Belfast Telegraph

Party leaders back family's plea for NI soft opt-out organ donation procedure

 

Mairtin Mac Gabhann and Seph Ni Mheallain with son Daithi
Mairtin Mac Gabhann and Seph Ni Mheallain with son Daithi
Seph Ni Mheallain with her son Daithi Mac Gabhann who had open heart surgery when he was just five days old. He is currently on the waiting list for a transplant

By Lisa Smyth

A campaign to increase the number of people saved by organ donation has received a major boost, it can be revealed today.

The parents of a three-year-old west Belfast boy who needs a heart transplant have managed to garner cross-party support for their campaign for the introduction of soft opt-out legislation in Northern Ireland.

A letter calling for the Department of Health to look at the issue has been signed by all political parties and sent to the most senior civil servant in the health service.

It is the latest step by Mairtin Mac Gabhann and Seph Ni Mheallain in their determined campaign to increase the number of life-saving organ transplants that are carried out.

Their son Daithi Mac Gabhann is on the waiting list for a transplant after he was born with a congenital heart defect.

Teacher Mairtin said: "We're obviously delighted to get this support from all the parties.

"Daithi is amazing and he is stable at the moment, which is great, but it also means that he won't be offered a heart as so few become available.

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"I can't tell you how difficult it is when your child needs a transplant. Every day we have him is a bonus, but every day he is here I fall in love with him a little bit more and I can't even begin to imagine my life without him."

From next autumn, Northern Ireland will be the only part of the UK without a soft opt-out system for organ donation.

A soft opt-out system, which means consent is presumed unless a person registers an objection, was introduced in Wales in 2015 and since then consent rates there have increased from 58% to 75%.

England is to introduce new legislation next April, with Scotland following in the autumn.

At the same time, Northern Ireland was the only part of the UK where consent rates fell in 2018/19, making it the lowest ranking nation in terms of achieving consent for organ donation to go ahead.

A total of 82 families were approached about donation in 2018/19 and 30 families declined.

The percentage of cases where consent was given rose when specialist nurses were involved in speaking to the next of kin, highlighting the important role they also play in increasing the number of organ transplants.

Last year, nine patients in Northern Ireland died while on the active waiting list for their transplant.

The letter calling for health officials to look at the possibility of a soft opt-out system here is addressed to Richard Pengelly and signed by DUP leader Arlene Foster, former Sinn Fein health minister Michelle O'Neill, Green Party leader Clare Bailey, SDLP leader Colm Eastwood, People Before Profit MLA Gerry Carroll, Alliance Party leader Naomi Long, UUP leader Steve Aiken and TUV leader Jim Allister.

It said: "Over the last 18 months, the Donate4Daithi campaign has worked tirelessly to raise awareness of organ donation and normalise the conversation around organ donation.

"We have all been inspired by this courageous family and the story of Daithi who was born in 2016 with a rare form of Congenital Heart Disease called Hypoplastic Left Heart Syndrome, and now requires a heart transplant.

"We acknowledge the phenomenal work of the Donate4Daithi campaign, support them in their efforts to normalise organ donation and increase the number of organ donors and transplants, and in light of emerging evidence from Wales and elsewhere call on the department to review the position on a soft opt-out organ donation system for Northern Ireland."

The introduction a soft opt-out system requires a change in legislation which can only happen with a functioning Assembly.

As a result, Mairtin called for the politicians to return to the Assembly as soon as possible.

"I would just say they need to get back and get things sorted," he said. "This isn't just about Daithi, it's about all the people waiting for a transplant and we won't stop until we see a change."

Dr Catherine Coyle from the Public Health Agency said: "We need more people in Northern Ireland to talk about organ donation to increase the number of lifesaving transplants."

To sign the NHS Organ Donor Register go to www.organdonation.nhs.uk

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