On 20 May 2020, the law around organ donation in England was changed to allow more people to consent to donating organs. Since December it will be ten years the law changed in Wales.
The changes mean people aged 18 and over who have lived in England and Wales for more than 12 months and die in England or Wales will be regarded as having consented to organ donation unless they have made a clear decision not to become a donor. That decision can be recorded on the NHS Organ Donor Register.
Sadly, in the ten years since the bill came to force in Wales, the number of people overriding the decision of their deceased relative has increased in Wales, meaning there are less organs available for people who desperately need them. Public reactions are still mixed on the issue with many expressing concerns about the families ability to override the decision of the deceased whilst balancing this with a need to preserve trust in the system. However, public support for organ donation has remained high (80%) before and after the law change in England.
This new online resource helps families understand what donating organs means for an individual, by clarifying how the law works, support informed conversations about donation, and ensure people's decisions are better understood and respected. It does this, by sharing the real experiences of people who have been involved in an organ donation conversation after their relative died and the professionals involved in supporting families through what is an incredibly difficult time.
The online resource on Healthtalk website includes first-hand accounts from families across England about donating organs. Families will be able to hear from specialist nurses explaining how they support families and clarify how the legislation is designed to help individuals. It has dedicated sections on ethnicity and faith, aiming to support people from communities where talking about organ donation may be challenging, or where misinformation has caused confusion or mistrust. The resource has clear explanations of ‘deemed consent’ in the ‘opt out’ system, the role of families, and how to register or share your decision.
The resource was created after extensive research, which included reviewing Parliamentary debates, media analysis, routine audit data and interviews with healthcare professionals, the public, and families of potential donors.
The report is available to read here: https://researchonline.lshtm.ac.uk/id/eprint/4673056/
Families frequently told us how overwhelming and disorienting it was to be approached about organ donation at such an emotionally raw moment—often just hours after the sudden death of a loved one. By sharing their stories here, we hope others will feel more prepared for what donation involves, less shocked when it is raised, and more confident in discussing their decisions ahead of time.
It is rarely the principle of organ donation that families struggle with, but when confronted with the reality of what it involves; namely the time needed to organise the organ retrieval and the perception of invasive procedures, families understandably are not prepared. While their reactions are entirely human, they can unintentionally override the decision their loved one made in life—denying them the chance to help others and, in some cases, going against the intention of the law. That’s why early conversations, clear information, and support are so vital.
Our research showed that while public support for organ donation remains high, many families are still unsure what their relative would have wanted. The updated HealthTalk resource offers clear, compassionate guidance to help individuals and families understand the law and ensure they are reassured in extremely difficult circumstances.
Healthtalk is an amazing collection of short videos for people to view. Healthcare professionals can also signpost people to the videos to help with their decision-making concerning organ donation. The videos are a brilliant training resource for student doctors, nurses and allied health professionals. Healthtalk is free to access and I'm thrilled that research conducted by Bangor University staff has made this resource possible.
