Donation and transplantation plan for Scotland 2013-2020

Introduction and Background

Where we are

1.1 The transplantation of organs is one of medicine's great success stories. Conditions that severely limit lives, or which are ultimately fatal, can now be cured or significantly improved by the transplantation of replacement organs from deceased and living donors. These procedures save and improve lives beyond measure. Yet despite the very real benefits of transplantation - both for the individual concerned and for the NHS as a whole - there are still too few organs available, and too few transplants carried out. Patients continue to die while waiting for the transplant which could transform their lives.

1.2 It has been recognised for some time that Scotland - and the UK more generally - compares poorly in terms of deceased donation rates with other countries in Europe. In order to address this, a UK Organ Donation Taskforce (ODTF) was established in 2006 to look at the obstacles to organ donation and to suggest solutions which would deliver an increase in transplants. The ODTF published its report in 2008, making 14 recommendations which it believed could lead to a 50% increase in organ donation within five years.

1.3 Like the other UK countries, Scotland has worked hard to deliver the ODTF recommendations and significant progress has been made:

• 2012/13 saw the highest ever number (94) of deceased organ donors in Scotland - an increase of 74% from since 2007/08.
• Scotland now has the UK's highest percentage of residents signed up to the NHS Organ Donor Register - over 41% of the population had joined the register at the end of 2012/13, compared to the UK average of 31%.
• 2012/13 saw the highest ever number (285) of transplant operations from deceased donors undertaken on Scottish recipients - an increase of almost 36% from around 210 operations in 2007/08.

Full details of Scotland's progress against the ODTF recommendations are set out in Annex B.

1.4 Despite these achievements, there are still many areas where further work is needed, and improvements can be made. For example:

• We know that many people who are supportive of organ donation have not yet signed up to the NHS Organ Donor Register. Enabling and encouraging those people to sign up to the Register and to make their loved ones aware of their wishes is a key priority. A survey undertaken in early 2012 by the Scottish Government demonstrated that only 5% of the population oppose organ donation in principle.
• We know there are circumstances where opportunities for donation are missed due to failures by the NHS to refer potential donors to Specialist Nurses in Organ Donation. This is true even in circumstances where the deceased has a recorded wish to donate (for example, by being on the Register, carrying a donor card or by telling their loved ones of their wishes).
• We know that in some cases, the families of individuals who have expressed a wish to donate do not receive timely information or support from the specialist staff trained in the donation process.
• We know that there is a wide variation in donation rates across the NHS in Scotland. While some variation should be expected with small numbers, this may not fully explain the extent of variation seen (see chart 1 below).

Chart 1: Organ donation numbers and rates per million population (pmp) in Scottish NHS Boards 2012/13

Note: NHS Boards with no donors in 2012/13 are not shown.

1.5 We want Scotland to be amongst the best performing countries in the world for donation and transplantation. This plan sets out the priority areas of work that need to be tackled over the period to 2020 to enable us to reach this goal. If the following recommendations are implemented, we believe that by 2020, donation, transplantation and family refusal rates in Scotland should be on par with the best performing countries in the world.

By 2020, in Scotland:

• overall deceased donation rates will increase from 17.9 per million population in 2012/13 to 26 per million population.
• overall transplantation rates in Scotland from deceased donors will increase from 65.8 to 74 per million population.
• family authorisation rates in donation after circulatory death (DCD) will increase from around 50% to around 80%.
• family authorisation rates in donation after brainstem death (DBD) will increase from around 78% to around 85%.

The Scottish Transplant Group

1.6 The Scottish Transplant Group (STG) was established in 2001 on the back of the Acute Services Review and was tasked with developing the first Organ Donation Strategy for Scotland (published June 2002^[1]). Since that time the STG has continued to meet quarterly and provides advice to Scottish Ministers on all issues relating to organ donation, transplantation and tissue donation including implementation of the ODTF Recommendations.

1.7 As the key body providing advice to Ministers, the STG was asked to develop a plan to follow the ODTF Recommendations. The Group has had a key role in identifying the priorities for action, and in shaping these into a series of meaningful recommendations. In their work, the STG has had cognisance of the work being undertaken at a UK level on the UK-wide Strategy (see paragraph 1.14 below).

1.8 The STG will have an ongoing role under this new plan. The Group will be expected to monitor progress against the recommendations made - both in this plan and in the UK-wide Strategy - and report to Ministers on an annual basis.

The UK and European context

1.9 Organ donation and transplantation has always been delivered on a collaborative basis across the UK. It is in the best interests of patients to ensure that organs have the best match to recipients as this maximises the potential for good clinical outcomes and reduces the risk of graft failure or the need for re-transplantation. Ensuring the closest match between organ and recipient can be best achieved by sharing organs and expertise across the UK. This approach also means that patients in Scotland have access to rare or specialised procedures that are not available in Scotland.

1.10 Although the constitution of the UK may change in the coming years in light of the referendum on Scottish independence, organ donation and transplantation should continue to work on a collaborative basis to ensure the best outcomes for all patients in all parts of the country. This mirrors the experience in other parts of Europe where groups of countries work collaboratively to achieve the best outcomes for their patients. (For example, Scandiatransplant and Eurotransplant.) This plan is predicated on the basis that - whatever the constitutional developments - the existing collaborative approach will continue.

1.11 Organ donation and transplantation activity across the UK is co-ordinated by NHS Blood and Transplant, an England and Wales Special Health Authority which operates in Scotland under a contractual arrangement with the Scottish Government. NHSBT manages certain necessary activities such as the UK-wide NHS Organ Donor Register; the allocation of organs across the UK; management of data and information; and the training and management of specialist nurses and clinical leads. Scotland will continue to engage with NHSBT and the other UK Health Departments to ensure patients in Scotland have the best clinical outcomes. The nature of that relationship may change in light of the changing constitutional situation, or for other reasons, but the need for collaboration will not reduce.

1.12 Organ donation and transplantation also operates within a robust European and domestic regulatory framework. For Scotland, as with the rest of the UK, the Human Tissue Authority (HTA) is the regulatory body. The Scottish Transplant Group and donation and transplant services in Scotland work closely with the HTA to ensure services meet the necessary regulatory standards.

1.13 Tissue donation in Scotland is managed by the Scottish National Blood Transfusion Service (SNBTS). This has resulted in close collaboration between organ and tissue donation which in turn has resulted in common education programmes, documentation and sharing of organs, i.e. hearts which cannot be placed are retrieved and valves are retrieved from them.

The NHSBT Strategy

1.14 The development of a new UK-wide Strategy on organ donation and transplantation has been co-ordinated by NHSBT on behalf of the four UK Health Departments. The UK Strategy is available on the NHSBT website at www.nhsbt.nhs.uk/to2020. This Strategy is the first document since the report of the UK Organ Donation Task Force to set out the key areas where further activity is required across the UK as a whole.

1.15 This Scottish plan is very much in line with, and intended to complement, the UK Strategy document. Where the UK document sets out general principles and considers those elements of organ donation and transplantation which are managed or can best be addressed across the UK as a whole, the Scottish plan focuses specifically on the devolved health infrastructure in Scotland and those activities which may be unique to Scotland, or delivered differently. The two documents are inter-related and inter-dependent.