Donation and transplantation plan for Scotland 2013-2020

Priority 2: Increasing the availability of organs

Introduction

4.1 The ultimate aim of this plan is to ensure that as many Scots as possible can receive the life-saving or life-changing transplants they need. The most significant limiting factor to the ability to undertake transplants is the availability of organs. The numbers of people who have expressed a wish to donate, or who have signed up to the NHS Organ Donor Register is only of value if the NHS has the right systems in place to ensure that organs can be donated by those who wish to in appropriate circumstances.

4.2 Currently, organs for transplantation can be made available in the following ways:

• Through deceased donation, or donation after death, specifically:
  • Donation after brain stem death (DBD), from individuals who generally have been pronounced dead in an Intensive Care Unit (ICU) using the neurological criteria known as 'brain stem death testing' using the Code of Practice for the Diagnosis and Confirmation of Death published in 2008 by the Academy of Medical Royal Colleges^[2].
  • Donation after circulatory death (DCD), from individuals who generally die in critical care and emergency medicine areas as a result of heart or circulatory failure and who are pronounced dead following observation of cessation of heart and respiratory activity.
• Through living donation, in the case of kidneys or liver.

4.3 DBD was traditionally the main source for most transplanted organs, but in the last five years DCD donation has increased, and has, in fact, been the main driver for increasing donation rates across the UK, and in Scotland especially, although Scotland has so far maintained its rate of DBD donation unlike other parts of the UK. DCD donation gives rise to specific issues, not least the fact that hearts cannot currently be donated by DCD donors, however, that may change in the future. Living donation has also increased in recent years and is an important area for development.

4.4 A very recent development in Scotland relates to the pilot of DCD Category II^[3] donation in NHS Lothian. This pilot commenced in early 2013 and seeks to enable those people who suffer a witnessed cardiac arrest, and who are already on the NHS Organ Donor Register (or have self authorised by carrying a donor card or making their wishes known to their loved ones), to become donors in circumstances where all efforts to resuscitate and revive prove futile. Currently, individuals who die in such circumstances would not be able to donate organs. Such schemes operate in other parts of the world and the NHS Lothian pilot - currently the only one in the UK - is attempting to evaluate the potential impact of such an approach for Scotland. Tissue co-ordinators and specialist nurses for organ donation are working collaboratively on this pilot with mutual benefit to both tissue and organ donation.

4.5 For all forms of deceased donation, in order for donations to proceed, potential donors need to be referred to Specialist Nurses for Organ Donation (SNODs) in a timely way, either:

• for DBD, prior to testing, when the decision to test for death using neurological criteria is made and documented; or
• for DCD, when the decision that continuing treatment is not in the patient's overall best interests is made and documented.

If referral to the SNODs does not happen in good time then the opportunity to donate can be lost.

4.6 Part of the role of the SNOD is to check the individual's wishes (by checking the NHS Organ Donor Register) and to speak to the family. The SNOD has a key role in ensuring that the family or next-of-kin feel able to support donation where the deceased had made known a wish to donate, or can take an informed view in instances where the deceased had not made their wishes known. Even though the law in Scotland allows donation to proceed in the absence of family authorisation, in practice, donation would not currently proceed without this support. At all times SNODs are devoted to the care and ongoing support of the potential donor's family, often many years into the future, providing families with regular updates, and including them in remembrance services.

4.7 The SNOD also has a key role in discussing with Procurators Fiscal the potential for donation in circumstances where a criminal prosecution or police investigation into the cause of death may be necessary. Procurators Fiscal (PF) can refuse to allow donation to proceed, or can apply conditions, such as that only abdominal organs may be donated. An agreement exists between the Scottish Transplant Group and COPFS/Scottish Fatalities Investigation Unit covering procedures around organ donation. This has recently been updated and plays a key role in fostering good relations and minimising the number of cases where a Fiscal refuses to allow donation to proceed.

Where are we?

4.8 Historically, Scotland and the UK have not compared well to the best performing countries in terms of rates of deceased donations. Significant progress has been made in recent years, however, and the picture has changed somewhat, specifically:

• The UK now achieves 19.1 donations per million population, and Scotland 17.9 (2012/13);
• This compares with the best performing countries, such as Spain (35.3 donors pmp) and Croatia (33.6 donors pmp);
• However, the UK and Scotland do perform very well in terms of DCD donation, with higher rates of this sort of donation than many other countries;
• The UK and Scotland also have some of the highest rates in the world of live donation.

4.9 We know that potential donors are missed as a result of a lack of referral to SNODs. The SNODs are responsible for instigating the NHS Organ Donor Register checks, the authorisation processes and for commencing a comprehensive assessment of the donor. From Scottish held data, we know that in 2012/13, a total of 10 likely brain dead patients and 20 patients having life-sustaining treatment withdrawn, who may have become donors, were neither notified nor referred to the SNOD service for assessment. Several of those patients had in life expressed a wish to donate. This is a failure of the NHS to support the wishes of the deceased. Each potential donor missed can equate to as many as seven transplant operations.

4.10 We know that good progress has been made in Scotland towards reducing the rate of family refusals to donation, particularly in the case of DBD donation, where family refusal rates are in line with the best performing countries at around 20-25%. Refusal rates are however higher in DCD donation cases, for a variety of reasons. We also know that family refusal rates are far lower when discussions with families about donation are planned, with both the SNOD and the referring clinician approaching the family together. SNODs have the ability to sit with families for several hours if necessary, providing detailed information and answering questions. The family refusal rate for tissue donation is high (circa 65%) and further work is required to understand the reasons behind this and the factors that may be tackled to reduce this figure.

4.11 PF refusal rates can vary from year to year, and that can be because PFs move posts relatively frequently and may only rarely have to take a view on potential donation, but a lot of work has been done recently to provide information and advice to PFs to minimise the number of refusals.

4.12 Rates of living donation in Scotland have been steady in recent years, with between 50 and 60 living kidney donors every year, and very small numbers of living liver donation. NHSBT recently published a UK-wide Living Donation Strategy which makes a number of recommendations relevant to Scotland.

Key actions

4.13 It is important that the rate of donation in Scotland continues to increase, and the Scottish Government would like donation rates in Scotland to reach those of the best performing countries. In order to achieve this, it is essential that all potential donors are referred to SNODs for assessment. Any failure to refer a potential donor to SNODs for assessment is unacceptable, and this is particularly true in the case of individuals who are already on the NHS Donor Register. The Scottish Transplant Group should work with NHS Boards to develop tangible approaches to minimising and eliminating missed referrals, working in partnership with Scottish Government, NHSBT and others. (Recommendation 4a)

4.14 The Scottish Government should publish data on an annual basis detailing the number and type (DBD and DCD) of potential referrals that have been missed and in which NHS Board areas, to support NHS Boards in identifying and rectifying potential barriers to referral. Such data, which could also include tissue donation data should be published in the annual donation report card (see Recommendation 18 below). (Recommendation 4b)

4.15 The other main limitation on the availability of organs is the rate of family refusals and the impact of PF refusals to donation. NHS Boards and clinicians should ensure that all discussions with family members about the potential for donation involves a SNOD. The Scottish Transplant Group should monitor data on the rate of family refusals and report annually to Scottish Ministers. (Recommendation 5)

4.16 The Scottish Transplant Group should continue to work closely with the Crown Office and the Scottish Fatalities Investigation Unit (SFIU) to ensure that Fiscals have the information they need to make informed decisions about donation. Such work should involve annual training days involving the criminal justice and transplant communities. (Recommendation 6)

4.17 The DCD Category II pilot in NHS Lothian is an important piece of work, and reflects the NHS in Scotland's desire to try new approaches to increase the number of donations that take place. The Scottish Transplant Group and Scottish Government should continue to support the DCD category II pilot in Edinburgh. That pilot should be fully evaluated and lessons learned and disseminated across the UK. If the pilot is successful consideration should be given to operating similar schemes in other parts of Scotland - although such schemes may only be viable in Edinburgh and Glasgow, where there is rapid access to large emergency departments and a local organ retrieval team. (Recommendation 7)

4.18 Living donation continues to be an important source of a significant number of kidneys. The Scottish Transplant Group should consider the NHSBT Living Donation Strategy and take forward recommendations as appropriate. The Scottish Government should ask National Service Division of NSS to look at the potential risks and benefits of moving to national commissioning of kidney transplantation in Scotland. (Recommendation 8)

4.19 In order to ensure that living donors are not disadvantaged as a result of their donation, Scottish guidance exists on reimbursement of expenses^[4]. However, that guidance - in a letter from the Scottish Government Health Department from 2004 - predates the Human Tissue (Scotland) Act 2006 and would benefit from a review and update to ensure that it is fit for purpose. The Scottish Government should undertake to review and update HDL2004/51, working with HM Revenue and Customs and NHSBT as necessary. (Recommendation 9)

4.20 It is important that everybody in Scotland who wishes to donate their organs or tissues after their death has every opportunity to do so. Individuals who live in remote or rural locations, or on any of the Scottish islands, can be disadvantaged at present due to the lack of access to the specialist intensive care facilities which are required to enable donation to proceed. Donation should be a core activity for all parts of the NHS. Accordingly, the Scottish Government and the Scottish Transplant Group should look at options to ensure that individuals who live in remote parts of Scotland are able to donate if they wish to do so. Consideration should be given to transportation arrangements to enable potential donors to be moved to hospitals which can facilitate donation if necessary and appropriate. (Recommendation 10)