Changing the law on organ donation…

There were cheers and tears in the Northern Ireland Assembly rooms in Stormont last week.

Cheers because on Tuesday 8th February, the Organ and Tissue Donation (deemed consent) Bill was passed by the Assembly.  It was prepared and taken through the intense processes of Assembly debates and Committee scrutiny in 18 months, with no amendments necessary.  Even with “spirited debate” along the way, there were no dissenting voices in the final plenary presentations.

Daithi's Law

The Bill will be supported by a full process of public information and promotion before (and after) the change becomes law in spring 2023.

This brings Northern Ireland in line with legislation across the rest of the UK.  We understand that the health minister in the Republic of Ireland is now also looking at the process of considering the introduction of similar legislation.

Good reason for cheers in Stormont.

And for tears, too.  However measured and gracious the speeches in the Assembly, and they were, it was an emotional day for many.  Far more than the letter of a new law, raising the profile of organ donation can make the most profound difference to those who are waiting on the list to see if they can be given another chance of life.

In Stormont’s Long Gallery, just along the corridors from the Assembly Chamber, were thirty or more guests the Minister for Health had invited from organisations, campaigns, and support groups to watch the Plenary and to celebrate its positive outcome (not really in doubt by that stage.)

Rachel attended on behalf of Live Loudly Donate Proudly.  “It was great to see people from across the spectrum of organ donation involvement together in one place for something so hopeful.  Specialist nurses for organ donation, representatives from the NHSBT, Health Trust, British Heart Foundation, Children’s Heartbeat Trust, Kidney Research, the Royal Victoria Hospital Liver Support Group and other groups and individuals and committed campaigners, and, of course, Dáithí.  A proud moment to be there.”

Yes, in the middle of them all was Dáithí Mac Gabhann, a five-year old boy who has been on a waiting list for a heart transplant for over three years.  Dáithí’s family, with Dáithí a vocal and lead participant, has campaigned and lobbied hard for this change in law, recruiting the support of all the politicians they could reach along the way.  They have also connected well beyond the politicians, enlisting colourful support from the Belfast Giants (Ice Hockey team) and many others in the NI sports world and beyond.  The new law honours their impact on the process and will be commonly known as Dáithí’s Law.

The drive to raise the profile of organ, blood, and tissue donation, is frequently championed and inspired by those who have received transplants themselves and know the immeasurable joy and treasure of renewed life.

And by live donors and families of deceased donors who also understand the power that their gift for another can have in their own lives.

And families and friends who, in immense gratitude for extra years of life with their loved one through the miracles of organ donation, raise their voices gladly to encourage us all to make that same precious gift possible for someone else.

Some of the brightest champions were no longer able to be physically present in the room to celebrate the moment.  Deeply missed, but not missing…

There were bound to be tears.

Live Loudly Donate Proudly will continue encouraging informed conversations with our families and friends.  Irrespective of the system, opt-in or opt-out, our families, (or a friend of long-standing if there is no family), will have the last word.  Clinicians will not proceed with organ donation without this agreement.  It is still as important as ever that we know what our loved ones’ decisions would be, whatever they are.

And it will still be necessary to tackle the myths…

But that’s for later.  For today, let’s celebrate and be grateful for the gift.  The gift from the Assembly.  And the gift, and it always will  be a gift, of life-saving organs, blood or tissue for another.  A gift of love, as precious as anything ever given on St Valentine’s Day.