Donation and transplantation plan for Scotland 2013-2020

Priority 3: Making every donation count

Introduction

5.1 It is important that once an individual has taken the step of signing up to the NHS Organ Donor Register (or otherwise making their wish to donate known) the NHS does all that it can to ensure that such a wish is fulfilled; that as many organs as possible can be donated; and that those organs are in the best possible condition for transplantation. Every donation should count.

5.2 We know that current practices may not be optimising the number of organs that can be donated, nor ensuring that donated organs are in the best possible condition. This is a complex area, relating to how different clinical specialities within the NHS interact with each other, and involving the time and commitment of professionals who may not frequently have to deal with donation. If we are to ensure that every donation counts current shortcomings must be tackled.

5.3 We also know that organs that are donated may not be successfully placed and that there is variation in the willingness of transplant centres to accept organs, with some centres taking a more risk-averse approach in certain circumstances.

5.4 Many of these issues can only be successfully addressed and performance improved through good quality data monitoring. NHSBT captures a range of data on these issues which can be used to identify reasons for donations not proceeding.

Where are we?

5.5 While Scotland currently performs well in terms of progressing donation (with an average time of 10.5 hours for the DBD donation process and an average time of 8.7 hours for the DCD donation process), we continue to see families retracting their authorisation due to the length of the donation process. In 2012/13, 70 Scottish families declined organ donation. Amongst these families the most prevalent reason for declining (21 families) was the estimated length of donation process. (Of the 21 patients, six had joined the NHS Organ Donor Register in life). In addition, two families who initially authorised donation changed their mind and retracted authorisation once the donation process was underway due to the length of that process.

5.6 NHSBT currently manages the UK-wide potential donor audit (PDA), a system to capture a range of information around potential donors, their management, and outcomes in each case. The PDA has the potential to be a very strong tool to aid both the current process of donation, and to drive future developments by providing accurate data on donation activity. There are however a number of limitations with the PDA as it currently operates, giving rise to inaccuracies and insufficiently robust data in the potential DCD group.

5.7 NHSBT has committed to reviewing the PDA, but this work has stalled or slowed as a result of other pressures. The Scottish Transplant Group has previously expressed concern at the lack of progress with the review of the PDA and the Scottish Intensive Care Society (SICS) wrote to NHSBT in December 2012 to set out its concerns at the lack of progress with the review, and to urge NHSBT to prioritise this work.

Key actions

5.8 Given the UK-wide co-ordination of activity around the process of retrieving and offering organs for transplantation, Scotland needs to work in close partnership with NHSBT and the other UK Departments on this issue. The Scottish Transplant Group will support delivery of the relevant priority actions set out in the NHSBT UK Strategy.

5.9 In order to streamline the process of offering of organs, and in order to reduce the amount of time that families need to wait for the donation process to complete, there is an urgent need for a simultaneous electronic offering system to streamline offering. This has the capacity to quicken the process significantly - US colleagues have reported that a similar mechanism, introduced five years ago, 'transformed life' for them. The Scottish Transplant Group and Scottish Government should work with NHSBT and the other UK Departments to encourage development and introduction of a system of simultaneous electronic offering. (Recommendation 11)

5.10 The North East NHSBT Region (covering the north east of England) currently operates a system whereby transplant clinicians respond rapidly to SNODs who triage the initial referral of donors from the regional Critical Care and ED Departments. Experience in Newcastle suggests that limiting calls to local transplant centres streamlines the process significantly. The speed of response results in increased referrals and ultimately an increased number of donors. The Scottish Transplant Group should review the experience from the North East Region, and consider rolling out a similar system within Scotland, to streamline the donation process. (Recommendation 12)

5.11 The current system of organ donation and transplantation can only be effectively and robustly evaluated, and areas for improvement identified, if good quality data is available. The Scottish Transplant Group supports the position of the Scottish Intensive Care Society that NHSBT should prioritise the review of the PDA. The Scottish Government and the Scottish Transplant Group should work with NHSBT to ensure that review of the Potential Donor Audit (PDA) is prioritised, and should continue to support the Scottish Intensive Care Society and College of Emergency Medicine representation on the NHSBT Potential Donor Audit sub-group. (Recommendation 13)

5.12 An ongoing follow-up service for donor families is provided by the Specialist Nurse team and, where it is required, this includes an evaluation of the service, annual letters, remembrance services and other activities. Continuing engagement with donor families after the donation has taken place is an important part of the SNODs duties. Such families also can contribute significantly, if they wish to do so, to public understanding of the impact of donation of bereaved families. The Scottish Government and the Scottish Transplant Group should work with NHSBT and others to provide a national gathering on alternate years to support donor families. (Recommendation 14)

5.13 Another facet of making every donation count is ensuring that the transplants that take place are as successful as possible. Good after-care is key to ensuring successful patient outcomes. With the number of transplant operations increasing, and better survival rates, the number of patients requiring post-transplant care is growing rapidly. Transplant recipients in Scotland should already be receiving optimal post-transplant care, but the Scottish Transplant Group should continue to monitor after-care requirements across Scotland, as well as relevant developments in evidence and research, to ensure transplant recipients receive the support that they need. Consideration should be given to working with primary care and other parts of the NHS to raise awareness on longer-term post-transplant management. (Recommendation 15)