BHF comment
No time to lose in change to organ donation legislation in Northern Ireland
British Heart Foundation Northern Ireland (BHF NI) and the Donate4Dáithí campaign have urged the Stormont Health Committee not to lose momentum in the plans to change organ donation legislation.
Head of BHF Northern Ireland Fearghal McKinney and the family campaigners gave evidence to the NI Assembly health committee on Thursday 11 November. We warned legislators there is “no time to be lose” in ensuring the Organ and Tissue Donation (Deemed Consent) Bill is in law by the end of this mandate.
The First and deputy First Ministers gave approval for the legislation to proceed earlier this year and the Health Minister Robin Swann introduced the Bill to the Assembly in June. The Bill is now at committee hearing stage where assembly members have been hearing evidence from experts and campaigners on the proposed legislative change.
Northern Ireland is the only part of the UK without a soft opt-out system of organ donation. Under the proposed legislation, everyone would be considered as willing to donate their organs unless they have formally opted out. The family would continue to be consulted about donation as well as considerations around faith and beliefs.
No time to lose
Giving evidence to the Health Committee Head of BHF NI Fearghal McKinney commended the Stormont Assembly on the legislative process so far but said there is no time to lose in ensuring the Bill is passed before the next election:
“We must not lose momentum on making this change as it is too important. But even with the fantastic political will we have seen so far, time is running out to get the legislative process completed in this mandate of the Assembly,” he said.
“Three weeks of Christmas recess is scheduled for the Assembly and purdah begins the last week of March 2022, with the election on or before 5 May 2022. We commend our legislators for their robust scrutiny of the Bill and we welcome the opportunity to present to the Health Committee but we also have to bear in mind that time is not on our side.
“We have a great opportunity to change the lives of those who are on the transplant waiting list. We have seen the difference the change has made in Wales since 2015, where both the consent rate and donation rate has increased.
“We must get this important piece of legislation over the line in this Assembly mandate and we will do all we can to support legislators. One person’s decision to donate their organs is a gift that can save and improve the lives of up to nine other people. We believe a change in the legislation, along with a strengthened health system and a public information campaign will lead to more people receiving the gift of a donated organ.”
Latest figures show as of 30 September 2021 there were 134 people waiting for an organ transplant in Northern Ireland, 15 of them waiting on a new heart. Last year 11 people in Northern Ireland died while awaiting an organ transplant.
Normalising organ donation
Dáithí Mac Gabhann from West Belfast was born with Hypoplastic Left Heart Syndrome, which essentially means he only has half a working heart. The four year old has been waiting on the gift of a new heart for over three years. His parents Máirtín and Seph and their families have been leading campaigners for a change in the law here.
Máirtín said:
“On behalf of my family and the Donate4Dáithí campaign, I am delighted to be given the opportunity to give evidence to the health committee on a topic that is very close to our hearts. We have given our own heart and soul to the campaign for the introduction of soft opt-out and want to take this opportunity to thank the health committee for their positive role to date in the campaign.
“The biggest obstacle for us at this stage is time and we can’t afford any more delays. We encourage all of our politicians to make sure this bill has the best chance of going through during this mandate and thank them too for their work to date.
“For us, it can only be explained as a no brainer. Our health service is ready, our specialist nurses are ready, the public is ready, and more importantly all those on waiting lists for the gift of life are ready. Dáithí has been waiting on the gift of a new heart for over three years, and when there is a change of law that could help all those people waiting, then it just makes sense.
“The end goal of our campaign is to totally normalise organ donation is society and this change of law is a big step in that direction. “