The organ donation opt-out law 2 years on

Two years ago, on 20 May 2020, the law on organ donation changed in England. This change in the law means that people in England are considered as willing to donate, unless they have opted out, are in one of the excluded groups [1] or have told their family they don’t want to donate.

Similar legislation was introduced in Wales in 2015 and Scotland also switched to an opt out system in March 2021.

Following a campaign in Northern Ireland, led by our team, especially Jo-Anne Dobson, herself a kidney donor to her son, agreement has now been reached in Northern Ireland that opt-out will become law there too, meaning these rules will soon apply across the whole UK.

Guernsey has recently confirmed the law will change there on Jan 1st, 2023.

Organ donation law change: our thanks to kidney patients

The part that kidney patients played in law change was significant, and when the English law was passed, the then Health Secretary sent us a message in recognition of the extensive work we had done to bring the law forward both in parliament and with the public.

Many of you joined us in Parliament at our Organ Donation Week meetings and many of you told your stories to the media so that the public would understand what organ donation meant to you. Thank you.

The law changed at a point when the Covid pandemic was really biting, but the increased awareness and the opportunity for more transplants gave everyone hope. Transplant services practically closed down twice during 2020 and while 296 organs were donated under the opt-out law during the first year of the Covid pandemic the total numbers of transplants were down. During 2021 there was a very slow catch-up but living donation in particular has reduced.

Our view as Kidney Care UK has always been that law change is only part of the work necessary to improve the opportunities for people to be able to receive a transplant – albeit an important part. We have consistently said that the change to an opt-out system is the right thing to do, but not the only thing to do. Public education, including at schools and colleges and within the NHS itself, will always be needed. Adequate capacity in terms of staff and bed space and operating theatres is vital too.

That is why we are closely involved with the work of the Organ Utilisation Group, which has been set up by the Health Secretary to identify and make recommendations on how to maximise the potential for organ transplantation. You can read about this in Issue 16 of Kidney Matters. We are looking forward to the publication of those recommendations in due course.

Organ donation in the UK: the current picture

According to the latest figures from NHS Blood and Transplant we are now at a five year high of people on the waiting list, with 6,260 in total on the list at April 30 2022 vs 6,029 at the same date in 2018. For kidney patients it is not quite so bad, with 4,743 people waiting now compared with 4,811– and every number on these lists is a person with their own story. The growth of the waiting list is likely to be because some people were suspended from the list for a long time due to Covid restrictions and have now been relisted, some transplants simply couldn’t go ahead for the same reasons and there is also the squeeze on NHS capacity. As an example, some units have had to close their transplant services again for periods of time due to continued pressure during the Omicron wave. This is of course disappointing, and we continue to encourage those vital donation conversations, whilst keeping going with the work on system improvements. It took five years for Wales to see the increase in donation they had hoped for after the law change there in 2015 and it is not easy to get a clear picture yet of improvements in England.

Just because the law changed does not mean that people are not encouraged to let their families know what their organ donation wishes are and it is extremely encouraging to see that 42% of the population of the UK have now opted-in by adding their name to the Organ Donation Register, which is where you can say that you wish to be a donor. (Please note the accuracy of the data may have been affected by the pandemic.)

In conclusion then, there is more public support for organ donation than ever, there continue to be wonderful and generous donors and their families, and the transplant system overall is catching up in a stop and start manner because we have a system under stress. Please get in touch with stories of organ donation and how it is for you as you wait because there is always media interest about organ donation.

• Organ donation: the latest statistics
• Organ donation – one year on

For more information, or to register your organ donation decision, please visit: www.organdonation.nhs.uk or call 0300 123 23 23. NHS app users can also use the service to record, check or update their organ donation decision.

[1] Those excluded include people under 18, those who lack the mental capacity to understand the new arrangements and take the necessary action; people who have lived in England for less than 12 months; those who are not living here voluntarily and those who have nominated someone else to make the decision on their behalf.