The British Heart Foundation Northern Ireland (BHF NI) and the Donate4Dáithí campaign have urged Stormont Health Board not to lose momentum on plans to reform the law on organ donation.
BHF Northern Ireland representative Feargal McKinney and family activists gave evidence to the Northern Ireland Assembly's Health Committee on Thursday 11 November. We warned MPs that there should be “no time wasted” to ensure the Organ and Tissue Donation (Deemed Consent) Bill becomes law by the end of this term.
The Prime Minister and Deputy Prime Minister gave approval for the Bill to become law earlier this year, and Health Minister Robin Swann introduced it into Parliament in June. The Bill is currently at committee stage, where MPs are hearing testimony from experts and campaigners about the proposed legal changes.
Northern Ireland is the only part of the UK without a soft opt-out system for organ donation. Under the proposed bill, everyone would be presumed to be a donor unless they formally opt out. Families would still be consulted about organ donation and any religious or creedal considerations.
Don't waste time
Giving evidence to the health committee, BHF NI representative Feargal McKinney praised the Stormont Assembly's legislative process so far but said no time was wasted to ensure the bill was passed before the next election.
“This reform is so important that we must not lose momentum. But even with the great political will we have seen so far, time is running out to complete the legislative process on this task of Congress,” he said.
“Parliament is scheduled for a three-week Christmas recess, with pre-election campaigning commencing in the last week of March 2022. We commend MPs for the rigorous scrutiny of the Bill and welcome the opportunity to present it to the Health Committee, but we must remember that time is not on our side.”
“We have a tremendous opportunity to change the lives of people on the transplant waiting list and since 2015 we have made a difference, with both transplant consent rates and organ donation rates increasing in Wales.”
“We must pass this important legislation within Congress's powers, and I will do everything in my power to support lawmakers. One person's decision to donate their organs is a gift that can save and improve up to nine lives. I am confident that with changes to the law, strengthened health care systems, and public information campaigns, more people will accept the gift of organ donation.”
The latest figures show that as of 30 September 2021, there were 134 people waiting for an organ transplant in Northern Ireland, of which 15 were waiting for a new heart. Last year, 11 people died in Northern Ireland while waiting for an organ transplant.
Standardization of organ donation
Daithi Mac Gavan, from West Belfast, was born with Hypoplastic Left Heart Syndrome, meaning he only has half a functioning heart. The four-year-old has been waiting for a new heart for more than three years. His parents, Martin and Seph, and their family are leading the local campaign to change the law.
Martin said:
“On behalf of my family and the Donate4Dáithí campaign, I am delighted to have been given the opportunity to give evidence to the Health Board on a topic that is very dear to us. We are fully committed to the soft opt-out introduction campaign and would like to take this opportunity to thank the Health Board for their active role in the campaign so far.”
“Our biggest obstacle at this stage is time and we cannot afford any further delays. We encourage all politicians to give this Bill the best possible chance of becoming law within their term and we thank them for their work so far.”
“For us it's a no-brainer – our health service, our specialist nurses, the public and above all, all those waiting for the gift of life are ready. Daithi has been waiting for the gift of a new heart for over three years and it would be a shame if there was a change in the law that could help everyone who is waiting.
“Our ultimate goal in our campaign is to make organ donation completely normal across society and this change in the law is a huge step in that direction.”
What it means to receive a heart transplant
