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MLA presents Bill to change organ donation opt out rules in Northern Ireland

By Joanne Sweeney

Published 08/09/2015

UUP’s Jo-Anne Dobson with her son Mark, who received a transplant, along with former GAA player and organ donor Joe Brolly and her Bill at Stormont yesterday
UUP’s Jo-Anne Dobson with her son Mark, who received a transplant, along with former GAA player and organ donor Joe Brolly and her Bill at Stormont yesterday

People in Northern Ireland will be assumed to be organ donors unless they specifically rule themselves out if a new Bill just introduced at Stormont becomes law.

Ulster Unionist Jo-Anne Dobson submitted her Private Member's Bill yesterday which could revolutionise organ transplants here if passed.

The Bill aims to modernise local laws and to give Northern Ireland a new 'soft opt-out system'.

It would bring Northern Ireland into line with the changes taking place in Wales later this year and which are also progressing in Scotland.

If passed, it would mean that unless someone has specifically listed themselves as not wanting to donate their organs after death, it will be assumed that they consent.

According to the Public Health Agency (PHA), 200 patients in Northern Ireland need a transplant each year and approximately 15 people die each year here waiting on organ donations.

PHA chief executive Dr Eddie Rooney urged people to have a discussion with their loved ones about their attitude to organ donation over the next week.

Ms Dobson has been working on the drafting of the Bill for the last three years. The mother of a kidney transplant recipient, the Upper Bann MLA formally submitted her Bill as National Transplant Week got under way.

Ms Dobson said: "I was delighted to once again be flanked by the organ donation family of charity members and campaigners at Stormont today as I submitted my Bill to the Assembly Speaker.

"It was very fitting that this coincided with the start of National Transplant Week, a week in which we think about those who have received the gift of life and also those families who, at a time of grief, have made the decision to donate their loved ones organs.

"Last week the Department of Health revealed support was increasing for the soft opt-out movement and I pay particular tribute to all those charities and groups who have been spearheading the campaign here in Northern Ireland.  Together our ultimate aim is to save lives by changing the law and making organ donation the norm in our society.

"I look forward to progressing the Bill through its various stages in the Chamber of the Assembly and am happy to meet with any Member to discuss the Bill or any suggested amendments.

"Organ donation is an issue which transcends natural political divides and I am delighted with the support which my Bill has been receiving across the local political parties.

"However, I was disappointed by the statement from the Health Minister Simon Hamilton last week in which he announced his ‘wait and see’ approach to changing the law.  This is disappointing as no one would be more delighted than I if the Health Minister were to announce that he was tasking his Department with bringing forward soft opt-out legislation as was suggested by his predecessor back in 2013."

While she said that she was delighted to have finally reached this stage, Ms Dobson was disappointed at the recent "wait and see" attitude expressed by Health Minister Simon Hamilton.

"I will not be found to be wanting in pushing this through," she said. "Organ donation is an issue which transcends natural political divides and I am delighted with the support which my Bill has been receiving across the local political parties."

GAA pundit and kidney donor Joe Brolly was at Stormont to help publicise the submission. He said: "What we have learnt over the last three years is that the organ donation system here is confusing.

"It doesn't do what it says it does. We have a 50% refusal rate even though society is massively supportive of organ donation. Yet 68% of donations here come from people who are not on the organ donation register."

Ms Dobson and Mr Brolly urged everyone to discuss their wishes with their family about organ donation in the event of their death. The British Heart Foundation NI said there were currently 10 people here waiting on a heart transplant and one for a heart and lung transplant and there were no transplants undertaken in 2014-15.

Its Northern Ireland head Jayne Murray welcomed the submission and said: "We must take a fresh approach to help increase the number of organ donors and ensure more people get the transplant they so desperately need."

The British Heart Foundation (BHF) Northern Ireland welcomed the submission of the Bill.

Jayne Murray head of BHF Northern Ireland said: "We welcome the submission of the Private Members Bill that aims to change the law on organ donation.   For many critically ill heart patients a transplant can offer the best chance of long term survival but there is a desperate shortage of registered donors.

"Tragically the number of heart donors has not kept pace with the number of people waiting for a heart transplant. There are currently 10 people in Northern Ireland on the waiting list for a heart transplant and one person waiting for a heart and lung transplant. According to latest NHS transplant statistics no one from Northern Ireland has received a heart transplant in the past year.

"We must take a fresh approach to help increase the number of organ donors and ensure more people get the transplant they so desperately need. That’s why we’re calling for Northern Ireland to follow Wales’ lead and change the law to implement a soft ‘opt-out’ system of organ donation. This would mean everyone is assumed to want to donate their organs unless they or their family say otherwise."

Ronnie: ‘There is nothing to giving someone a kidney’

Ronnie White and his wife Ruth are backing the proposed ‘soft opt-out’ organ donation Bill for Northern Ireland.

The retired Belfast couple became part of a historic six-way ‘domino’ donation in January, 2010.

Ronnie (68) donated his kidney to a stranger in Coventry, whose partner donated a kidney to a patient in Portsmouth. In turn, the partner of the Portsmouth patient donated a kidney to Ruth, now aged 71.

In just six hours, three people’s lives were transformed in a complex operation organised and brilliantly carried out at Belfast City Hospital’s renal department.

“There is really nothing to giving one of your kidneys to someone,” Ronnie said.

“I underwent my operation at 9am and then at 3pm Ruth went under hers. Three people were able to live their lives once more without dialysis.

“Before the transplant Ruth was on dialysis and she was getting very run-down.

“We weren’t able to go away without making plans for her to get her dialysis wherever we were, but we don’t need to do that anymore.”

The parents to three adult children and grandparents to four grandchildren are thankful for Ruth’s health.

However, as her kidney was not an exact match, she is still prone to infection due to her immunity being low.

It was the unexpected death of the couple’s first-born son that alert them to the fact that June had polycystic kidney disease. Ronnie said: “June was able to manage her condition so well that she only had to have dialysis two-and-a-half years before she got her kidney but as a school teacher she had to take early retirement.”

Nathan: ‘I had been feeling nauseous and not at all well’

Nathan Fairbairn (34) from Rostrevor, Co Down, has just become a father to a baby girl for the first time.

He has his mother Catherine to thank for giving him the gift of life for a second time as she gave one of her kidneys to him in a live donation in 2004.

“Initially I was very opposed to my mother giving me a kidney but it turned out that she was a perfect match,” said Nathan.

“She told me that I would understand why she was doing it and was happy to do it when I had kids of my own — and she was right.

“I found out my kidney function was only 4% after being hospitalised on Christmas Eve in 2004 when I came home from Cardiff where I was living and working at the time.

“For a couple of months I had been feeling really nauseous and not at all well. To be honest, I was worried there was something seriously wrong with me.

“I went to see the doctor and ended up in Belfast City Hospital that night as it was found that I had Goodpasture’s disease.”

Nathan’s life changed from being a totally independent one to his having to leave work and return to live with his parents, Catherine and Jim.

“Unfortunately, I still require another kidney transplant in a year’s time,” Nathan added.

Bob: ‘A stranger gave me the gift of life’

Aged 80, Belfast man Bob Arnott MBE is the ninth oldest living kidney recipient patient in the world.

He has enjoyed nearly 45 years of happy and fulfilled life with his wife Norma and three sons from a kidney he received on January 31, 1971 from a person who had died — known as a cadaver donation.

Bob, who is a former chair of the NI Kidney Research Fund, says that the family of a Fulham man who donated his kidney to him “really did give me the gift of life”.

He said: “I was 35 and a married man with children when I had my kidney transplant. I had been troubled with high blood pressure and it started to really damage my kidneys.

“I lost a lot of weight and ended up having to walk with a stick. But looking back on it now, it could have been related to a severe throat infection I had at 16.

“Before the transplant back in those days, I would have been on dialysis for 14 hours at a time every Wednesday and Saturday. I managed to hold down my job as a development engineer in Lisburn due to a sympathetic employer. So while I was able to work, my job would have been there for me.”

Bob is backing the soft opt-in organ donation Bill but says he feels that the donation of any organ should be viewed as the gift of life that it is.

“I’ve had a life given to me by some stranger in Fulham in London and the expertise of the medical staff at the Belfast City Hospital.

“I support anything to increase organ donation, but I feel that actual process of organ donation should always be recognised as the gift of life that it really is and we should never lose sight of that.”

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