Father 'devastated' at delay to organ donation legislation

The father of a six-year-old boy waiting for a heart transplant has told UTV he is 'devastated' that proposed new legislation has been stalled at Stormont.

It comes after it was revealed a new law around organ donation will be delayed due to the political stalemate in Northern Ireland.

Dáithí's law, which would see an opt-out system put in place, was scheduled to come into effect in the next few months.

It would mean people would automatically become organ donors when they die, unless they stipulate otherwise.

However, the legislation cannot move forward due to the absence of a functioning executive at Stormont.

Dáithí Mac Gabhann's father Máirtín has been campaigning for the law change.

His six-year-old son has a condition called hypoplastic left heart syndrome and has been on a waiting list for a new heart for the last four years. Máirtín said the delay is unacceptable:

"Last year when Dáithí's law was agreed it was such a day of hope for our family it was a day of hope for all those waiting on the gift of life.

"It was a day when we were told this is how politics should work at Stormont so ten/eleven months down the line and when Dáithí's law's just about to be implemented to hear this is just devastating."

In a statement the Department of Health said: "The passing of ‘Daíthí’s Law’ by the Northern Ireland Assembly in February 2022 marked an important first step in the introduction of a deemed consent system for organ donation in Northern Ireland.

"Royal Assent was received in March 2022, allowing for a 12 month period of implementation and preparation which has included staff recruitment, training and education, as well as a comprehensive programme of public awareness.

"For Dáithí’s Law to come into effect, secondary legislation is required, and this needs to be laid before the Northern Ireland Assembly.

"As the Assembly is not currently sitting, the planned legislation commencement date of Spring 2023 will be delayed.

"As a result, contingency plans have been activated which will allow the Department’s implementation planning project to remain in a state of readiness pending the restoration of the Assembly.

"In the meantime, while public awareness activities will continue to ensure the population is reminded of the forthcoming law change, the Department has advised stakeholders that, unfortunately, it is not possible in the absence of the Assembly to confirm a “go-live” date for Dáithí’s Law.

"Organ donation remains an important priority, and everyone is encouraged to continue to consider it, sign the NHS Organ Donor Register, and discuss their decisions with family."

Although Máirtín remains hopeful that a donor for Dáithí can be found soon, he says he can see a deterioration in his son's condition:

"Our whole lives have been put on hold from Dáithí being put on the transplant list and we turned it into such a positive and we have directed all that negative energy into this campaign, into changing this law and to succeed last year and now to be that year down the line when it's to come into effect and to be told no that's disgraceful I think."

He added: "We've started to see Dáithí slow down over the last couple of months, his oxygen levels haven't been as high as we would like, he has his own wheelchair on its way and his energy levels haven't been as good as we would like them to be.

"Thankfully he's still stable but...the word time is always thrown about in organ donation and transplantation and time is not on the side of those waiting on the gift of life."

It comes as the man currently in charge of the health service in Northern Ireland told UTV the lack of a devolved government is the stumbling block to getting the law over the line.

Permanent Secretary at the Department of Health Peter May spoke to UTV's Health Reporter Deborah McAleese.

He said: "The assembly passed some legislation last February that changed the consent arrangements for organ transplants and in that legislation it requires regulations to be made setting out in more detail...and the regulations need to be approved by the assembly and clearly at the moment we don't have an assembly in place so we aren't in a position to proceed to make those regulations."

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