Family’s pride on first anniversary of rule change

The family of the child who inspired a change in Northern Ireland’s organ donation rules are celebrating his “amazing legacy” on the first anniversary of the law that bears his name.

Dáithí’s Law was named after seven-year-old Belfast boy Dáithí Mac Gabhann, who has been on the waiting list for a heart transplant since 2018.

The legislation means that most adults in Northern Ireland are now considered as potential organ donors after their death, unless they actively opt out.

Stormont’s Department of Health has said it is still too early to report on the impact of Dáithí’s Law, as that would require figures to be monitored over several years.

However, it did reveal that Northern Ireland recorded its highest number of organ donors to date last year.

There were 64 donors in 2023/24, compared to 59 during the previous year.

Although the increase is relatively small, those 64 donors assisted in saving the lives of 158 people who needed organ transplants.

Dáithí’s father Máirtín Mac Gabhann, who led the campaign to pass the law, said their family is “incredibly proud to have played our role in its implementation”.

“Celebrating the first anniversary of Dáithí’s Law fills our family with immense pride and gratitude,” he added.

“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.”

Dáithí has spent six of his first seven years of life on the waiting list.

He is one of 153 people in Northern Ireland currently in need of a transplant.

Each year, 10 to 15 people die before they are matched with a donor and it is hoped that Dáithí’s Law will increase the number of potential organs.

Even though it is now presumed that most adults consent to donating their organs after death, the Public Health Agency (PHA) stressed that their families still have a choice as they will be consulted in the event that donation becomes a possibility.

A total of 73 families in Northern Ireland consented to organ donation in 2023/24, of which 64 cases proceeded to the transplant stage.

Not all families agree to donation, but the Department of Health said the consent rate has also risen over the past year.

The percentage of families who gave their consent was 68% in 2023/24, up from 65% in 2022/23.

But in 54 cases where the potential donor had already made their wishes known, the consent rate rose to 93%, with 50 of those families agreeing to donation.

Health Minister Mike Nesbitt welcomed the early figures, saying: “The latest data highlights the continued positive impact organ donation has on saving lives.”

He added that 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”.

PHA chief executive Aidan Dawson encouraged people who want to become donors to ensure that their loved ones are made aware of their wishes.

“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,” he said.

More than half the population of Northern Ireland have already opted in to become donors and recorded their wishes by signing the NHS Organ Donor Register.

In total 1,053,541 people had signed up by 22 May this year.

With 55% of all residents saying yes, Northern Ireland has the highest percentage of willing donors of all UK regions.

The same register can also be used if you want to opt out of becoming an organ donor.

Statistics show the number of people who choose the “do no donate” instruction was also on the increase over the past year.

Figures obtained from the PHA show there were 7,115 opt outs by the end of March 2023, but by March 2024 that figure had increased by over 15,000.

The very latest figures show 22,697 people in Northern Ireland had opted out by 22 May this year, which equates to 1.2% of the local population.

Not everyone will be automatically considered as a donor as there are several groups excluded from the scope of the legislation.

They are:

• children under 18
• people who lack the mental capacity to understand the change in law
• visitors to Northern Ireland
• temporary residents

Organ donation figures are recorded in financial years between April and March, but the Department of Health confirmed that most of last year’s donors (60) gave organs under the new legislation, which took effect from 1 June 2023.

The Mac Gabhann family will spend Saturday at Belfast City Hall, where the lord mayor is hosting a family fun day to mark the first anniversary.

“We want to encourage people on this day to keep joining the organ donor register and sharing that organ donation decision,” Mr Mac Gabhann said.

He also expressed “heartfelt gratitude to all those who have donated and to the donor families”, describing them as “superheroes”.

“The hope they will have brought into families like ours is the greatest gift of all.”