Following years of campaigning and lobbying, individually and alongside others, all UK adults are now considered potential organ donors unless they choose to opt out or are in an excluded group.
Sharing the patient voice across the country
We’re honoured to have been joined by so many people whose personal stories about the impact of living with chronic kidney disease, 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 laws 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 attend the Welsh Parliament several times. Much of what we learned there, and the outcomes, we applied to subsequent campaigning.
Changing organ donation laws in England
The part that kidney patients played in law change was significant, and when the English 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, provided briefings to law makers to explain the need for more kidney transplants and were cited in many debates.
- We even managed to get the opt-out law mentioned in a story on Coronation Street!
- Lots of you joined us at Westminster for our many Organ Donation Week meetings, jointly held with NHS Blood and Transplant.
Changing organ donation laws in Scotland
Scotland changed its organ donation law to deemed consent in March 2021.
Kidney Care UK provided clear patient-centred evidence at Holyrood in support of those waiting for transplants, responded in detail to the Health and Sport Committee’s consultation, and provided input from our Patient Support & Advocacy team.
Changing organ donation laws in Northern Ireland
In June 2023, the law changed in Northern Ireland, where our Ambassador Jo-Anne Dobson was credited by the then 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, working closely with the Departmental Bills teams as well as being quoted in the Minister’s original Departmental press statement and throughout the subsequent debates.
Transplantation rates in the UK
It’s encouraging that, from 38% in 2018, 45% of the UK population, that’s 30 million people, have registered their decision on the NHS Organ Donor Register.
However, the consent/authorisation rates for organ donation fell again last year from 66% to 62%. The main reason given by families who did not support organ donation was their loved one having previously expressed a wish not to donate.
With numbers on the transplant waiting list at a nine-year high, much more needs to be done to improve the opportunities for people to be able to receive a transplant.
The impact of Covid-19 on transplants
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.
What needs to happen to increase organ donation and transplantation?
Kidney Care UK has consistently highlighted that while changing the law is the right thing to do, it isn’t the only thing.
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.
We will continue to call for and actively support fully funded and all-encompassing organ donation public awareness and education campaigns to be brought forward in all four nations, alongside adequate NHS capacity to deliver those transplants.
Get involved with our campaigning work
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.