Kidney Care UK is committed to raising awareness of life-saving organ donation and kidney transplantation.

As a result of many years of campaigning and lobbying, all UK adults are now considered potential organ donors unless they choose to opt out or are in an excluded group.

We are honoured to have been joined by so many patients along the way whose personal stories about the impact of living with chronic kidney disease (CKD), both on themselves and on their loved ones, helped to bring the real lived experience to bear on law makers in all parts of the country. Thank you.

Changing organ donation law thanks to kidney patients

The part that kidney patients played in law change was significant.

Organ donation law in England

In England, when the law was passed in March 2020, 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.

We attended every single committee meeting and debate in person, in the House of Commons and the House of Lords, and sent briefings out in advance to explain the need for more kidney transplants and were cited in many of those debates.

We even managed to get the opt-out law mentioned in a story on Coronation Street!

Lots of you joined us in Parliament at Westminster for our many Organ Donation Week meetings, jointly held with NHS Blood and Transplant.

Organ donation law in Northern Ireland

In June 2023, the law (known as Dáithí’s law after a young boy waiting for a heart transplant) was changed in Northern Ireland where our Ambassador Jo-Anne Dobson was credited by the former Health Minister Robin Swann MLA as the first person who convinced him of the need to move to an opt-out system. Our extensive work included Policy Director Fiona Loud giving clear patient-centred evidence to Parliamentary Health Committees as they conducted their scrutinising roles and working closely with the Departmental Bills teams. Kidney Care UK was included and quoted in the Minister’s original Departmental press statement and throughout the subsequent debates.

Organ donation law in Wales

Wales was the first country to adopt opt-out legislation, the law was changed in December 2015, and credit goes to Kidney Wales for their effective advocacy. We were pleased to contribute to the consultation, take part in a Westminster event at the start of this work and of course to go to the Welsh Parliament several times. Much of what we learned there, and the outcomes, we applied to subsequent campaigning.

Organ donation law in Scotland

Scotland changed its organ donation law to deemed consent in March 2021. Kidney Care UK was pleased to have given evidence in person at Holyrood in support of those waiting for transplants following discussion and response to the consultation put out by the Health and Sport Committee, and input from our patient advocacy officer.

Organ donation: ongoing campaigning and awareness is vital

Even with the new laws, having the family conversation about organ donation and sharing your wishes with your loved ones remains crucially important as does opting in by adding your name to the Organ Donor Register to say you wish to be a donor.

It is encouraging to see that, from 38% in 2018, 43% 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.

However the consent/authorisation rates for organ donation fell again last year from 66% to 62%. The main reason given as to why families did not support organ donation is because their loved one had previously expressed a wish not to donate. Overall last year, 1,130 families declined support for organ donation after losing a loved one, meaning hundreds of opportunities for transplant were missed. The more people who sign the NHS Organ Donor Register and tell their families of their decision to be a donor, the more families will support that decision and the more lives will be saved. Public education programmes on organ donation were reduced during Covid but now need renewal and funding.

Kidney Care UK has consistently highlighted that while changing the law is the right thing to do it isn’t the only thing and, from day one, we have been calling for and actively supporting fully funded and all-encompassing public awareness and education campaigns to be brought forward in all four nations, alongside adequate NHS capacity to deliver those transplants.

Covid-19 and its effect on kidney transplantation

The pandemic led to unprecedented challenges for UK transplantation which are still impacting on capacity, waiting times and pressure on staff.

Concerns about the ability to care for transplant recipients, lack of access to resource because it was being used for patients in the pandemic, and the risk versus benefit for immunosuppressed transplant recipients, resulted in a major reduction in the number of organ transplants undertaken, therefore lengthening waiting lists.

The numbers on the waiting list are at a nine year high, and much more needs to be done to improve the opportunities for people to be able to receive a transplant. Whilst we can be rightly proud of these achievements in law, we are continuing our pressure in the weeks, months and years which lie ahead, including continuing to work with elected representatives, Department of Health officials and communities to increase organ donation and improve the chances of those waiting to receive a transplant.

That is why we are brought patients and families to Parliament for Organ Donation Week 2023 so MPs could hear what transplantation really means to lives; that is why we are in the Organ Utilisation Group to bring forward the recommendations for Honouring the Gift of Donation to maximise the potential for organ transplantation and place the patient at the heart of the service.

The momentum must not stop, and we call for increased funding for education and for technology to improve the quality of donated organs across all regions.

Please get in touch with your stories of organ donation and how it is for you as you wait because there is always media interest about organ donation; furthermore, please get involved with our campaigning work.