Donation and transplantation plan for Scotland 2013-2020

Priority 4: Ensuring all parts of NHSScotland are knowledgeable about and support donation and transplantation

Introduction

6.1 As stated elsewhere, organ donation and transplantation are complex and multi-faceted issues and give rise to serious ethical and legal considerations. It is vital that the general public - whether wishing to be a donor or not - are reassured that appropriate safeguards are in place to ensure the wishes of individuals will be respected. Likewise, professionals need to have a legal and ethical framework upon which they can base the decisions they take in what may often be very difficult circumstances.

6.2 As well as having the appropriate frameworks in place there is a role for the NHS as a whole to champion and support donation and transplantation. Given the significant benefit to individuals and the NHS as a whole, that transplantation can bring, such support should be readily forthcoming. However, the reality is that for many professionals donation events are rare in a career. Many professionals will never be involved with patients who may benefit from transplantation and this whole area of work may be seen as peripheral. It is the role of government, NHSBT and the donation and transplant community to provide the information and education to challenge these perceptions. It the responsibility of NHS managers to champion and support donation and transplantation locally. Lessons from other parts of the world show that to increase donation rates the whole health system, and all parts of individual hospitals, should be knowledgeable about and embrace and support donation and transplantation. This is known as the 'whole hospital' approach.

6.3 Organ donation and transplantation in Scotland is underpinned by the Human Tissue (Scotland) Act 2006. This legislation sets out the basis upon which individuals can authorise that their organs can be donated and used for transplantation after death, as well as a range of provisions relating to other aspects of donation and transplantation.

6.4 Other legislation is also relevant to donation - particularly the Adults with Incapacity (Scotland) Act 2000. This Act sets out provisions in relation to individuals who have lost capacity for any reason. Such loss of capacity might relate to accidents or serious injuries that leave an individual in circumstances where further treatment, both family and clinicians agree, would be futile. Their death, following the withdrawal of life-sustaining treatment, is inevitable. However, until death has actually been pronounced, the provisions of the Adults with Incapacity (Scotland) Act 2000 apply. The provisions of the Human Tissue (Scotland) Act 2006, apply only after death.

6.5 The UK Donation Ethics Committee and the Scottish Ethics Group (a sub-group of the Scottish Transplant Group) routinely consider legal and ethical issues that arise in relation to transplantation, and both groups make recommendations or provide advice to the UK or Scottish transplant communities as required.

Where are we?

6.6 The legal and ethical framework which underpins organ donation and transplantation in Scotland appears to be generally robust. There are however specific areas where further work may be useful to remove ambiguity. In particular, given the growth in DCD donation, there are issues relating to more invasive procedures which can be undertaken to support DCD, and how these relate to the interplay between the Adults With Incapacity (Scotland) Act, and the Human Tissue (Scotland) Act. Scotland's Chief Medical Officer provided some initial clarification on these issues in a letter to the service in 2010^[5] (further clarified in a follow-up letter in 2012^[6]), but the letter did not go as far as to provide a general solution. There are complex legal and ethical issues involved that would require full public consultation before any clarification to guidance or amendment to law can be made.

6.7 Following the Organ Donation Task Force, a number of significant changes were made to improve the donation and transplantation infrastructure in Scotland, including:

• establishment of a donation committee in each mainland NHS Board with links to the Island Boards;
• establishment of a Clinical Donation Champion (now referred to as Clinical Leads for Organ Donation) in each of the donating hospitals in Scotland; and
• strengthening the network of donor transplant co-ordinators (now referred to as Specialist Nurses for Organ Donation), by appointing seven additional
  co-ordinators.

6.8 In spite of these infrastructure developments it is still clear that more can be done. The wide variation in donation rates across NHS Boards in Scotland (see chart 1 in the Introduction to this Plan) is evidence of that. We also know that there is more work to be done locally to ensure all parts of the NHS fully embrace donation and transplantation.

Key actions

6.9 The increasing contribution that DCD programmes now make to organ donor numbers has highlighted the need for further clarification about the nature of the interventions relating to organ donation that can properly be undertaken as part of those programmes. Although initial clarification was offered in advice from the CMO in 2010 and 2012, clinicians require specific and standardised advice. The Scottish Government, working with the Scottish Transplant Group, should undertake to develop such advice for clinicians, and address any legal issues there may be. A full public consultation should be undertaken prior to any advice being issued, or prior to any legislative change. (Recommendation 16)

6.10 Although a lot of work has been done to develop the donation and transplantation infrastructure as a result of the ODTF, there is evidence that more work is needed. Organ donation should be embraced as core business for all parts of the NHS, and this can only succeed through the efforts of local managers, clinicians and nursing staff. The Scottish Government and the Scottish Transplant Group should review local Organ Donation Committees and the work of Clinical Leads for Organ Donation, to determine whether or not the current infrastructure is effective, and to determine which approaches can best embed organ donation as core business for all. (Recommendation 17)

6.11 It is important that the success of the NHS in Scotland in increasing rates of donation and numbers of transplants is recognised. Equally it is important that we are open about the areas of challenge, to ensure we target effort and resource where it can have the biggest benefit. The Scottish Government should publish an annual report card on four or five key national measures on organ donation. (Recommendation 18) Such a report card will ensure that clear information is available on the performance of NHS Boards in Scotland, but will also serve to increase awareness amongst the public and professionals in relation to organ donation and transplantation.

6.12 The 'whole hospital' approach, which has been successful in other countries, may be a useful approach in Scotland. The Scottish Government, working with the Scottish Transplant Group, should seek to pilot in one hospital a 'whole hospital' approach to organ and tissue donation. That pilot should be fully evaluated and all lessons learned. (Recommendation 19)