Organ donation rules in Northern Ireland change as Dáithí's Law comes into effect

It has been named Dáithí’s Law after six-year-old Belfast boy Dáithí Mac Gabhann who is currently waiting on a new heart.

The day marks Dáithí's fifth year on the waiting list and his family, who have led a high profile campaign calling for the law on organ donation in Northern Ireland to be changed, say they are ‘celebrating the five extra years of life and precious memories’.

Last year in Northern Ireland, 96 patients received a life-saving transplant from a deceased donor, and Northern Ireland had 59 donors who enabled 140 life-saving transplants across the UK. Sadly, 10-15 patients die each year in Northern Ireland while awaiting a transplant.

Dáithí’s father Máirtín said he hoped the law change would help ‘normalise’ organ donation and save lives.

Speaking on Radio Ulster, Mr Mac Gabhann said he felt the law will “change the conversation when organ donation can takeplace and take the pressure off families when no decision has been recorded”.

He said that while it “fills our hearts with hope” every time they seeing people whose lives have been changed through transplants, there were many who hadn’t had that chance.

"We’ve lost a lot of the organ donation family on the way. We would dedicate this day to them,” he said.

Mr Mac Gabhann said that they would still shine a light on the need for paediatric organ donation as children have to wait much longer than adults for a transplant.

Permanent Secretary Peter May said it was “a hugely significant landmark day” for organ donation in Northern Ireland.

"More than 140 people are waiting for transplant across Northern Ireland. The opt-out system means that all adults in NI, unless in an excluded group which includes children under 18 years, those who lack capacity to understand the new law and those who are temporarily resident in NI, will be considered to be organ donors after death unless they chose to opt-out,” he said.

"Everyone will still have a choice – people are free to opt-in, opt-out or amend their decision at any time – and families will continue to be consulted. We know that the vast majority of people here say that they support organ donation in principle, but many people still haven’t got round to signing the NHS Organ Donor Register or telling their families. By switching to an opt out system, the hope is that this makes it easier for families to support donation.

"We have already seen increased awareness, discussion and support for organ donation during the law change process and I hope that in time, this will lead to more people saying yes to donation and saving even more lives.”

The British Heart Foundation in Northern Ireland (BHFNI) has welcomed the introduction of the new legislation.

Head of BHFNI Fearghal McKinney said: “Today is a historic day as Dáithí’s Law on soft-opt out organ donation goes live. This is a day which will give hope to all those waiting for the gift of life.

"It is a tribute to all those who have fought hard to bring organ donation into the public eye, in particular, the Mac Gabhann family who had campaigned tirelessly for this.

"The British Heart Foundation Northern Ireland has been proud to stand with the family and support them on their journey.

"It is entirely fitting this new system is named after Dáithí, the remarkable six year-old who has been at the centre of this campaign.

"Now everyone can get involved by registering to become an organ donor and, crucially, having the conversation about organ donation with their families and loved ones so they know your wishes.

"Choosing to give someone the gift of life is the greatest gift you can give, and this legislation will hopefully help save many more lives.”

Meanwhile, the Lord Mayor and Belfast City Council will confer the Freedom of the City on Dáithí on Saturday, June 3.

The decision to bestow the city’s highest honour on the six-year-old is in recognition of his campaign to raise awareness around organ donation and lobbying for a change in the legislation in Northern Ireland.