Families encouraged to talk about organ donation and giving the gift of life to others

On Discussion Day, the Public Health Agency (PHA) encourages everyone to think about organ donation, register a decision on the NHS Organ Donor Register, and to talk about that decision with loved ones.

As Christmas approaches, most of us are working through our shopping gift lists. But there’s one very special gift that we could all consider – the ‘gift of life’ through organ donation. Each year, hundreds of lives are saved and transformed by organ and tissue donation and transplantation.

Organ donation is a most precious gift, and the selfless act of donors and their families is at the heart of organ donation. Last year in Northern Ireland, 55 amazing families supported the gift of organ donation, which enabled 127 life-saving transplants across the UK. And in the first six months of this year (April-September), 45 people have benefitted from a deceased organ transplant in Northern Ireland. Overall, 100 lives here were saved and transformed through deceased organ donation last year, and 61 through living donation.

This is testament to the positive attitudes of people here when it comes to organ donation. We know that 90% of people support organ donation, however only 52% have registered their decision on the NHS Organ Donor Register. So, with many more people willing to consider donating an organ than are actually registered as donors, initiatives such as Organ Donation Discussion Day will help put that conversation front and centre.

These life-saving conversations are so important as there are around 146 people currently awaiting a transplant – essentially waiting for the call to give them ‘the gift of life’. Sadly, last year in Northern Ireland 15 people died awaiting a transplant.

Little Ellie McConville from Dundonald and her family have first-hand experience of this gift of life and what it means.

Ellie had a life-saving liver transplant at just 10-months-old and will shortly be celebrating her two-year transplant anniversary this month.

Her mum Ashleigh told us about their experience: “In June 2020, when she was 12 weeks old Ellie was diagnosed with Biliary Atresia, a rare liver condition, and we were told she would need a transplant. In October, she was able to be placed on the transplant waiting list. It was December 22, only a few days before Ellie’s first Christmas, when the call came at 3am to say there was a possible liver for Ellie and to be on the 6am flight from Belfast to Birmingham. I’ll always remember having to wake Ellie’s big brother Harry to say goodbye and tell him myself and Ellie wouldn’t be there for Christmas, and him saying he didn’t mind as long as Ellie got her liver.

“After eight days Ellie was recovered enough to travel home and we had our own Christmas at the start of January. Since then, she has gone from strength-to-strength. We have had a few bumps along the way but she is now a healthy, cheeky, nearly three-year-old who is living her best life thanks to the kindness of a complete stranger and their family agreeing to organ donation.

“Being on the organ donor register myself, I always thought I would be donating my organs when I passed away rather than relying on someone else to keep my daughter alive. It is really difficult to put into words the gratitude we have for her donor and their family for agreeing to organ donation in such difficult times.”

Catherine Coyle, organ donation lead at Public Health Agency (PHA) added: “Signing the Organ Donor Register and ensuring that loved ones are aware of your decision will leave your family certain about what you would have wanted should the worst happen. Families will always be involved before organ donation goes ahead which is why letting them know your decision is so important. Only half of families agree to donation if they don’t know their loved one’s decision, but this rises to nine out of ten if they know their loved one wanted to save lives through donation. On Organ Donation Discussion Day, we encourage everyone to have this conversation.”

In spring next year, the law around organ donation in Northern Ireland will change to an opt-out system.

‘Dáithí’s Law’, named after five-year-old organ donation campaigner Dáithí Mac Gabhann who has been awaiting the gift of a new heart for over four years, will mean in the event that organ donation is a possibility after you die, it will be considered that all adults agree to being an organ donor unless they choose to opt out or are in an excluded group.

The best way to opt out is by registering a decision not to donate on the NHS Organ Donor Register.

Even when Dáithí’s Law comes into effect next spring, the need for family conversation and awareness of each other’s decision remains vital, as families will continue to be involved before organ donation goes ahead.

As organ and tissue donation and transplantation saves and transforms hundreds of lives each year, the new law will help more people save more lives by making it easier for those who support organ donation to say ‘yes’ to giving the ‘gift of life’.

As only 1% of people will die in circumstances where donation is possible, generally in hospital on a ventilator, there is a shortage of organs, meaning every donation is precious.

You can continue to register an opt-in decision on the NHS Organ Donor Register up to and after the law change next spring. By doing so, you can proactively show your support for organ donation, giving loved ones the confidence to support your decision.