Minister marks first anniversary of Dáithí’s Law

Service Development and Screening
organ donation event

One year on from the introduction of Dáithi’s Law, Health Minister Mike Nesbitt has welcomed the increase in the number of donors and families supporting organ donation.

Saturday 1 June marks one year since the Organ and Tissue Donation (Deemed Consent) Act (Northern Ireland) 2022 came into effect in Northern Ireland.

Known as ‘Dáithí’s Law’ in recognition of seven year-old Dáithí Mac Gabhann – who has been on the waiting list for a heart transplant since 2018 - the law means that adults in NI are considered potential organ donors unless they choose to opt in or opt out, or are in an excluded group.

The total number of deceased donors here increased again in 2023/24, with 64 donations proceeding to save lives (up from 59 in 2022/23), the highest number of organ donors so far.  Since the law change on 1 June 2023, to 22 May 2024, there have been 60 organ donors. 

Health Minister Mike Nesbitt welcomed the early figures:  He said: “The latest data highlights the continued positive impact organ donation has on saving lives. In total, the 64 organ donors from NI in 2023/24 have saved 158 lives, and 79 patients from here have had a life-saving transplant.

“Seeing the increase in the number of donors and families supporting organ donation is incredibly positive and also gives hope to those in great need of a life-saving transplant.

“At the heart of organ donation and transplantation are the organ donors and their families who support a loved one’s decision when facing the very worst news.  We are forever grateful to our organ donors and their families for the decisions they make.”

Support for organ donation in Northern Ireland remains very high, at 90%. And 93% of people agree that organ donation is a gift of life for whoever receives it. 

Since the law change a year ago, there continues to be an increase in people registering decisions on the NHS Organ Donor Register. In 2022/23, a total 53% of people had registered a decision, which rose to 56% in 2023/24. Currently, 1,053,541 people here have registered a decision to donate their organs if possible, including over 38,000 since the law changed, with around 10,000 of these in January to March of this year alone. 

Public Health Agency Chief Executive Aidan Dawson said: “It is extremely encouraging to see the latest data which is testament to the continued support for organ donation here and most importantly, for the decisions of organ donors supported by their families at a very difficult time.

Even though the law around organ donation has now changed, it is important to know that people still have a choice and families will still be consulted if organ donation becomes a possibility.  Continuing to register decisions on the NHS Organ Donor Register, and talking to family are the best ways to help your family support your decision.”

During the six years that Dáithí Mac Gabhann has been on the waiting list for a heart transplant, his family have worked tirelessly to campaign for the soft opt-out law and to promote organ donation. Dáithí’s father, Máirtín, said: "Celebrating the first anniversary of Dáithí’s Law fills our family with immense pride and gratitude. It felt like we moved mountains at times to help get this new law in place, and it’s hard to believe it’s already been a year since it has taken effect.

“The journey seemed impossible at times, but we are incredibly proud to have played our role in its implementation. Knowing that lives are being saved in our boy’s name is an amazing legacy.

This day also marks Dáithí being six years on the transplant waiting list, which is also a celebration for our family as we are still grateful to have him here with us. We want to encourage people on this day to keep joining the organ donor register and sharing that organ donation decision. We’re also hoping that families take that courageous decision and join the register as a family, regardless of age.

“We extend our heartfelt gratitude to all those who have donated and to the donor families, who are superheroes themselves. The hope they will have brought into families like ours is the greatest gift of all.”

 

Notes to the editor

Notes to editors:

  1. The consent rate for organ donation in NI also continues to rise with a rate of 68% in 2023/24, up from 65% in 2022/23.  A total of 73 families consented to organ donation in 2023/24, with 64 proceeding. 54 families whose loved one had expressed a decision to opt-in were approached for consent and 50 of these proceeded to donation. This is a consent rate of 93% when a loved one’s decision is known.  The remaining 14 donations were under the new Deemed Consent legislation (where the patient had not expressed a prior organ donation decision either to opt in or opt out, and was not in an excluded group). However, it is considered too early to report on the impact of Dáithí’s Law in NI, as it will be necessary to monitor donation and consent rates over a period of several years to properly assess its effect.  
  2. To find out more about organ donation, the law change, or to opt in or out, visit: www.organdonationni.info or call the dedicated advice line on 0300 123 23 23.
  3. *Those groups excluded from the new deemed consent legislation include:
    1. Those under the age of 18
    2. People who lack the mental capacity to understand the change in law
    3. Visitors to Northern Ireland
    4. Temporary residents
  4. Families will always be involved before organ donation goes ahead .Only half of families agree to donation if they don’t know their loved one’s decision, but this rises to 9 out of 10 if they know their loved one wanted to donate. Whatever you decide, the best thing you can do is talk with your loved ones to give them the certainty they need to support your decision
  5. Each year in Northern Ireland around 10-15 people die while awaiting a transplant
  6. There are 153 people in NI on a transplant waiting list (as at 22 May 2024)
  7. 90% of people in Northern Ireland support organ donation
  8. Over 56% of people have signed the Organ Donor Register as at 22 May 2024 (the highest percentage of all UK regions):
    1. Opt-in: 1,053,541 (55% of population)
    2. Opt-out: 22697 (1.2% of population)
  9. Only 1% of people die in circumstances where donation is possible, therefore every donation is precious
  10. You can become a living donor: Across the UK, more than 1,000 people each year donate a kidney or part of their liver while they are still alive to a relative, friend or even someone they do not know. The most commonly donated organ by a living person is a kidney. Part of a liver can also be transplanted from a living donor to help someone in need of a liver transplant.