Belfast Telegraph

Monday 22 September 2014

Organ donor Bill: Jo-Anne Dobson pressing for a new law for over a year - but suddenly it may be sunk by rival

Jo-Anne Dobson
Jo-Anne Dobson
'Suspicious': Joe Brolly

A proposed new law designed to boost organ donations and save lives in Northern Ireland could be destroyed after a DUP MLA tabled a rival Bill, it has been claimed.

As hundreds of people across the province wait for vital transplants, concerns have been raised that moves to improve the donor system have now been thrown into uncertainty.

MLA Alastair Ross confirmed this week he will be bringing forward a new Private Member's Bill to the Assembly on organ donation.

This comes despite Ulster Unionist MLA Jo-Anne Dobson lobbying for over a year for a new law to adopt a 'soft opt-out system'.

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.

Mr Ross who will bring forward his proposals by the end of January denied the move was political.

Instead he wanted an 'opt-in system' via drivers' licences after disagreeing with her proposals on ethical grounds.

And last night First Minister Peter Robinson said he supports both bills as they would increase the level of organ donation.

But campaigners say the issue should not become a political football, adding that a second Bill could lead to public confusion.

Former GAA star Joe Brolly said the timing of the introduction of the proposed amendment was "suspicious".

"It is really important that there is no politicking with this," he said.

"While I support anything that might be inclined to increase awareness, the fact that it is being done when it is being done looks very much as though it is designed to destroy Jo-Anne Dobson's Bill which is going to save a lot of lives.

"It looks like it is being timed for that reason – deliberately a 'missile'. The timing of it is obviously very suspicious."

The new law spearheaded by Ms Dobson would mean that all adults will be considered as eligible for organ donation unless they chose to opt out. Anyone's decision to opt out would also be kept "absolutely confidential".

Mr Ross, a member of the All Party Group on Organ Donation, said he agreed on many issues with Ms Dobson but not the new system, which he described as "presumed consent".

"There is one fundamental issue that we disagree on, namely a move towards a system of 'presumed consent' for adults," he said.

He has proposed to amend the Road Traffic legislation. This would have drivers state their preference of becoming a donor or not when applying for a new licence.

Mr Ross said he believes this is more "ethically sound".

"This has nothing to do with party politics, rather it is a fundamental disagreement about Ms Dobson's proposals to introduce a system of presumed consent in Northern Ireland, a system that treats every adult as a willing organ donor even if they have never stated their individual preference," he said.

But Mr Brolly, who donated his kidney to his friend Shane Finnegan in 2012, described him as "scaremongering".

"Nothing is presumed. That is scaremongering, that the state is going to take your organs which is a load of nonsense," he said.

"The opt-out (system) is aspirational because the family still has to make the final decision and it is a very rigorous consent. The organs will not be taken and cannot be taken as a matter of law unless there is that rigorous consent – nothing is presumed."

He said 80% of European societies use an opt-out system where the families make the final decision.

"It has been shown to be the best possible system because organ donation has to be a gift for the family. Consent can never be presumed," he said.

Mr Ross insisted his move would not in any way prevent Ms Dobson from introducing her own Bill.

Ms Dobson said she was "baffled and disappointed" by his actions, but is determined her Bill will not be affected.

"We need one clear message on organ donation and I think this would confuse the public on this issue," she said.

"It won't impact me. I have strong cross-party support for this and the backing of the charities and more importantly the support of the general public."

Mr Robinson said he was "happy to support Joanne and Alastair's efforts for this great cause. Giving an organ to someone is a really special act".

Son's life-saving operation inspired drive for change

It was the birth of her youngest son Mark that led to Jo-Anne Dobson beginning her fight not only to raise awareness of organ donation, but to change the law.

When he was five weeks' old, the UUP MLA's son was diagnosed with kidney failure.

His condition – severe reflux– meant that both of his kidneys were only working at 19%.

His illness meant he spent the first years of his life at the Royal Victoria Hospital for Sick Children.

When he turned 13, his kidneys started to shut down and in April 2008, he was placed on the transplant list.

The moment of hope came in February 2009, when he got that important call about his life-saving operation.

Before he underwent the surgery, Jo-Anne explained the impact living with kidney failure had on her son – now 20.

"Mark was a shadow of himself before his transplant," she said.

"He couldn't walk, he could hardly move – he was basically dying in front of us."

Since then, the Upper Bann MLA has campaigned tirelessly to raise awareness of organ donation and has focused on improving donor rates in Northern Ireland.

More than 200 people are currently waiting in Northern Ireland for an organ transplant.

In December 2012, Jo-Anne tabled a Private Member's Bill at the Northern Ireland Assembly to change the existing Organ Donation Laws in Northern Ireland.

Then in June 2013, the process moved forward when a consultation proposing a soft opt-out system was launched.

The proposed change would mean everyone is regarded to have given consent to be an organ donor after death unless they state otherwise and 'opt out'.

However, family consent would still be needed before a final decision would be granted.

Wales has already passed legislation to adopt the new system from 2015 onwards.

"I know from my son's experience, his life just transformed when you get that call," she said.

"That's why I campaigned for the Private Member's Bill to change the law and by this simple change in the law, it means you are automatically on the list unless you chose to opt out.

"But family consent is at the heart of it; if your family decide they don't want to, their decision would not be overruled.

"Remember, 15 people die waiting on a transplant. My son, Mark, is one of the lucky ones, but imagine there were more lucky ones – that everyone had that chance for a new life."

Our views: two people who know what the giving and receiving of organs really means offer their opinions on the clash of proposals

Stephen Carter (40) from Glengormley made the decision to donate his wife's organs after she died from a brain haemorrhage in 2009. Her organs saved five other lives.

"For someone to say they want to do something different to conflict with what Joanne has proposed is worrying, I think.

"Will this take more time? Will this second Bill confuse people?

"Organ donation is about saving lives, it shouldn't be overshadowed by politics.

"I've been asked: what if the law had been changed when I made the decision about Denise – would it have made that decision a bit easier? I think it would have. It would have made us have the talk beforehand about what we would do. We weren't on the register, so we didn't have the chance to speak about it. Bringing that law into effect is the best way to raise awareness.

"I had to lose my wife to go through the organ donation process. But to know she saved five lives has changed the grieving process. I'm proud of that.

"I don't know much about politics but at the end of the day, organ donation is about saving lives. It doesn't matter about background, religion or race. It is about saving human lives."

William Johnston (47) from Bangor just received a kidney transplant last week after waiting 16 years for a suitable organ.

"I think having this second amendment or Bill could confuse issues and the last thing we want is any more confusion among the general public. I just want whatever can raise awareness of organ donation.

"I sincerely hope the issue isn't being politicised. I know Jo-Anne is a mother of a transplant recipient and she has been through the organ donation journey too.

"For it to become a Bill, some MLA had to stand up, put their head above the parapet and say: 'I will crusade for organ donation'.

"I'm sure Alastair Ross is a very genuine man, and genuine with his principles, but as far as I'm concerned, my support goes with anything that is going to stimulate conversation about organ donation and I think Jo-Anne's Bill has got more potential to act as a catalyst rather than the proposal that Alastair Ross is making.

"But all the politicians should be working together on this to raise awareness and improve donor rates as a team."

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