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Anger and suspicion at organ donor bill delay: 15 will die as we wait


Catherine McCarley, a patient to be assessed to donate an organ at Belfast City Hospital waiting pictured last year, meeting with Health Minister Edwin Poots, campaigner Joe Brolly and First Ministers Peter Robinson and Martin McGuinness

Catherine McCarley, a patient to be assessed to donate an organ at Belfast City Hospital waiting pictured last year, meeting with Health Minister Edwin Poots, campaigner Joe Brolly and First Ministers Peter Robinson and Martin McGuinness

Catherine McCarley, a patient to be assessed to donate an organ at Belfast City Hospital waiting pictured last year, meeting with Health Minister Edwin Poots, campaigner Joe Brolly and First Ministers Peter Robinson and Martin McGuinness

Fears have been voiced that 15 people waiting for life-saving organ donations will die in the next 12 months after Health Minister Edwin Poots announced a further delay in a decision on new legislation in Northern Ireland.

The concern comes amid speculation of "politicking" by the DUP, and claims UUP MLA Jo-Anne Dobson, who is proposing a change in the law, is "simply too popular for other parties".

In a statement to the Assembly yesterday, Mr Poots said a second public consultation was needed before he announced any change to current legislation.

That process is now expected to take a further 12 months.

The minister said he still needed more evidence, describing it as a "very emotive" subject.

A total of 123 transplants took place in 2012/13 in Northern Ireland, and 190 people were on the transplant waiting list as of March 2013.

About 15 people die each year while waiting for a transplant.

Mrs Dobson, who is proposing a 'soft' opt-out option, criticised the move saying it had now been "kicked into touch".

"He had the opportunity of doing the right thing and he has batted it away for another year," she said.

"What he is doing is another survey. It will probably be this time next year before we get the results. In that year, 15 more local people will have died.

"I was hoping he was doing the right thing for Northern Ireland. but hopes have been dashed."

Mr Poots strongly denied a delay was based on ethical grounds adding a change was "not a decision to be taken lightly".

"I'm not interested in kicking this into touch. I'm interested in getting the best results," he told the Assembly.

Mrs Dobson's Private Member's Bill would mean that organs are automatically donated unless an individual has opted out.

However, the legislation she was proposing would mean families would still have to be consulted before any organs are donated.

Her son is a transplant recipient. Ms Dobson tabled the Private Member's Bill in December 2012.

It is now at a drafting stage and was scheduled to be brought before the Assembly this spring.

But she believed the "might" of the Executive support would have fast-tracked the change in legislation and save more lives.

Joe Brolly, a former Derry GAA player who donated a kidney to his friend, said while the debate sparked people to discuss the issue of organ donation the delay was disappointing.

"There is no doubt that it is disappointing and no doubt that there is a real suspicion that this is politicking," he said.

"In February 2013, Edwin Poots, Peter Robinson and Martin McGuinness sat together on 11th floor of the City Hospital and said they were going to move towards soft opt-out," he said.

"So we are now lagging behind the Republic because we thought we would be ahead of them.

"They are in the process of legislating for soft opt-out and their figures are starting to accelerate."

Mr Brolly donated his kidney to Shane Finnegan, but it was removed nine days later after medical complications.

He said the public needed to be aware family consent was at the basis of the proposed UUP Private Member's Bill.

"People should be reassured that this (soft opt-out) is based on family consent, and it is the only way that it can work."

Ulster Unionist leader Mike Nesbitt said: "I don't think the minister has fully explained the change of position," he said.

"And if he wants to avoid being accused of politicking he needs to say more. It raises questions about whether this is simply Jo-Anne being too popular for some other parties in government.

"She has certainly, since she has been elected, been a hugely successful and extremely popular constituency MLA, and she has hit a note with the public in terms of her proposal on organ donation."

But DUP MLA Alastair Ross said raised concerns over consent cannot be ignored.

Mr Ross has brought forward his own bill that would allow people to 'opt in' by signing their driving licences.

He said: "My preference is to maintain the voluntary 'opt-in' system. I do not believe it is right for the Assembly to legislate that every adult is automatically presumed to be a willing organ donor without ever specifically asking them," he said.

The announcement by Mr Poots comes as the Public Health Agency today begins a public information campaign aimed at encouraging people to let their family know if they wish to donate their organs at the end of their life.

Timeline so far

December 2012 UUP MLA Jo-Anne Dobson tables a Private Member's Bill at the Northern Ireland Assembly to change the existing Organ Donation Laws in Northern Ireland.

June 2013 The process moves forward when a consultation proposing a soft opt-out system is launched.

September 2013 It is announced that presumed consent for organ donations will start in December 2015 in Wales following a two-year information campaign.

October 2013 Results of consultation presented to the Assembly by Jo-Anne Dobson show that, from 1,366 responses, 82% agree with a change in the law and a move to a new soft opt-out system.

October 2013 A major survey by the Public Health Agency finds that 84% of respondents support the idea of organ donation. The survey also finds:

*More than a third (36%) of respondents are not aware of the Organ Donor Register;

*78% of respondents say they would be willing to accept an organ if they need one;

*78% of respondents agree that it is important to discuss your donation wishes with your family and/or friends. However, only 38% have done so.

January 2014 DUP MLA Alastair Ross confirms he will be bringing forward a new Private Member's Bill to the Assembly on organ donation. He wants an 'opt-in system' via drivers' licences after disagreeing with Jo-Anne Dobson's proposals on ethical grounds.

February 2014 Health Minister Edwin Poots announces further public consultation and evidence is needed before the Executive supports the soft opt-out system.

CASE STUDY: It's so vital families talk about this

Steven Carter (40) from Glengormley had to make the decision to donate his wife's organs after she died from a brain haemorrhage in 2009. Her organs saved five other people. He said:

"There are a lot of campaigns to try and promote awareness of organ donation. If the law came through obviously people will be talking about it a lot more.

"We have to try and get that law through, so any further delay is disappointing.

"It is down to trying to save lives and creating awareness and helping people to try and understand what the organ donation register is about. If the law is going to be delayed, that makes it more difficult.

"It is so important for families to have a conversation about organ donation. In my circumstances I didn't get that chance to speak to Denise about it. It was a decision I had to make, and it was a hard decision.

"I feel it would have been a lot easier if we had that conversation before. It is a hard conversation to actually have, but it needs to come up. Once it is done you remember it always."

Belfast Telegraph