Organ and tissue donation: baseline report 2021

Executive Summary

'The Human Tissue (Authorisation) (Scotland) Act 2019' came into effect on 26 March 2021 and introduced a system of 'deemed authorisation' for organ and tissue donation for transplantation, changing the previous 'opt-in' system to an 'opt-out' system. This report presents data about organ and tissue donation in Scotland prior to implementation of the Act, organised into three main categories:

Public Attitudes:

• Multiple surveys have shown high levels of awareness and understanding of, and support for, the move to an 'opt-out system.

• Similarly, the majority of survey respondents reported support for, and trust in, the opt-out system.

• More than half of respondents in these surveys reported having had a conversation with family or a loved one about their organ and tissue donation decision.

• Barriers to donation and opt-out support may include concerns such as medical mistrust, discomfort at the thought of one's body being operated on for organ/tissue retrieval, and a perceived threat to one's freedom of choice.

• In the UK, minority ethnic groups tend to be less supportive of organ donation generally and have greater concerns about it.

Workforce:

• By majority, NHS staff are supportive of the move to an opt-out donation system, while also recognising that donation is a challenging experience for both patient families and staff.

• Most staff felt that the law change would support current practices, which were described as in line with the goals and practices inherent in an opt-out system.

• Across the different staff groups, support for donation was grounded in the view that organ and tissue donation can positively impact donor families' lives.

• By majority, NHS staff members felt that the publicity about implementation of the Act could bring about positive impacts to the donation system in Scotland such as raising the profile of both organ and tissue donation, and prompting people to register their wishes on the Organ Donor Register.

• NHS staff members also highlighted difficult aspects of donation and concerns about the implementation of an opt-out system, which centred on maintaining patient and family trust and the 'gift' of donation, understanding about what donation entails, and worries that people might feel pressured to donate.

• NHS staff felt that successful early identification and referral of potential donors, and successful authorisation processes can be supported in a number of ways which centred on visibility of, and good working relationships with SNODs and CLODs, as well as positive feedback.

• NHS staff identified a number of key items to address in training/events aimed at NHS staff about the law change, which have helped to inform NHS training sessions.

• NHS staff training sessions were effective in raising staff confidence levels in a number of key areas, compared to pre-training levels. The most marked increases in confidence levels were in areas of practice related to understanding changes in, and explaining, Pre-Death Procedures.

Monitoring Data:

Organ donation 2019/2020 data in Scotland:

• Overall consent/authorisation rates: 64%

• Referral rate: 95%

• Proportion of approaches of a patient family made with SNOD present: 90%

• Proportion of potential donors who had registered a decision on the ODR: 85%

• Proportion of patients who met organ donation referral criteria and became donors: 26%

• Proportion of families upheld a patient's pro-donation decision and authorised donation: 64%

Tissue donation reports slightly different data sets with the 2019/2020 figures for Scotland showing:

• Proportion of approaches of potential tissue donor's nearest relatives by a TDC, who went on to authorise donation: 85%

• Proportion of approaches of nearest relatives in the potential tissue donor pool by clinical staff treating the patient in the Emergency Department to consider tissue donation: 35%

• Proportion of actual tissue donors who had registered a decision on the ODR: 65%

• Proportion of nearest relatives that were approached about tissue donation, but declined the option to speak with a TDC to formally consider donation: 36%.