Belfast Telegraph

Saturday 26 July 2014

Jo-Anne Dobson: 'When you nearly lose a child, it shapes the person you are'

Speaking out: Jo-Anne Dobson

The Ulster Unionist MLA talks to Amanda Ferguson about being a woman in politics, the stalemate in the Haass talks, her party's seemingly waning fortunes, and why her organ donation crusade is such personal one

Q How did you get in to politics?

A I have been an MLA since 2011 and, before that, I was an Ulster Unionist councillor and I worked for Jim Nicholson MEP. I managed the European office in Belfast and, prior to that, I managed his European election campaign in 2009. Before that my son Mark was my main focus, because he was ill waiting on a transplant.

My mum has been a member of the Ulster Unionist Party for many years and I got involved, but behind the scenes – canvassing, knocking doors, planning campaigns and things.

It wasn't until Mark had his transplant that I thought: 'Well, this is something we have waited for his whole life, maybe now'.

Mark always knew I was interested in politics and was going to take time to follow my own dream and see if I can make it happen.

When you have experienced nearly losing your child, it shapes the person you are. It certainly shapes how you view things. How you view your work. How you view the world, in essence.

Q What was your motivation to get to Stormont?

A I have been everywhere with the Northern Ireland Kidney Patients' Association and Northern Ireland Kidney Research Fund.

I have fundraised, I have done the awareness campaigns, I have been organising the different events behind the scenes for 20 years since Mark was five weeks old.

I chair the all-party group on organ donation here at Stormont. I have been working for 20 years, so being elected to Stormont afforded me the opportunity to take, I suppose, the knowledge, and knowing there is huge public support out there for organ donation.

Q What would you say to your critics, who accuse you of using your femininity to advance your career?

A I have yet to meet anyone who has accused me of such. However, I have spoken at length, both in the Assembly chamber and outside, about the promotion of women into roles in politics and public life. I also take an active role in bringing forward young women by mentoring and encouraging students through work-shadowing opportunities.

Q How did the Ulster Unionist Party go from saying the Haass process was "90% there" to pulling out of the talks?

A The party's position on Haass has been clearly laid out by the party leader (Mike Nesbitt) and, indeed, last week we published our proposals regarding flags, parades and dealing with the past, which is a positive step forward to addressing these issues. We are not content with the status quo.

Q Why do you think the UUP is trailing the DUP so badly in the polls? Is there even a role for the Ulster Unionist Party anymore?

A The Ulster Unionist Party is currently the second-largest unionist party in Northern Ireland.

Our MEP Jim Nicholson was the highest-polling unionist in the 2009 European election and I am confident that he will further increase his vote in May's election.

I am also confident that we have an effective mix of both youth and experience to offer the electorate in our council candidates, who will present a strong voice across the chambers in the new 'super councils'.

Q You are the party's agriculture spokesperson. What are your three main goals for the Northern Ireland economy?

A We need to increase local employment opportunities by making Northern Ireland business-friendly by cutting through red tape, which is stifling economic recovery. We need to nurture small business incubation – this means a whole rethink around business rates and building control's attitude to small business. From little acorns...

Finally, I know only too well that our local agri-food industry has massive potential to lead our economic recovery.

But it's a sad indictment on the Executive that Deti and Dard have so far failed to financially support Going For Growth, the Agri-Food Strategy Board's action plan.

I want to see farmers and the wider industry receive the support they need to grow their sector and, therefore, the goals within the strategy fully-achieved and, indeed, exceeded.

Q How would you describe your relationship with Mike Nesbitt?

A I am delighted that my party leader – and, indeed, all the members of the Assembly group – have voluntarily decided to unanimously support my Private Member's Bill.

Q So, organ donation is your main focus now?

AThere is nothing like personal experience to shape the person you are. I went to the Speaker a year ago to see if there was any willingness (to move a Bill). There was no Programme for Government commitment on organ donation. The number of people who stop me and say: "You are the organ donation lady" and "Keep up the good work". Similarly, some people have said: "Why did this never happen before? Why has there been no willingness from the Executive to make it happen?" So, that is why I launched my Private Member's Bill.

Q How did you feel about DUP MLA Alistair Ross announcing his 'solo-run' at the Assembly on organ donation?

A Disappointed. Others can say what they want about it. I know my beliefs and where I come from.

Mark is 21 at the end of March. He was five weeks old when we were told our child was going into renal failure and needed a transplant.

So, I have over 20 years' experience with these charities, giving out the donor cards at shopping centres, everywhere.

I have been there, done that. I suddenly didn't decide: "Oh, I will pluck organ donation. That seems like a good one to run with."

Q What would you suggest the motivation is? Do you think it is an electoral thing?

A I couldn't possibly suggest that; it's for others to draw their conclusions. I would like to think people do things for the right reasons.

What, I suppose, annoys me the most about it is that it sends out mixed messages to the public. I did think and firmly believe that this is one issue we can all agree on at Stormont. I don't want it to be hampered by others trying to, if they are, playing politics.

Q Outline what you are aiming for and what you want the public to get behind?

A Family consent is at the heart of everything I do. If the family doesn't agree, it wouldn't happen.

I am trying to turn the current system, which is failing miserably, on its side. A total of 15 local people are dying every year waiting on an organ. I am proposing to go from the current system, where you sign up, to go for 'soft opt-out', which means you are automatically on the list unless you choose to opt out.

For the first time with my Bill, for the first time in law, your human rights will be strengthened, because, if you are opposed to organ donation and you opt out, no one can override those wishes. Currently, they could be under the current legislation.

But, ultimately, your family will have the final say. So, if you have opted in and you want to donate your organs and your family don't want to, it wouldn't take place.

You don't suddenly click your fingers and change it overnight and it becomes law, so it is a lead-in time with the campaign and that is why the likes of the Belfast Telegraph and others are so vital in keeping those stories alive.

Q What has been Mark's history?

A Mark was born in 1993. The health visitors kept saying he was just slower to thrive and it takes a wee bit longer for some kids. I knew the difference between my oldest son, Elliott. You know they are blooming immediately and Mark wasn't. I took him to the GP when he was five weeks old. My mum and I went. I will never forget it. He took one look at him and said: "Take him straight to Craigavon Hospital."

He was in Craigavon for two weeks initially, and then transferred to the Belfast Children's Hospital for four weeks.

They discovered he had a severe urine infection, but scans revealed that instead of the urine coming out normally from the body, Mark's urine was called severe reflux, bilateral reflux, which meant every time he passed urine it flowed straight up into his kidneys.

There were no valves to stop that. So, five weeks undiagnosed meant that his right kidney was gone completely and his left kidney was working 19%.

I am 48 now. I was 24 when Elliott was born and 27 when Mark was born. So to be told that your baby had no function is pretty daunting. Thus began the first two years of his life. We practically lived in the Children's Hospital. We were told that at some stage he would need a transplant.

Q How does that news hit you?

A It is pretty shocking to hear that your child will need a transplant. It's like you are holding your breath under water. Ask any parent of an ill child. You are focusing on the next set of blood results. Your life is really on hold.

Mark got out of hospital when he was two.

It was regular appointments, running to the GP with urine samples. Then he entered renal failure at 13. Another routine check when we were down at the Royal. They always do the bloods and we could see the kidney function was down and down and down.

The consultant called us in and said: "Is there any big holiday you would like to take? Now is the time to take it." I said: "Doctor, why are you saying that?" And she said: "Mark is in renal failure and will need a transplant in the next 18 months to two years. So, if you are planning a big holiday, take it now." And we did.

We did America and Canada, knowing that he was looking at a lifetime of dialysis, or a transplant.

So, he went on the transplant list at 14 and was 11 months on the list.

I was halfway through my tests to donate a kidney to him and Dr O'Connor – every time I see her at the Children's Hospital she says to this day – "You are still money in the bank for Mark", because, in all likelihood, because he was only 15 when he got his first transplant, he will need another one, maybe two.

So, she said to Mark: "You better keep in with your mum, because she will donate a kidney to you at some point in the future."

Q When did you get the call?

A We got the call when he was 15. It came after midnight on February 5, 2009. My husband John was sleeping when my phone rang and I thought I was dreaming. I was in shock.

The snow was horrendous. It took a long time to get down (to the hospital). We were stuck in Sprucefield for forever, listening to the radio. Finally, we got into the children's ward. They were starting to do Mark's bloods and getting him all prepared, but the news wasn't good because the kidney was still in Britain.

Belfast City Airport was closed, such was the severity of the weather.

I remember praying. Mark and I sitting praying, and John as well, praying that "please, please, please let the kidney get here".

There would come a point, if the airport hadn't opened, that they couldn't have got the kidney over and it would go to the next person on the list. To have your hopes dashed – I couldn't even contemplate it.

We finally heard at 4pm that the kidney had arrived. Mark's dad and I left him into theatre. Afterwards, John and I walked around. I howled like a baby.

Finally, at 5.30 in the morning, he was in intensive care. I do firmly believe God doesn't send you anything you can't cope with and Mark has coped so well. He was in and out of hospital 13 times. But he is a fighter.

Mark has been with me every single step of the way. Any time I am speaking on organ donation, or doing something in the chamber, all I need to do is look up and see him and realise this is the reason I am here and this is meant to be.

Q Joe Brolly, (the barrister and former GAA star who donated a kidney to someone he'd just met), has also been very vocal on the matter. What is your relationship like?

A Joe is great. That is why I say this is above politics. Ordinarily, you know, would Joe and I even meet? We are poles apart, but with the common goal of promoting organ donation. And that is what the public want to see. That is what the public believe in. I wish I had a pound for every time people say to me: "Why can't everyone get behind this?" And: "Get on with it. Get it done."

That is why I was so disappointed a few weeks ago with the Health Minister (Edwin Poots). To hear there will be another consultation that will take us to next year, it was so frustrating.

The First Minister and Deputy First Minster are both supporting soft opt-out, so why not do it? Why not deliver? Why not make it happen?

QThere is a great momentum with the organ donation issue. That must be a source of pride for you?

A We want to keep that going – keep it in the media, keep the conversation on everybody's lips. What it would mean is the full power of the Executive behind the Bill, the Health Department behind it, getting the Bill drafted.

My son (political adviser) Andrew Cromwell and myself are drafting the Bill, sitting up to all hours of the night working on the drafting.

Wouldn't it be lovely to show Northern Ireland that this Executive can deliver, rather than a Private Member's Bill?

If I have to do it on my own and work 24/7 with Mark and Andrew, then that is what we will do.

Q When do you think it will happen?

A I am determined to bring it in in this mandate. The Assembly election is 2016, that's why I was so disappointed the Health Minister has announced another consultation.

If he is minded to bring it in, then that leaves one year. Toward the end of the mandate, there are so many Bills coming up to the election.

This is too important to push through at the last minute – if it gets through at all. It certainly puts it in jeopardy. If we had the might of the Health Department behind it, 20 drafters, or however many they have, couldn't it happen a lot quicker?

The First Minister and Deputy First Minister have said they are behind it.

So get behind it. We wrote to them on November 20 asking for a meeting. I am still waiting for a reply.

Q What difference would a change in the law make?

A We will watch carefully what happens in Wales, but it could make a substantial difference percentage-wise.

Soft opt-out countries have shown a 25%-35% increase in those willing to donate.

The donor rate is currently sitting at 33% in Northern Ireland and it would go up to the region of 60%.

Fifteen local people die every year on average.

If you are waiting for heart, or lung, transplant you can't wait – and people are dying.

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