Donation and transplantation plan for Scotland 2013-2020

Priority 1: Increasing the number of people in Scotland who have made their wishes about donation known

Introduction

3.1 In Scotland, the Human Tissue (Scotland) Act 2006 sets down the legal basis for organ, tissue and cellular donation and transplantation. Under the terms of the Act, individuals can authorise the use of their organs after death for the purposes of, amongst other things, transplantation. This authorisation can be in the form of a discussion with relatives or in writing (for example, by carrying a donor card), or by signing up to the NHS Organ Donor Register.

3.2 It is not necessary to be on the NHS Organ Donor Register to become a donor. Where any individual dies in circumstances that might allow for donation, regardless of whether or not they are on the NHS Organ Donor Register, the NHS should discuss with family members whether or not the deceased had made their wishes known. In circumstances where wishes had not been made known family members can still authorise donation on behalf of the deceased. It is of note that in Scotland over the last five years 62% of donors were not on the Register at the point of death.

3.3 The donation process should however work most efficiently and effectively when those who wish to donate have signed up to the NHS Organ Donor Register. We also know that families are more likely to authorise donation when an individual has expressed their wish to donate. For these reasons, it is important that we do all we can to enable everybody to make their decision known by registering.

Where are we?

3.4 Over the last five years the number and proportion of people in Scotland on the NHS Organ Donor Register has increased markedly - from 29% in 2007/08 to over 41% at the end of 2012/13. Amongst the UK countries, Scotland now has the highest proportion of its population on the Register.

3.5 A key driver of this increase has been the annual, national awareness-raising campaigns which the Scottish Government has funded. Evidence shows that in the months when the national campaign is running the numbers signing up to the register increase significantly - for example in November 2012, following the launch of the annual campaign in October 2012, there were 23,000 new registrations. The new Scottish organ donation website - http://www.organdonationscotland.org/ - supported this activity by allowing people to sign up to the Register on line, and on the site, without requiring a click through to a separate NHSBT website.

3.6 Scotland and the other UK countries currently operate an 'opt-in' model of consent, where consent or authorisation is not assumed and donors (or their families) have to explicitly authorise donation. The Welsh Government is in the process of legislating to introduce an 'opt-out' model of consent.

3.7 Since 2005 a national organ donation schools pack, possibly the first of its kind anywhere, has been made available to all secondary schools across Scotland. This pack, which also addresses tissue donation, was updated and re-launched in 2010 and a recent independent evaluation showed that 98% of teachers who have used the pack say it is relevant and engaging for students, while 88% of pupils recognised the importance of organ donation and would recommend its continued use in schools. The pack is now recognised internationally as an excellent resource and other countries and institutions such as Australia and the World Health Organization have shown an interest in adapting it.

Key actions

3.8 In order to continue increasing the proportion of the population on the NHS Organ Donor Register it is vital that we continue to raise awareness of organ donation, and encourage people to register. The Human Tissue (Scotland) Act 2006 places a legislative duty upon Scottish Ministers to promote and raise awareness of donation and transplantation. The Scottish Government should continue to fund and deliver high profile organ donation awareness raising campaigns. (Recommendation 1a) As part of this work the new Scottish organ donation website should be maintained and developed as necessary, to enable Scottish residents to have up-to-date information on organ donation and the ability to easily and simply join the Register. This action is consistent with recommendation 13 made by the ODTF:

"There is an urgent requirement to identify and implement the most effective methods through which organ donation and the 'gift of life' can be promoted to the general public, and specifically to the Black and Minority Ethnic population"

3.9 Although Scotland does not have a large black, Asian or minority ethnic (BAME) population (around 2% in 2001 census - although the 2011 census might show an increase on this) ethnic minorities are at greater risk of conditions that might lead to transplantation being required (diabetes, heart disease). It is for this reason that specific work has already been undertaken, including promotion of organ donation at cultural festivals such as Hungama and the Glasgow and Edinburgh Melas, at faith venues (gurdwaras, mandirs and mosques) and during religious celebrations (Eid and Vaisakhi). In recent years Scotland has also seen an increase in the number of residents from other parts of Europe such as Poland. Information and awareness-raising activities should also give consideration to the information needs of such populations. The Scottish Government should ensure that proportionate targeted awareness raising and education work continues with BAME and other relevant communities in Scotland, linking up to similar work across the UK as appropriate. (Recommendation 1b)

3.10 Members of the Scottish Transplant Group have previously provided views on the potential benefits of the introduction of an 'opt-out' system of consent within Scotland. There is no consensus amongst members of the STG as to whether or not 'opt-out' would increase donation rates in Scotland. Given this, and the fact that significant improvements have been achieved over the last five years in relation to donation and transplantation rates in Scotland, the Scottish Government should await evaluation of the move to 'opt-out' in Wales before making any decision about the introduction of opt-out in Scotland. (Recommendation 2) In the meantime the Scottish Government, the Scottish Transplant Group, and other key partners should focus on delivering the recommendations within this plan.

3.11 The schools pack has been recognised internationally as a valuable tool to educate and inform children about organ donation and transplantation. The Scottish Government should ensure that the schools pack continues to be maintained and updated as necessary, and consideration should be given to providing the pack in other accessible formats, such as in e-book format. (Recommendation 3)