Alastair Ross
East Antrim · Democratic Unionist Party · Northern Ireland
“Over the weekend, she supported an independent investigation into everything that is going on in the RHI scheme. She has been working with the Economy Minister to try to make sure that we have something in place in early January to stop the costs of the scheme and reduce the cost.”
“There is no doubt that it has been an incredibly difficult time over the past two weeks for anyone involved in politics. It is quite clear that the public are, quite rightly, angry about a scheme that, with hindsight, was poorly designed and badly administered.”
“I know that, for some individuals, the old habit of asking questions rather than trying to answer them, dies hard, but what we had was not an opposition-driven policy or an attempt to hold the Executive to account; it was a media-driven thing, and some of the opposition parties tried to jump on the bandwagon.”
“Again, I hear the leader of the Alliance Party chirping away in the background. I listened to her contribution, and she must have had 10 or 11 questions she wanted answered.”
“That is why some of the hyperbole that has been around today is hard to stomach. <BR /> <BR />What we heard from my colleague Joanne Bunting was a thoughtful and considered first contribution to the Assembly, and I think that it was one that shows that she will be a valuable asset to the Chamber.”
“They abandoned their seats, and they failed to discharge their duties or ask the questions that their voters might, quite rightly, want them to ask. The public care very little about procedures, points of order or Standing Orders.”
The complete record
Every one of 1,064 lines we hold for Alastair Ross, in date order, each linked to its source. Free to read, in full, without an account. Page 12 of 22.
“<BR /> <BR />I have talked about some of the legal and moral difficulties with moving to a system of presumed consent. Again, I think that it is helpful to look at the Organ Donation Taskforce report, which has a specific section on some of the legal issues. I will quote directly from the legal working group, which said that it would be concerned about potential successful challenges under European Convention on Human Rights legislation. <BR /> <BR />It then states:”
“That is the concern. I am not challenging the fact that families will have a veto over it. What I am challenging is how we get the consent in the first place and whether having silence on the issue will help families make those tough decisions. I am very much of the view that it will not help families. If a relative of mine were in a trauma unit and, sadly, was likely to lose their life, of course, I would want to do something that they wanted me to do. The clearest way that I feel I could get that assurance is from knowing that they made an informed choice during their life to donate their organs. In those circumstances, I would be more likely to allow the donation to go ahead than if I was not sure. That is why, again, I have concerns about the Bill.”
“I absolutely accept the fact that, as with the current system, her proposals would allow families to effectively veto the donation from happening, but I think that that misses the point. The first stage is about how we get to arrive at consent, and I have a real difficulty that this House in passing the Bill is saying that we, as 108 legislators, have decided that every adult in Northern Ireland is a willing organ donor, without ever asking them.”
“I will give way to Mrs Dobson, although she does not always give way to me.”
“<BR /> <BR />I know that Members will try to trivialise this issue and say that I am just opposing it for a variety of other reasons or that I am not interested in saving lives. I am absolutely interested in saving lives, but I think that we need to do it in an ethical way and, in many cases, the ends do not always justify the means, and the means are equally as important. I think that, when it comes to what happens to our bodies when we die, we absolutely should be making sure that, during our lives, we make a declaration about what we want to happen because that is how we get certainty into the system.”
“Let me address the issue of saving people's lives. If this were clearly determined to save people's lives, I think that we would be having a different debate today. I contend that this legislation is not the primary driver that can help us to save people's lives through organ donation, and that is one of the reasons why I am opposed to it. I think confusing the two issues of telemarketing and what happens to our bodies when we die is trivialising the issue somewhat. I pose this question back to him: can he point to any area of common or statute law in which silence amounts to consent? Would anybody argue that there is any other area of medicine or in law where somebody's silence on an issue should be interpreted by law as the same as giving informed consent? That is one of the areas where I have real concern over this legislation.”
“Indeed, many members of the Health Committee are also members of the Ad Hoc Joint Committee on the Mental Capacity Bill and, time and again, we talk about the importance of autonomy of individuals being supported to take decisions and actively making decisions during their lifetime. <BR /> <BR />It is firmly my view that presumed consent is not consent at all. Is it legally valid? How can silence in an opt-out or deemed-consent system be interpreted as actual consent? It is an issue that I raised with many Members previously in the debate, and I do not think that any of them have given me a satisfactory answer to it.”
“The Alder Hey case exemplifies why the public are uneasy around issues of consent. For Members who are unfamiliar with Alder Hey, it was a case where doctors took organs from deceased children without parental consent. Obviously, it caused a public outrage and led to questions for the medical profession about whether it is ethical to take organs without informed and expressed consent from anyone. I say this not to be sensationalist; I simply refer to it as a case to highlight the sensitivities and fears around failing to establish consent. Personal autonomy is so important, particularly when it comes to the healthcare system, because it ensures that the individual's views and wishes are respected.”
“and expressed real concerns about moving forward with such a system. <BR /> <BR />Anyone who has researched this issue and read the comments of or spoken to clinicians working closest to organ donation will have heard this before; it is a common theme. A survey of Intensive Care Society members in 2008 indicated a belief that the introduction of deemed consent may damage the relationship of trust between clinicians caring for patients at the end of life and their families.”
“for organ donation. The article said that he feared that there would be a drop:”
“The article went on to state that Dr Grace spoke at a public meeting on the issue and reported that:”
“I say that not to be alarmist but to point to the fact that issues around consent are important and that we need to consider them. Many clinicians in the United Kingdom, and in Northern Ireland specifically, also harbour concerns about the impact that the Bill could have on the doctor-patient relationship and trust in the medical profession, as well as the question of whether it would work. <BR /> <BR />I noted comments by Dr Declan Grace, who is the lead clinician in charge of organ donation in the Western Trust. He is one such expert who has publicly come out and said that he has concerns about the Bill. An article that appeared in the Belfast 'News Letter' on Wednesday 19 February 2014, reported that Dr Grace said:”
“and that the presumed consent law was not really used. It goes on to state:”
“To document that, I will quote from a 'Health Law Review' of 2010, which talks about the Brazilian experience and states:”
“Members should read that report by a group of experts that was set up by the then Prime Minister Gordon Brown and digest some of the information that is in there. As I said to Mr Agnew, even if the evidence from elsewhere in the world were to suggest that an opt-out system, or a deemed consent system, will result in higher levels of organ donation, there would still be questions around whether it is the right thing to do. I contend that it is probably not. <BR /> <BR />Earlier, I mentioned the fact that in Brazil deemed consent was introduced to boost the rate of organ donation. However, in practical terms, the actual rate of donation dropped in Brazil. That was in part because of a backlash against the state presuming the consent of its citizens and also because of a lack of trust in the medical profession in Brazil.”
“Again, that is a point that I tried to make to Members. <BR /> <BR />The report then states:”
“towards deemed consent. It goes on to say:”
“Let me quote from that report because I think that it is important that we listen to the evidence that was produced by the organ donation task force. It says:”
“<BR /> <BR />I have referred to the fact that, in the UK, Wales has indeed gone ahead and legislated for deemed consent, although clearly most Members would acknowledge that it is far too early to determine whether it will have any impact. When Prime Minister Gordon Brown was in office, he was very supportive of moving towards a system of presumed consent. He indeed commissioned a piece of independent advice from the organ donation task force. What is interesting about that piece of work is that, although it started from a position of supporting a change in the law on how we donate organs in the UK, the report concluded, however, that the UK should not move away from the current opt-in system.”
“The importance of those transplant coordinators cannot be overstated. In Spain, the data quite clearly suggests that family consent rates are more than doubled when a coordinator in a hospital is able to spend three or more hours with a family. <BR /> <BR />Of course, the other country with a good record in organ donation is the United States of America. In the US, the surgeon general introduced new legislation on the US federal register that meant that each hospital had a legal duty to identify and refer every potential donor to the organ donor organisation. Potential donors are identified using clinical triggers that are very often present in patients who are likely to be diagnosed as brainstem dead. In addition, the US has a well-staffed and extensive network of organ donor coordinators and systems in place to reimburse hospital costs.”
“It goes on to say that, as it is pointed out:”
“The article goes on to say why it did not support presumed consent. It says:”
“Echoing the comments that were made by Professor Fabre, this article says:”
“Again, that is a medical journal arguing against bringing in presumed consent and saying that the main drivers are ones other than an opt-in or opt-out system. <BR /> <BR />A further interesting article on Spain's organ donation success can be found in a 'Health Law Review' paper of 2010, which explains what worked in Spain and why they have changed their mind on deemed consent. Again, I will quote from that journal. It says:”
“In particular and specific reference to Spain, Linda Wright goes on to say:”
“Spain's success is also referred to in a 'British Medical Journal' article written by Linda Wright, a bioethicist from Toronto. In that document she argues against presumed consent. She says:”
“These changes created an organisational infrastructure for transplantation, now internationally known as the "Spanish system". It is that system that the UK has emulated so successfully in recent years. It is from 1989 that Spain's donation rate began to rise to the pre-eminent position that it currently occupies. Many observers have wrongly attributed Spain's success to its 1979 presumed consent legislation. To correct that misconception, the director of the Spanish organ donation organisation, Dr Rafael Matesanz, was co-author of a paper that was published in the 'British Medical Journal' in 2010, which clearly stated that presumed consent law in Spain is dormant. <BR /> <BR />I think that that is important as we look at the countries that have the best rate and destroying some of the myths that exist around that.”
“I will quickly refer to an article written by Professor John Fabre, a professor at King's College London. He goes into some detail about the system that operates in Spain. <BR /> <BR />He said that Spain has consistently had the world's best donation rate, with around 32 to 35 per million population for more than 10 years, and that its family acceptance rate is an outstanding 85%. However, Spain does not operate a presumed consent system. As a result of its pre-eminent international position, advocates of presumed consent very frequently misrepresent Spain out of ignorance or wishful thinking. Spain passed presumed consent legislation in 1979. However, the legislation did not have a positive influence on donation and, so, in 1989, crucial organisational changes were instituted at a national level.”
“Indeed, when deemed consent legislation was enacted in Brazil and France, it had the opposite effect to that which was intended, and the rate of organ donation dropped rather than went up. More importantly, the top two countries in the world for organ donation, the United States of America and Spain, have an opt-in system similar to what we have in the United Kingdom. <BR /> <BR />I want to spend a little time examining the Spanish case study, because, over the last decade, Spain has consistently had one of the best organ donation rates and the family acceptance rate, the importance of which Mrs Dobson talked about earlier, is an impressive 85%, yet some misinformed commentary on Spain says that they use presumed consent. The truth of the matter is that Spain does not use presumed consent.”
“Those who support the Bill claim that, by passing it, we will save lives and boost organ donation numbers. Those, of course, are laudable aims, but, as I have said, evidence from around the world suggests that deemed consent does not work, and, if it did, there are all kinds of ethical, moral and legal difficulties with the system. <BR /> <BR />The presumed consent model is not a new one. It has been tried elsewhere and, most recently, Wales, as has been mentioned, decided that they would introduce presumed consent for organ donation. Interestingly, there is no established correlation between those countries that operate deemed consent and an increase in organ donation rates. Sweden, Norway, Brazil and Chile have presumed consent models but have significantly lower rates of organ donation than we do in Northern Ireland.”
“So there is an argument that, even though we have had a relatively positive story to tell, more should, and could, be done.”
“Sometimes, unfortunately, the individual does not take to the organ that they receive. It is not simply an arbitrary argument over numbers. Nevertheless, the numbers in Northern Ireland should be celebrated, although, of course, there is more to be done. <BR /> <BR />We should be applauded for the efforts that we have made in recent years to boost organ donation, but, of course, as other Members have said, that will be of little comfort to those waiting for a transplant who cannot get one.”
“When considered on a global level, Northern Ireland would be third on the table for living donor rates, as is shown by the International Registry in Organ Donation and Transplantation. <BR />From considering the number of organs that are gifted by those in Northern Ireland it is clear that we have some of the most generous people in the United Kingdom. The net gifting of organs in Northern Ireland is of a negative number for every major organ donated, meaning that we take less than we give to the national organ transplant pool. Some of the stats were read out by Mrs Dobson for the number of organs, whether it be liver, lung, heart or pancreas, that we donate and the few that we get back. It is important to note that not every heart will be suitable for every person waiting for a transplant.”
“Sweden has a rate of 17·1%; Austria's rate is 25·5%; and the much-lauded Belgium, which is globally recognised as a good example of organ donation, has a rate of 26·8%. That is reasonably comparable to what we have in Northern Ireland, which would, in European terms, be the fifth highest rate. Furthermore, Northern Ireland consistently has one of the highest living donation rates anywhere in Europe. With a rate of 32·8%, we can celebrate the bravery and generosity of those in Northern Ireland who go through surgery to donate organs to those who need them most. That is higher than in Sweden at 16·2% and Austria at 9·1% and much higher than the much-touted Spain, where the rate is 9·9%.”
“We should also use the evidence available to us to consider whether legislation is required at all. To do that, we must first determine whether we have a problem in Northern Ireland to solve and, secondly, ask whether this type of legislation will solve it. Only after examining those two issues should we consider whether the proposed legislation would be legally, ethically or morally sound. <BR /> <BR />Let us look at the current state of play in Northern Ireland. We have a reasonably good story to tell, as was acknowledged by the Minister on a recent visit to one of the Belfast hospitals. In Northern Ireland, we have a rate of 26·2% for transplants from donors, which is a higher donation rate than in many of the places in Europe that currently operate systems of presumed consent when we consider donations from those who have passed away.”
“Presumed consent or deemed consent, as it is labelled in the Bill, is a legislative framework in which all adults living in this jurisdiction will be considered to be willing organ donors unless they actively opt out by joining a register. That changes the default position. By passing the Bill, the 108 Members in the Chamber would effectively decide that everyone in Northern Ireland wants to donate their organs upon death, without ever asking them. I do not believe that we have the moral authority to make that choice for people. I strongly believe that we should make it easier for people to make their own choice about what happens to their body when they die and that we should absolutely not try to make that decision for them. <BR /> <BR />My principal opposition to the Bill is around consent. I will examine that in greater detail later.”
“Having considered the issue in some depth over the last number of years, I hold the firm view that changing the legal framework from the current voluntary opt-in system for organ donation and enacting legislation such as is in front of us today creates confusion for families rather than certainty, is not proven to work and is wholly unnecessary to promote and boost the level of organ donation here in Northern Ireland. <BR /> <BR />Before addressing some of my concerns in detail, let me say again, as I said at the beginning, that I support organ donation. I said that to Mr Ramsey. I agree with the goal that Mrs Dobson has, namely increasing public awareness and increasing the number of organs available for transplant. I simply disagree on how we get there.”
“The PHA report shows that, once they learnt more about what presumed consent was, that figure dropped to one that is more evenly balanced. That is something that we should certainly take cognisance of. When considering the views of donor families, the PHA document shows that there was no clear consensus on whether they would prefer an opt-in or opt-out system. <BR /> <BR />As I have said on numerous occasions already during my contribution, the role of the Chamber is to scrutinise legislation, to examine the impact and potential unintended consequences and to use evidence to decide on whether legislation is desirable or required.”
“That is recognised in the PHA public consultation document, which showed clearly that, the closer you got to clinicians who work with potential donors, families of donors and patients, the less likely they were to support changing to a system of presumed or deemed consent in an opt-out system. The same PHA report indicated that the more people understood about deemed consent, the less likely they were to support it. Suddenly, the figure of 90% for the people who, we often hear, support organ donation drops to around 50% for those who support a system of presumed or deemed consent. <BR /> <BR />I listened to Mr McGimpsey saying that around 60% of people supported presumed consent. That was during the first question.”
“I thank Mr McIlveen. That is the view that I was trying to articulate to Mr Wells. I am not trying to deny a debate on any issue. I hope that there is a healthy debate in the Chamber, because, up until this point, I have not heard much debate. Hopefully, if we are to fulfil our functions correctly, we will have that debate. There are genuine concerns about moving towards a position of presumed consent, not just from me and some of my colleagues and not just from ordinary members of the public but from clinicians and medical professionals. <BR /> <BR />A number of the clinicians who work closest to transplants have expressed their unease about changing the legal parameters in relation to organ donation.”
“I am not going to give way again. Mr McIlveen asked me to give way.”
“I will give way in one second. <BR /> <BR />Mr Wells has been a Member of the House for much longer than virtually anybody else in the Chamber. He, more than anybody, should know that the Second Stage debate is about the principles of the Bill. If you are opposed to the principles of the Bill and it passes through Second Stage, whatever happens with amendments, the same principles will come out at the other end. You are agreeing to the principles of a Bill. He shakes his head, but that is the process by which legislation goes through the House. If you agree with the general principles of the Bill, you can amend certain elements of it, but the fundamental coreof the Bill, which is presumed consent, will come out at the other end.”
“I have not denied any debate; we are having a debate right now.”
“I went out to consult on a different way of boosting organ donation. After consulting medical clinicians, my view is, very simply, that legislation is not required to boost the number of organ donors. Therefore, I did not bring legislation forward. The Member or any other Member should know by this stage that I am not particularly keen on legislating if it is not necessary. Sometimes, we legislate far too much. <BR /> <BR />I spoke to clinicians and experts on organ donation, and the view was quite clear: they did not feel that legislation was required. If I had reached the position where I felt that legislation was required, the way I was proposing would have been better than presumed consent. However, legislation is not required —”
“I agree with her. In my view, this Bill is not simple or uncontroversial legislation. I say that not because I want to embarrass Mrs Dobson but because she highlighted an important issue on the complexity and challenging circumstances of the Mental Capacity Bill. Equally, this Bill needs a lot of scrutiny and attention, and I am not sure that towards the end of the mandate we will be in a position to do that.”
“Mr Shannon and I have had many arguments over the merits or lack of merits of moving towards the position of presumed consent. This is not a political issue for me. I really despair at times when Members try to raise that issue, because, in my view, it is not a party political issue. <BR /> <BR />Given that it is a controversial issue, it is perhaps unfortunate that it is being introduced so late in the mandate, when the Health Committee could have a particularly heavy legislative workload. I noted the comments that Mrs Dobson made during the Second Stage debate on the Mental Capacity Bill on 16 June when she recognised the difficulty of introducing legislation so late in the mandate.”
“She did that after reading out a series of comments from party manifestos. In my view, this is not a political issue; it is a personal issue. I certainly have not stood on any Assembly manifesto supporting presumed consent, and my colleagues in the Assembly have not either. T <BR /> <BR />here are stark differences of opinion and different views on the issue. There are different views within the Democratic Unionist Party, and we have a free vote on the matter. Therefore, I found it particularly odd that people accused me of playing party politics with the issue, when some of my colleagues are very supportive of Mrs Dobson's Bill. In fact, the keenest supporter is Mr Jim Shannon, who is the Member of Parliament for Strangford.”
“I appeal to the Member to be patient, because I will articulate my arguments against the Bill for both reasons; first, because I do not believe that the evidence suggests that it will work; and, secondly, even if it did work, I think that there are real ethical questions around the consent issue. However, I will articulate those in more detail. If the Member wants to make an intervention at that stage, I will be more than happy to allow him to do that. <BR /> <BR />As I said with regard to some of the public statements on this, I think that no responsible person should call for important legislation of this nature to be rushed through without it being thoroughly scrutinised and considered, because that is, after all, our job. In her opening comments, Mrs Dobson appealed for us to rise above petty political posturing or party politics.”
“It is very difficult to have a rational debate in the circumstances in which those of us who oppose presumed consent or deemed consent are accused of not wanting to save lives or worse — of actively wanting people to die.”
“I do not want a situation where families will feel pressured into allowing donation to proceed in those circumstances. I raised the issue of consent with a number of Members, and how the absence of an objection from the individual concerned can never be considered the same as actual consent, and they have not given me a good answer on that issue. <BR /> <BR />Just as I commend Mrs Dobson for provoking a public debate on organ donation, some of the media coverage generated around the issue has been incredibly disappointing. Not only is much of it incorrect, ill-informed and sensationalist, but it has not, in my view, provided a balanced coverage for what is, as Members have acknowledged, an extremely sensitive and potentially controversial issue. To quote one example, on 12 February last year, the editor of the 'Belfast Telegraph' wrote:”