Aimee Duncan is an organ donation advocate and British Heart Foundation Northern Ireland volunteer. In this article, Aimee writes home from Nottingham, where she is a veterinary student, to call for a change in the law on organ donation. 

Northern Ireland is the only part of the UK without a soft opt-out system of organ donation. 

Scotland’s new law on organ donation came into effect on  26 March 2021, meaning that  all adults in Scotland, England and Wales are considered to be organ and tissue donors unless they opt out. In the “soft opt-out system”, family members are consulted before organ donation and their wishes are respected. Northern Ireland continues to operate on an “opt-in” basis; anyone who wants to donate is asked to join the NHS Organ Donor Register and share their decision with family so that their wishes are known.

Around 200 heart transplants are carried out in the UK every year, but more people could benefit if the number of donors increased.

Sadly, my father, Andrew Duncan, passed away at the age of 38 in November 2014 while he was on the transplant list, waiting for the gift of a heart. Dad was waiting on a heart transplant for many years both at home in Londonderry and in hospital in Newcastle, England. His heart had failed due to an inherited condition called Dilated Cardiomyopathy (DCM). 

DCM is a disease of the heart muscle that makes it become stretched and thin. This means that it’s unable to pump blood around your body efficiently. If you have DCM, there is a 50% chance that your child will inherit the condition, so this same situation is unfortunately a very real possibility for my brother Robbie (19) and me (21). Dad was just 23 years old when he was first put on the transplant list. As we get older, if we do develop DCM, and subsequently heart failure, the only option is a heart transplant.

Aimee is a British Heart Foundation NI volunteer

An opportunity to shift social perceptions

Scotland’s legal change comes after Wales became the first country in the UK to implement a soft opt-out system for organ donation in 2015. In May of last year, a similar system came into effect in England after Max and Keira’s Law was passed by parliament in 2019.

Health Minister Robin Swann has been a great supporter of the law change here, announcing in July 2020 his intention to progress towards a soft opt-out system for Northern Ireland. A public consultation to seek the public’s views on how to introduce a soft opt-out organ donation system in NI closed in February of this year. The Department of Health is currently analysing the responses before bringing forward legislation in the NI Assembly.

Legislation gives us a great opportunity to shift social perceptions relating to organ donation. We have seen the difference that the change has made in Wales since 2015, where family consent increased by nearly 50% in the first two years after the change to an opt-out system. Under a new soft opt-out system in Northern Ireland, families would continue to be consulted about donation, and  considerations around faith and beliefs would be taken into account.

The need for donations is rising

Currently there are around 130 people waiting for an organ transplant in Northern Ireland. 19 of them are waiting on a new heart, and the number of people who need a heart transplant is increasing. In the UK, the latest figures show that the number of patients active on the heart transplant list increased by 164% since 2011. One person’s decision to donate their organs is a gift that can save or improve the lives of up to nine other people.

All MLAs have a role to play in working with the Department and the Minister to get this important piece of legislation over the line before the end of Stormont’s mandate in 2022.

My Dad was passionate about campaigning to raise awareness of organ donation and the need for a change from an opt-in to an opt-out system of organ donation, even back in 2014.

I write this from Nottingham where I am studying to be a vet and where the change that Dad campaigned so strongly for has taken place, thanks in no small part to the campaigning efforts of Max Johnson, and his donor, Keira Ball. Dad did all he could to help others when he was with us, and in death he continues to help through his legacy. Seeing the soft opt-out system introduced in Northern Ireland would add to that legacy, giving others the best chance at receiving their gift of life.

Consider joining the Organ Donor Register here – and share your wishes with your loved ones.