following ideas were put forward: Living donation: provide more centre identifiable information Sharing of patient data and hospital data Decision support - how a patient can be given information regarding a less than perfect kidney Transition period for young ones so they are helped to become compliant Continue to try and encourage TV to cover transplant story lines as this does promote discussion C Watson advised the above points would be raised at KAG and feedback would be provided. C Watson 13 Any other business Jan Cooper informed the group of a book called Staying Alive which was written by herself and her husband and includes stories about survivors and real life experiences as well as fictional stories relating to kidney patients. All proceeds raised from the book will go to Kidney Research UK. The cost of the book is 1.44 for the electronic version or 5.95 for the paperback version. Please see links provided below: ebook: Printed book: r&categoryld= R Ryckborst advised J Neuberger that Brussels currently has funding available which could be applied for use with Living Donation. J Neuberger will look into this. J Neuberger

7 14 Date of next meeting To be arranged. L Drakett will liaise with J Higgins to confirm dates and look at the possibility of holding a teleconference before the next annual meeting. L Drakett / J Higgins