Donation and transplantation plan for Scotland 2013-2020

Priority 5: Ensuring the public in Scotland is informed and engaged about donation and transplantation

Introduction

7.1 Organ donation and transplantation are issues of significant public, political and media interest. It is vital that the public in Scotland feels informed and engaged about all aspects of organ donation and transplantation. It is important that all parts of society have the opportunity to engage with any debate on policy.

7.2 It is also important that the generosity of donors both deceased and living, continues to be recognised and commemorated by government and society.

Where are we?

7.3 As detailed elsewhere, the Scottish Government has delivered national awareness-raising campaigns on an annual basis over the recent past. The Scottish Government has also established a Scottish specific website to support these campaigns, and has produced a schools information pack which has been well reviewed. It also produced an information leaflet to help people understand what they need to do if they want to donate their organs or tissue after they die. 750,000 copies of this were circulated to GP surgeries, community pharmacies and public libraries across Scotland. This material is in addition to the very good material available from NHSBT and other sources. Therefore, many sources of information are available for those interested in learning more about organ donation and transplantation. The Scottish Government campaign and the other sources of information will have contributed to the increase in the number of people signing up to the NHS Organ Donor Register in Scotland.

7.4 It is, however, important that the public and professionals are not simply passive recipients of information about organ donation - they should have an opportunity to provide views and shape policy and NHS practice. The Scottish Transplant Group includes representatives from donor families and transplant recipients, and the Scottish Government has regular engagement with the Scottish Patients Association on donation and transplantation issues. However, there has been no general public consultation on issues within this sphere since the passage of the Human Tissue (Scotland) Act 2006 more than seven years ago. There are important changes to policy or practice which could be introduced and which may have a beneficial impact on donation numbers in Scotland, but the Scottish public has not had the opportunity to provide a view on such approaches.

7.5 A permanent memorial to Scottish organ donors currently exists - the Loveseat in Kelvingrove Museum and Art Gallery in Glasgow. The memorial was originally developed by the West of Scotland Transplant Co-ordinators and funded by Kidney Research UK. The Scottish Government now funds this initiative and families of every deceased organ donor have the opportunity to add a silver leaf to the Loveseat to represent that donor's gift. There is limited space left on the Loveseat for new leaves to be added and a new memorial will soon be required.

Key actions

7.6 The Scottish Government should undertake a full public consultation on potential approaches to increasing organ donation in Scotland. (Recommendation 20)

7.7 Such a consultation should seek to establish public and professional views on specific issues such as (but not limited to):

• reciprocity (where those have signed up to the Organ Donor Register have priority for receiving an organ if they ever need one);
• financial contribution to funeral costs of donor families;
• a hard-line approach to self authorisation and family authorisation (where, if an individual has authorised that their organs can be used for transplantation, donation should proceed even without family support);
• required referral, where the NHS is required to refer any potential donor to SNODs; and
• measures to preserve the option of donation before speaking to a family member.

7.8 It is important that the gift of donation continues to be recognised. Some local donation committees around Scotland have commissioned artwork or memorials in recognition of the gift provided by donors. The Scottish Government should undertake work to establish a new national memorial to organ and tissue donors. Such a memorial should be easily accessible. (Recommendation 21)