NI family in plea for changes to organ donation after father dies on waiting list

Andrew Duncan, who suffered from dilated cardiomyopathy, died in 2014 at the age of 38 after waiting in vain for 15 years for a life-saving transplant.

In Northern Ireland donors must opt-in to the system so that their organs can be donated. Elsewhere in the UK people are opted in automatically but can opt-out.

This has led to a smaller donor pool in the Province. This exacerbates a problem that exists everywhere in which organs, even when they become available, cannot always be transplanted.

Andrew’s daughter Aimee said: “Daddy got a call on Easter Sunday one year for a heart. He went to the hospital, they harvested it, but it wasn’t suitable so he had to go home again.”

Both Andrew’s daughter Aimee, 20, and son Robbie, 17, have the same recessive gene as they father.

Aimee said: “There is a 50/50 chance we could develop the same disease as Daddy and require a heart transplant in the future. We are taking preventative medication and living as healthy a lifestyle as we can. Having an opt-out system is vital. As a family we try and do our best to fight for people to know the importance of organ donation.”

Aimee’s father had been playing the bagpipes since his teens and had been a member of Bready Ulster-Scots Pipe Band. Both Aimee and Robbie had also been in the band.

Aimee said: “Whenever he got sick he didn’t have the energy to blow enough to practice (using an item for the bagpipes known as a chanter) so Mummy got him an electric one that you don’t have to blow into so he could still practice.”

She said: “He did not want to leave us, his mind was still fighting to stay with us when his body couldn’t fight any more.”

She called for an urgent change to the donation system in Northern Ireland.

Almost seven out of ten people in the Province are in favour of introducing a new soft opt-out system for organ donation, according to a poll by British Heart Foundation Northern Ireland (BHF NI).

The Duncan family were among three local families to make short films for BHF NI to mark Organ Donation Week.

Head of BHF NI Fearghal McKinney said: “Currently, there is an opt-in basis for consent for organ donation here. Organ donation registrations are increasing but sadly there is still a shortage of donors.

“Latest figures shows that as of June 30 there were 133 people waiting for an organ transplant in Northern Ireland – 16 of them waiting on a new heart. We want to see a soft opt-out system introduced here in line with Wales, Scotland and England. The cabinet in the Republic of Ireland has approved the drafting of legislation that would introduce a soft opt-out system. So once again the people here are losing out.

“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.”