Jo-Anne Dobson
Upper Bann · Ulster Unionist Party · Northern Ireland
“I thank Nichola Mallon for tabling this important question today. I understand that, through correspondence with my colleague Andy Allen, and he articulated this earlier, limited resources and challenges are being cited as the reason. Those are not acceptable reasons for young children to be denied access to a drugs trial.”
“I take no pleasure in speaking on the motion today, but I do so as the Ulster Unionist Party health spokesperson. I wish to focus my comments on, as the motion says, the "grave consequences" for the health of our people of Northern Ireland.”
“The GP crisis, as we know, threatens cover across Northern Ireland. That became abundantly clear given the number of Members who wanted to take part this afternoon. With hundreds of GPs considering resigning, that rescue package can no longer become a reality.”
“<BR /> <BR />I want to turn my comments to the present GP crisis and pay tribute to the work of GP representatives. A rescue plan is needed, but, sadly, one is unlikely to come forward any time soon. Shameful.”
“Minister, this is a desperate situation that has caused real anger in Portadown and has the potential to impact on the health of all patients of the health centre, creating a domino effect across practices. Portadown must be prevented from becoming Humpty Dumpty. What is your response to the anger of the patients in Portadown?”
“Minister, I, like Mr Anderson, have met many of these homeowners, farmers and businesses in upper Bann that have been affected, and livelihoods have been put at risk. Many farmers have been there for generations, and they do fear that it is Groundhog Day.”
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“Overall, it has succeeded in driving up standards in restaurants and takeaways, and I have every hope that our Bill will do the same. It will give greater confidence to consumers and drive up food hygiene standards at outlets across Northern Ireland at the same time. This is one of those Bills that, along with minor changes such as today's amendment, will be able to deliver obvious benefits to consumers.”
“The Ulster Unionist Party supports the amendment tabled by the Minister. It is timely that the Bill is progressing to the next stage only days after the Deputy Minister for Health in Wales described the system there as a "big success". That is perhaps another example of the Welsh leading the way on public health amongst the regions. I will leave that for Members' consideration. <BR /> <BR />In the two years since the Welsh legislation came into place, the share of food outlets getting the top, five-star rating has risen from 45% to just over 60%. The ratio of firms rated satisfactory or better rose from 87% to over 94%, and the number of outlets with a zero rating halved from 134 to 61, which is around one in 500.”
“I commend the Member on his comprehensive answers so far. Given their importance, are there any plans to train additional staff in the use of defibrillators?”
“I am disappointed by the Minister's response. As important as sport is, we have heard loud and clear in this Building about the real need that exists amongst our farming families. Will the Minister agree to meet farmers and rural representatives to ensure that the focus in the programme reflects the real needs of our farming community? Is she confident that the make-up of the local action groups will enable them to address that need?”
“I am sure that many of the 373,000 local people on the waiting lists will join me in welcoming these much-needed additional funds for our health service. Will these additional funds enable the pressures that many domiciliary care providers find themselves under to be lifted? Trusts have often been far too quick to see this area as a soft target for cuts.”
“I submit that moving to a soft opt-out system will help to bridge the gap between the supply and demand for organs. I commend the Second Stage of the Human Transplantation Bill to the House and encourage Members to support it.”
“<BR /> <BR />Our continued focus on organ donation at the Assembly highlights to government and those with responsibility that the issue can and should no longer be left solely to the charities. Government has a key role to play. That is why I support the PHA's Speak Up and Save a Life campaign so vigorously and have included an education programme at clause 1 for that very reason. As I outlined earlier, the scheme would pay for itself through increased donations and decreased costs to the health service. <BR /> <BR />At a time of immense grief, a family whom we will never know gave me back my son. That is why I stand here moving the Bill. I want us to move to a position where organ donation is the norm in society and where not to donate is the exception. This is a journey that we have already begun, but more needs to be done.”
“Because they were touched by it and they knew what it meant to be waiting and for them or a loved one to receive a life-saving transplant. I am extremely proud to count myself amongst their number. They spread the word, whether among students or the general public, that any one of us at any time may need a life-saving transplant. They have also been vigorous supporters of the all-party group, attending regularly or, on a number of occasions, presenting. I have heard charity volunteers on so many occasions encouraging people to think about whether, if they are prepared to receive an organ to save their life, they are prepared to give an organ to save someone else's life. That is the fundamental point. From the bottom of my heart, I thank them for what they continue to do and for their support in bringing forward the Bill.”
“No, I will not correct the record. <BR /> <BR />I will leave the final word to the charities. As I said, we are blessed in Northern Ireland to have so many amazing people promoting and supporting organ donation, people who do the work not for financial reward but, quite the opposite, because they truly believe. They believe that it is their duty to promote organ donation and to tell the human stories of pain and joy or, in the case of our four local transplant athletes — Philip, Catherine, Kathryn and Matthew — to compete and win on the world stage and honour their donors through sport. <BR /> <BR />For decades, transplant volunteers were the small but ever-increasing band of voices shouting out for organ donation in Northern Ireland. Why?”
“I am nearly finished my comments. <BR /> <BR />We are blessed in Northern Ireland to have so many amazing people promoting and supporting organ donation, people who do the work not for financial reward but quite the opposite —”
“I mentioned in my earlier contribution the importance that Dame Mary Peters attaches to donor families. It is fantastic that she recognises them every year and that it is an extremely important issue for her. I welcome Dame Mary's support, alongside so many from the world of sport, including the support of the IFA and particularly Gerry Armstrong; Joe Brolly and the GAA; and Ulster Rugby, which has been assisting and helping to promote the move to a soft opt-out system. <BR /> <BR />I will leave the final word to the charities —”
“I very much look forward to reading the letter. I want to put it on record, Minister, that we have not been able to get an appointment for a meeting yet. The previous one was cancelled: could we slot that in very soon? <BR /> <BR />It only remains for me to thank all Members who contributed. I repeat: my door remains open. I have listened carefully to all the points that have been raised and I give an undertaking to carefully consider the points raised by Members. Each donor, as has been said, can save up to seven lives. I know so many families, some of whom have lost mothers, fathers, sons, daughters or grandparents, who take great comfort every day from the fact that their loved one allowed someone else to live. I can think of so many cases where that is true. We in the organ donation family hold each and every one of them up as heroes.”
“The Minister's position seems to be to wait and see whether lives are saved in Wales, and then, when he finds out that they are, to act here. That will be disappointing to campaigners and charities. <BR /> <BR />In reply to a question for written answer in October 2014, Jim Wells said that he would make a decision on whether to bring forward statutory opt-out legislation once he had reviewed the second PHA survey. I welcome Jim's contribution today. Given that the survey shows an increase in public support for soft opt-out legislation, it would be helpful to know whether the Minister takes the same decision that his predecessor took.”
“Just like my Bill, his looks to the future — five, 10, 15 and 20 years down the line. It is interesting that such far-reaching issues are being brought through as private Member's Bills, not by the Executive. John spoke about having important discussions over the dinner table. I welcome his contribution. <BR /> <BR />Claire Sugden raised some very important points. I welcome her support and look forward to working with her as the Bill progresses. <BR /> <BR />I was disappointed by the Health Minister's "leap in the dark" comment. It is hope that we should be seeking to give our constituents, and consecutive Health Ministers have taken the stance of researching continually rather than taking action, one minute seemingly supporting soft opt-out and the next minute opposing it.”
“Thank you, Mr Principal Deputy Speaker, for clarifying that. <BR /> <BR />As I said, I welcome Mr Agnew's recent support for transplant awareness week. As he said, I will work with anyone to get the right Bill for Northern Ireland, and my door has been firmly open. I would welcome Mr Ross taking the opportunity to come to speak to me as the Bill progresses. <BR /> <BR />Mr Agnew said that organ donation is one of the wonders of modern science, and he spoke of William Johnson, who has waited 17 years on a kidney. He hopes that this opportunity will not go to waste. <BR /> <BR />John McCallister has been supportive of the Bill from the beginning, and I appreciate his comments, not least because he knows what it is like to bring through a private Member's Bill and the hours of work that it entails.”
“No, I am making my points. <BR /> <BR />The Member would, of course, have had the opportunity to commission his own research for his own Bill. I agree with him that I would have preferred to see action from the Department, especially given the support from the First Minister and the deputy First Minister. <BR /> <BR />Steven Agnew stated the support of the Green Party for the soft opt-out system and said that he had tabled a number of questions for written answer on the issue. I welcome his recent support for transplant awareness week, when he took the time to meet the charity volunteers in Room 115 to support their cause. He referred to organ donation as —”
“On the RaISe document that he mentioned, does he agree that, had there been a greater level of support and openness from the Department, we could have had greater knowledge of the costs at this point? That paper is available in the Assembly Library.”
“No, I want to make my points. You have spoken quite a lot. <BR /> <BR />The Member says that he supports my aim of increasing the number of donors, yet he wants to put the brake on the only Bill brought before the House that seeks to do so. The Member talked about Brazil and the public mistrust around the issue of abuse of organs. I hope that he is not for one second suggesting that we have, or could ever have, that situation. I am sure that his colleague the Health Minister would be gravely concerned if he is. <BR /> <BR />The Member said that he opposed the Bill and proceeded to go through his thoughts on how it should be approached at Committee Stage.”
“He told us about his strong, fundamental opposition to the Bill and said that he will oppose it at this stage, which, naturally, disappoints me, given his previous stance of wishing to bring forward legislation on this very issue. <BR /> <BR />I wish to correct the Member. During his contribution, he said that the second PHA consultation showed a drop in public support. It did not; it went up from 56% to 61%. The Member said that he supports —”
“<BR /> <BR />I have trouble with Alastair Ross's concerns about ideological difficulties, especially as, I am sure, he probably knocked on the doors of the East Antrim constituency for Sammy Wilson's 2010 Westminster campaign, when there was a commitment in the manifesto to support presumed consent; not soft opt-out, but presumed consent. If it was so right for the people in 2010, why is it so wrong for them five years later? Alastair said that legislation was unnecessary and possibly counterproductive, but he congratulated me on bringing the Bill to this stage. I agree with him that the most important thing that we can do is to discuss the issue with our loved ones.”
“<BR /> <BR />I welcome Pat Ramsey's contribution and his willingness to see the Bill go forward to Committee Stage for scrutiny. He referred to personal stories and talked about the clear support in Northern Ireland for the change to the soft opt-out system. He referred to the 162 people waiting for transplants and encouraged Members across the Chamber to meet me. As I said, I wrote to Members in 2013 offering that opportunity, and my door remains firmly open. <BR /> <BR />Daithí McKay talked about the cultural changes that have occurred in other countries. He described the Bill as one of the most important in this Assembly term, and I appreciate that, given his record for private Members' Bills. He said that lives were at risk and the proper thing to do was to allow the Bill to proceed to Committee.”
“According to Ms McCorley, due to the lack of available donors, soft opt-out is the right way to go. She referred to the presentations made to the Committee by those whose lives were changed by organ donation. She also referred to the number of people who die each year, and she encouraged Members to support the Bill and for the public to have that conversation. <BR /> <BR />Pam Cameron said that organ donation was an issue for further debate and that she had real concerns with the Bill. I say to the Member that the central issue should be carrying out the will of the deceased. She also said that any legislation introduced in the wrong way could be detrimental to our constituents. I recognise some of her concerns, but would say, as I have always said, that I am willing to work with her as the Bill proceeds in Committee.”
“I thank Mr Dickson for his comments and for what he said about the meticulous research on the Bill. <BR /> <BR />Gary Middleton is the newest member of the Health Committee, and he is welcome. He referred to the varying systems across the world. I agree fully with him that the personal stories bring it home to all of us. He talked about Andrew Duncan and his untimely death one year ago today. Andrew was scheduled to present to the all-party group last year, but, sadly, his illness prevented him from doing that. I had the immense privilege of meeting his wife and viewing the video that the British Heart Foundation brought to the all-party group. I also agree with Mr Middleton that Andrew's story and other emotional stories highlight the current situation. <BR /> <BR />I agree with Rosie McCorley about this being an emotive issue.”
“Very poignantly, Michael mentioned the loss of children with their entire life ahead of them and said that the greater availability of organs would increase life chances for seriously ill children. By facing serious issues raised in the Bill, we are actually saving lives. Not going forward will be to the detriment of patients, especially the young children whom Michael referred to. In principle, for the prize and what we will get out of it, we should get behind the Bill. I thank him for his contribution. <BR /> <BR />Stewart Dickson talked about his experience of early heart transplant recipients and said that their lives were extended as a result of organ donation. He also spoke about a friend who had received a second kidney transplant — someone who has returned to as normal a life as possible.”
“I thank Michael for his important support for the Bill; his insight as a former Health Minister has been crucial in bringing it forward. I will try not to embarrass him too much, but I remember being with Michael back in 2009 at the opening of the Wellbeing and Treatment Centre at Forestside. Mark and I were there with an army of organ donation volunteers, raising awareness and funds. Mark was not long after his kidney transplant, but, as always, he was there with me, by my side, and I was delighted with the support that Michael showed us that day. It was a shot in the arm for us volunteers to know that we had the support of the Health Minister. It meant a lot then and does to this day.”
“I am also grateful to Mr Ramsey and, previously, Mr McDevitt for their roles as vice-chairs of the all-party Assembly group on organ donation. I understand that Mr McKinney has asked a number of questions for written answer, and I feel that he has touched on very important issues here. He spoke about an important balance that needed to be struck and supported the role of advocates. I thank him for his support and kind comments, and I agree that there will be major moral, ethical and legal issues as the Bill proceeds. I welcome his commitment to the inclusion of safeguards. I welcome Mr McKinney's recognition of the work that been undertaken and his focus on finance and cost savings. <BR /> <BR />The next Member to speak was Michael McGimpsey, who referred to the prize that we will get out of this and the fact that this is ground-breaking.”
“I also welcome his recognition of my extensive consultation and overview of the Bill. Mr Easton spoke about medical opinions on the Bill. I understand that that is exactly what the Committee Stage can achieve and welcome his role in this as Deputy Chair. Finally, I refer to his comments on organs being made available to patients across the United Kingdom. My son Mark's kidney came from England. Mr Easton's colleague Mr Poots, when Minister, recognised that we benefited hugely from that relationship. <BR /> <BR />The third Member to speak was Fearghal McKinney. He poignantly asked us to consider those lost lives, and that is exactly what we should be doing. I am grateful to the support provided by Mr McKinney and Members of his party for organ donation events in this Building.”
“She acknowledged that the Bill has the potential to touch every one of us. Importantly, so too does the issue of organ transplantation. I agree with her that consent is a difficult issue, especially for grieving families. However, it is made a little easier when they know what the wishes of their loved ones were. She referred to the important role of clinicians, but that is to advise and not to take decisions on consent. They are very clear on that. She highlighted that no one could put a financial figure on good health. I agree with her comments about education and communication being crucial cornerstones of the Bill. <BR /> <BR />I am thankful to the Deputy Chair, Mr Easton, for his contribution to the debate and, at the outset, his open-mindedness as the Bill goes forward.”
“A number of Members raised the British Medical Association, and I welcome continuing to work with it. I have indeed been in contact with it to set up a meeting in the coming weeks to discuss the Bill. I mentioned earlier that I am also looking forward to a fruitful working relationship with the Department of Health, and I welcomed the opportunity to meet with the director just two weeks ago. <BR /> <BR />I turn to individual contributions by Members, and there were many. Maeve McLaughlin's was the first. I thank the Chair for supporting organ donation events with charities in this Building, and I welcome her support for transplant awareness week. During her speech, the Chair gave us an overview of the Committee evidence session and highlighted what she called the stark reality of 15 people dying, and that rose to 17 last year.”
“No, I have already given way plenty. <BR /> <BR />I have long said that I believed that the Executive should bring forward the legislation, and that it should not be left to a Back-Bencher such as me to do so, although I remain completely committed to seeing it through. No one would have been more delighted to have seen the Bill taken up by the Executive and, indeed, I believed that it was going to happen on a number of occasions. Indeed, when I met the First Minister and the deputy First Minister jointly on the issue in March of last year, I raised the matter of resources, given their public support for the soft opt-out system. I remain hopeful that I will be given the opportunity to work alongside the Department of Health as things progress.”
“That, Members, is what I am asking of you today: that we work together to achieve the right Bill for Northern Ireland.”
“In making the winding-up speech for that important debate, Ms Paula Bradley said — and I could not agree with her more:”
“Those words stand as true today as they were two years ago. I hope that Members realise that this Bill includes the all-important education programme that he spoke about. <BR /> <BR />Equally, I was heartened by the very open debate that took place in the Chamber in February 2012. Member after Member, from all sides of the House, reiterated their support for organ donation, and issues about the opt-out system were raised in what was a very measured and tempered debate. In his contribution to the debate, we received what I believe was an important commitment from Minister Poots. He said that he was of the opinion:”
“In responding to a question that I asked that afternoon, Mr Poots said:”
“It also highlighted the already critical shortage of organs and that three people in the UK die waiting for a transplant every single day. The two-part documentary had exclusive access to Scotland's entire transplant service, and I commend it to Members as compelling viewing on the issue of organ donation and the very human aspect to the ever-growing number of patients whose lives are on hold, desperately waiting for an organ to become available. <BR /> <BR />As a lifelong supporter of organ donation, I have been heartened by comments that have been made in the Chamber by successive Health Ministers. These included comments on 5 February 2013 after the First Minister and deputy First Minister gave their support to the soft opt-out system alongside the then Health Minister, Mr Poots.”
“That was highlighted vividly in a recent BBC Scotland programme entitled 'Transplant Tales, Life on the List'. The programme made for compelling viewing and was a regular fixture in our house, watched several times on the iPlayer. It looked at the challenges of an ageing population and issues including alcohol, obesity and, specifically, the alarming rise in diabetes. It concluded that, due to those and other issues, the demand for transplant organs is, in the words of the programme:”
“When our fantastic clinicians were pioneering surgery at the City Hospital in the 1960s, 1970s and 1980s — I think particularly of Professor Mary "Mollie" McGeown CBE, whose portrait still hangs proudly on the eleventh floor — little did they think that medicine would move on quite so dramatically. Professor McGeown proudly oversaw the opening of a purpose-built transplant unit at the City Hospital in 1968, and a dialysis unit was established on the same site the following year. Countless local lives have been saved in the 47 years since, and the unit that she proudly oversaw has changed dramatically since that time. <BR /> <BR />Equally, I know that we now have the ability to transplant organs that may have previously been rejected as unsuitable or too risky.”
“Those comments were made eight years ago. As Sir Liam is a senior medical expert, I welcome his continued support for the soft opt-out system and recognise that he supports, as I do, the key role that the family has to play in that system. All too often when we plan, we do not lift our heads to the future. Dealing with the here and now often becomes more important and pressing. On an issue like organ donation, it is very clear, and has been said again today, that change does not and cannot happen overnight. It is a process. It requires careful planning and a vision for the future in, as I said, five, 10, 15 or 20 years' time.”
“It shows that the number of people over 85 in the United Kingdom is predicted to more than double in the next 23 years to over 3·4 million people. That will inevitably have an impact on our services here in Northern Ireland. As I said earlier, when viewing the Bill, we should look at the position we want to be in in five, 10, 15 or even 20 years' time. <BR /> <BR />Those figures are to be welcomed and celebrated, but an ageing population will inevitably continue to put pressure on the demand for organs. Sir Liam said:”
“That is one prediction that has certainly come true. I thank Members from across the House for their contributions. As I said earlier when talking about organ donation, there is always a need for emotion and sensitivity, and we have certainly had a considerable amount of both in the debate. I am thankful to Members for that. <BR /> <BR />We have heard much in the House about the Donaldson report in the last couple of weeks. I would like to reference Sir Liam in relation to his views on organ donation. In 2007, the then Chief Medical Officer was at pains to point out that, as we face an ageing population, the demand for organs will inevitably increase. That is an important point, which I do not believe can be overemphasised, especially with recent research from Age UK, which has been raised in the House in relation to other issues.”
“It certainly has been a marathon debate. I thank all those Members who spoke during it. In opening the debate, I said that I rose first as a mother of a successful kidney transplant recipient, and it is in that spirit that I wish to continue to speak in closing the debate. I repeat my offer to continue to work with any Member on any aspect of the Bill. That has always been my intention. <BR /> <BR />I well remember the Health Minister's immediate predecessor predicting in the Chamber earlier this year that this debate would be:”
“I thank the Member for giving way. I also thank her for her interest in organ donation. You alluded to the fact that you can make your wishes known in a will. Given the timing and the critical window we have for transplanting organs, that would not always be the best way. The safeguard you are talking about is ultimately to make sure that, if you are a passionate supporter of organ donation and you want your wishes to be considered and are not sure if your family can make that decision, whether it is through grief or if they are opposed to it, this would be where the advocates would come in to make your wishes known.”
“I thank the Member for raising that point. Quite a lengthy document needs to be signed, and no clinician would ever remove organs without having that consent.”
“I thank the Member for giving way. The Member has raised the issue of silence providing consent numerous times during this debate and has challenged a number of Members to inform him of when silence is assumed as consent in other areas of our health service. Well, I am going to accept that challenge from him, and I will welcome confirmation from the Minister that there are many areas in the health service where this is the case, including but not limited to additional procedures during surgery, emergency treatment, mental health conditions, self-harm and attempted suicide, and when there is a risk to public health. However, I have said from the beginning that the family will and should maintain the key role in providing consent following the death of a loved one.”
“Maybe the Member can give us an update, following consultation, on the position of his Bill.”
“I thank the Member for giving way. Where does it say "presumed consent"? It is deemed consent with family affirmation.”
“I thank the Member for giving way. I just remind him that my door remains open, as it has been since I first proposed the Bill. I have corresponded via email, and I am still waiting for the Member to take up the offer to come and meet me. I also remind him that, in a radio interview on Frank Mitchell's show last year or the year before, you reiterated the fact that, if a family affirmation were in the Bill, you would have no concerns about it. What has changed since then?”
“I look forward to Members' contributions to the debate and the ongoing help and assistance to deliver the best Bill possible for the people of Northern Ireland. We owe it to the present generation who are awaiting a transplant, and we owe it to future generations to come, to change the law and to improve the life chances for all our people.”
“I, for one, am truly glad that that is, and will continue to be, the case. I am truly humbled and delighted, as a mother of a transplant recipient, to be included in their number, and to work towards an aim that many of them have held close to their hearts for many decades. Members, I am asking you to join this campaign today. I will say in the House again what I have said many times before, that I bring the Bill forward first as a mother of a transplant recipient and as an organ donation campaigner who happens to be a Member of this legislative Assembly. <BR /> <BR />It is with a deep sense of pride and purpose that I commend the Second Stage of the Human Transplantation Bill to the House.”
“They are the true heroes in Northern Ireland, and they have absolutely nothing but my admiration and praise for all that they do to help increase the life chances of others. <BR /> <BR />It must never, ever be forgotten that behind each volunteer is an individual story of emotion and one that will tug at the very heartstrings. We have heard so many of their stories through the all-party group, which I am honoured to chair. I am delighted by the fact that it has become an efficient vehicle to bring to the Assembly the stories behind human transplantation, whether it be an individual's story, the fantastic success of the transplant games athletes from Northern Ireland or the views of individual groups and charities. <BR /> <BR />Organ donation has a voice in this Building.”