 Good morning and welcome to the 34th meeting in 2015 of the Health and Sport Committee. I would ask everyone in the room to switch off mobile phones as they can often interfere with the sound system. Ask those of you who are with us this morning to note that members and clerks will be using tablet devices instead of the hard copies of their papers. The first item on the agenda today is a final evidence session on transplantation, authorisation of removal of organs, etc. Scotland Bill, we will take evidence from two panels this morning, and the first panel is now with us. I welcome Maureen Watt, Minister of Public Health, the Scottish Government, Gareth Brown, head of health protection division, population health improvement director at the Scottish Government and Professor John Forsyth, lead clinician for organ donation and transplantation in Scotland, and consultant, transplant surgeon, royal infirmary of Edinburgh NHS Lothian. Welcome to you all. I'm going to move directly to questions. Are you okay with that? Yes, go. Yes, please, Minister. Then you address. We welcome your comments then. Okay, thank you very much, convener, and thank you for inviting us here today. I'd like to make a few general opening remarks and then, of course, be happy to discuss the bill in more detail. The first point I'd like to make is that I understand that the committee has received and sought a great deal of information and opinion on the general principles of opt-out, on whether opt-out would definitely increase organ donation rates or not, and what has happened in other countries. I entirely appreciate that this is necessary in order to understand the context of the bill, but the reality is that the international evidence and experience is not clear, and that's why the Scottish Government has said it will be useful to wait and see how this sort of approach works in Wales, a country with a health system more like Scotland than any other in Europe. To be clear, convener, the Government does not have a principled opposition to opt-out, but it is right that we are cautious. If experience in Wales is such that a legislative change directly leads to an increase in donors and transplants, then I can confirm to the committee that we would consult on such an approach for Scotland. But today our focus must be on the specific bill that we have before us and the measures it is proposing. You will have read the Scottish Government's detailed paper on the bill. You have heard expert oral testimony from clinicians in the field, specialists who actually support potential donors, donor families and transplant recipients, and you should receive written submissions from many of the organisations most closely involved in organ donation in Scotland. The vast majority of them, even those who are generally supportive of opt-out, have expressed significant concerns about measures contained within this bill. In particular, the concept of the authorised investigating person and the role of proxies seems to be fundamentally problematic. I do not believe that these concerns should go unheeded. These are people who work tirelessly to save lives and who know intimately how the system works. They have no reason to be against these proposals unless they genuinely believe they would do more harm than good. I am aware that Ms McTaggart wrote to the committee on the first of December setting out her response to some of the issues that we and others have raised. I cannot today give a point-by-point response to that letter, but if it is useful to the committee, I am happy to arrange for officials to provide a written response. I would like to pick up specifically on the suggestion that the current system is not working. Ms McTaggart has expressed concern about a recent fall in donation numbers in Scotland. She has suggested that our legislation may be necessary to turn that trend around. While the figures that Ms McTaggart uses have presented are correct, her analysis is a little unfair and should not be used as an argument in support of this bill. Donor numbers in the last year have fallen slightly across the UK for various reasons, but that fall is in relation to the preceding year, which was the best that we have ever seen. Last year, figures are still the second best that we have ever seen. Ms McTaggart is saying that, because last year we had only very good levels of performance instead of outstanding levels of performance, we saw the year before that the system is not fit for purpose, and I would disagree with that. Ms McTaggart has also drawn attention to the rate of donors per million in Scotland and says that our rate has only increased by 0.3 donors per million population in the last three years. However, again, this is a slightly misleading presentation of the figures. In 2007-08, our donor rate was 10.1 per million population. In 2013-14, it was 19.8. We doubled our donor rate in six years. In 2014-15, our donor rate dropped back slightly to 18.4, a combination of slightly lower donor numbers and an increasing Scottish population, but that rate is still the second highest that we have ever had. The message here is that the long-term trend is more important than year-to-year fluctuations, and the long-term trend in Scotland is that our donor and transplant numbers are increasing. The transplant waiting list in Scotland has dropped by 20 per cent since 2007. That is real success, real progress, and we should not likely cast it aside. Of course, there is still more to do, and we could have a long debate about whether or not presumed consent in principle or other measures would increase our successes. However, we are here today to talk about this particular bill, and like the professionals you have already heard from, we have very real concerns about the harm that may be done if this bill passes. There is no doubt that this bill will make the ordination pathway more complex and slower. That will lead to organs being lost. Our success is fragile and any misstep may lead to years of damage and more lives lost. That is not an abstract risk. There are real world examples of that happening elsewhere in Europe. Anne McTaggart is to be admired for the fervour and passion that she brings to this matter. There is no doubt that she is committed to her aim of saving more lives through increased donation. So am I, so is the Scottish Government and so are my officials. So is every specialist working in this field. In expressing concerns about this bill, it is not because we do not want to do more. It is not because we are passive or unwilling to try different things. But any change to the legislation for organ donation must be done carefully and cautiously. That is more important than doing it quickly. So I am very grateful for the committee's careful scrutiny that you are giving to this bill and the thoughtful questions that have been asked in previous evidence sessions. And I would be happy to discuss the proposals in more detail. Thank you Minister. Dennis Roberts. In your statement we have heard that we all want to see probably an increased donor rate and obviously an increase in that transferring to transplants. Ann MacTargart has suggested that there is sufficient international evidence to say that proceeding with the opt-out would result in that, but you are challenging the evidence. I presume that the reason you are challenging the evidence is because you believe that it does not stack up. Why would that be? Well, we know that with our current system Scotland is up there among the highest rates of donors. I think that there are six countries that have opt-out systems that have a higher rate than Scotland. There are seven that have an opt-out system, and I am not sure if those figures correct me, that have opt-out systems that have lower rates. Having an opt-out system of its own does not necessarily mean that you are going to have higher rates of donation and higher rates of transplants. I am not sure which members of the committee went to Spain, but Professor Matysanne has said that it is not just the opt-out system in itself that is important. It is important to have the infrastructure available in the country in terms of how organs are prepared for transplant and how organs in fact are identified for transplant that is as important as the opt-out system itself. Of course, the bill and Amic Tiger are suggesting that the current opt-in in terms of registering would still be there, so it is not an opt-out per se on its own. The register in terms of people wishing to register would also be there. As I have said, Ms MacTagger is suggesting that it would increase to donations. The reason that Ms MacTagger is suggesting is that, with good raising of awareness, it would indeed lead to additional organ donation, and that is being supported by the British Heart Foundation. The bill is talking about presumed consent, but we are talking about having investigating persons and proxies. We believe that that adds extra complications to the process and has very detailed hindrances to the existing process, which will prolong the process and involve legality, which is not there at the moment. I have been to meet specialist nurses and organ donation in Aberdeen, where the rates have increased dramatically and also in Professor Forsythe's department. The nurses are excellent at working with families to suggest organ donation if people are not on the register. By having AIPs and proxies, we believe, as others who have given you evidence have suggested, that that will make the system much more complicated. Do you believe that the bill could be amended with respect to some of the concerns that you have, or do you believe that the Scottish Government is needing to look at existing practice and put in a process and procedure in an effort to raise the donation rate, which would also result in higher transplantation? On your first question, Mr Robertson, we do not believe that the bill could be satisfactorily amended to make it good. For example, the AIP is mentioned in the vast majority of the 20 clauses in the bill. On your second question, yes, we believe that there is a lot more that we could be doing under the present system. We are doing a lot. It is perhaps not entirely clear what we are doing, and I will bring Professor Forsythe in a minute on that. However, as I have said in my opening speech, we are not against opt-out per se, but we would like to wait and see how the Welsh system progresses. It is the system that is most closely aligned to our NHS system, and if we see dramatic changes in the Welsh system, we will look at consulting ourselves on an opt-out bill. Professor Forsythe, do you like to mention that book group? Absolutely. I am happy to come in. Just to say that when I started getting involved in trying to improve organ donation rates, I have been involved in transplants for about 30 years now, and I have in the last number of years tried with the support of a number of people around this table and thank you for that continued support and thank you for the interest from Ms McTaggart. All of that has improved the focus on organ donation, but when I started all of this, I, like a number of members of the committee, went to Spain because that seemed to be the place to go, and I spoke with Rafael Matasanz and he has become a friend and a colleague, and I went thinking that the legislation was key. In fact, I was surprised to find out that, in fact, he was saying that the legislation was not so important, and often in lectures on this sort of topic, I have quoted him as saying that it contributes little or nothing to the improvement of organ donation rates, and he believed that infrastructural changes were the things that needed to be made. We have been involved again with support of a number of people around this table. We have seen a significant increase in organ donor rates in Scotland over the last number of years. There is still so much more to do, and there is a plan to do more of those infrastructural changes, a plan 2013 to 2020, and I would focus particularly on a number of different things. I would say that some of them within this document say about more of the same. Education, the education pack that is within every secondary school in Scotland is actually held up as a very good model for other parts of the UK. We need to continue with that, we need to continue with the publicity. In addition, we need to look at consent rates, authorisation rates and trying to improve those rates. I know a number of members of the committee have asked about that, and there are ways that we can do that, trying to get up towards the levels that Spain has got. I was struck a number of years ago that a member of our Scottish transplant group had donated organs around the turn of the millennium. She was struck by the lack of training at that time of people who approached potential donors and potential donor families. We have made a lot of headway in the last number of years, but there is a lot more to do. Also, we have identified in this approach for the next few years a whole hospital approach. Organ donation is seen as a very important thing within transplant units. It is seen as an important thing within intensive care units now, but perhaps it is not seen all the way through the hospital, through all of the emergency departments, through stroke units, through the whole of the hospital. That is something which Rafael Matasance in Spain is also trying to bring about, to improve their donor rates yet further, and I think that we can do more in Scotland. The last number of years we have seen a significant increase. When I started out on this, our donor rates were at nine donors per million population. We have now seen a significant increase, but there is still so much more to do. The evidence for opt-out legislation being the key to that is not particularly strong. My worry is about the risk that opt-out legislation can have if not framed and very sensitively introduced. Thank you for that. Some of the figures that have been going around in some contention with us. UK is behind Spain. They are the world leaders in that. Scotland is behind the UK. We have 42 per cent on the organ donor register in Scotland, and the UK average is 33 per cent. I do not know if you want to break it down further, Gareth. You do not need to put that. Before we go on to the register, Sweden has a very high register that does not equate to actual donations. I am more interested in actual donations at this point, not the people that are on the register. Are we behind the UK, or are we running alongside them? That is what Professor Forsyth has been explaining, that you need the organ donation infrastructure there, as well as the number of people on the organ donation register in order to get an increase in the number of transplants that occur. Since 2008, we have improved the organ donation infrastructure. That has led to an 82 per cent increase in the number of donors and a 62 per cent increase in the number of transplants from deceased donors. However, I do not know where Professor Forsyth would agree that that equation, particularly when you quoted Professor Matheson, is so important. Professor Matheson does not equate clearly the number of people on the register necessarily with the number of donations. I will come back to that and play the professor. I agree with the convener that there is not always a read across from a register to organ donor numbers. What you will have experienced in Spain is that whole feel of publicity, actually almost a national pride in the way that organ donation is run, and a continued focus on those things that are required if you are going to keep the donor number at a higher level. What we have seen in the UK is the different UK countries changing places. Scotland used to be, again, when I got started and all of this, way behind the rest of the UK, has now improved and came up to be around the same as the rest of the UK. Last year it was lower than the rest of the UK, but the year before that it was not. It is going to change a little bit, but the donor numbers have improved across the UK, but we can do more. We are still way behind Spain. Any questions here at this committee should not be taken if we are not doing well. I think that we are all keen to explore, in the broadest sense, how we could do better, because in our engagement with people who are waiting on that list for a transplant, I am not enthused with the idea of waiting two or three years to see how Wales got on, because they are losing people every week. That is what they tell me. We are looking at that sensitive area, but the point needs to be made in terms of publicity, raising awareness and so on. The organ donation marketing budget has been cut by half since 2013-14. That does not seem to be consistent with a drive to get that message over. In Spain, it is almost done the job in terms of the marketing, although it continues to do it. My observation was that they are already there. The Spanish take pride in being the best in the world, and there is an expectation. There is also a difference in our recent discussions with people on the front line. The organ donating coordinators in the hospitals feel that the current legislation in Spain changes the discussion with people, and they believe that it is very important. That is what we heard the difference from the professor and the actual practitioners, that it did change the discussion. Is there anything in the bill that changes that discussion? If I can answer your question about the marketing budget in 2013-14, we started a new campaign, and in that year we were developing the campaign, so there were a lot of upfront costs that year. In the following year, we put it into practice, and that was the reason for the overall campaign split in the number of each year. I do not know whether you want to explain that a bit better. It is correct that the budget is halved between those two years. The year when we had higher budget, we were, as the minister said, in the creative development and creative testing, and that is part of the most expensive part of campaigns. When we moved to implementation, we took a different approach. We moved much more into online and into social media. For example, we stopped doing direct mailing. Previously, we were mailing a lot of people to encourage them to join the register, but the research that we had and the evidence was that we had taken that as far as we could, and we were no longer getting the return on investment. While that was also clearly the decision that the Government has to make on its marketing spend and its marketing budget, but that was not just a cut for the sake of a cut. That was that we were taking a different approach when we were moving more into online and internet-based approaches. In fact, the value of the marketing is to drive people to the organ donor register and to make their wishes known. We have seen that the numbers on the registers continue to go up, so a reduction in budget does not necessarily mean that there is a loss in quality of outcome or quality of outputs. We are targeting it. Obviously, overall budgets are decreasing, but we are targeting the money that we are spending much better. For example, I went with Pam behind me to a Black Asian and minority ethnic project where peer educators are going to the Melas in Glasgow in Edinburgh to try and increase the numbers of donors. That is a real good way of using the money, because we know that a lot of people have kidney disease in the minority communities, and we need to make sure that we increase the number of donors in those communities to match the need there. That is a specific way, as well as the online staff and being able to register when you take out your driving licence. We see a number of youngsters when they are applying for their licences, automatically joining the register, so there are different ways of using it. I will invoke this Spanish professor who dismisses much of that—the tick in the licence or whatever—and important conversation takes place at that moment in time. I think that Professor Forsyth referred to some of that about education and training and the people who are doing that are the important link in all that to increase donations. I think that we have full leads. We have the nurse leads and the clinical leads already in place in all 26 hospitals where there is any department, but I think that it is that read-over. People, as I understand it, have to be in the intensive care unit in order that we can talk about the donations. As Professor Forsyth said, we need other departments in the hospital to be thinking about whether a person is at the end of their life, whether their organs can still be of use to somebody else. Spain's got three times as more intensive care beds than we have, and that an increase in intensive ICU beds would be likely to increase donations. We heard that in evidence last week. I think that there are differences. The difference between our donation rate and Spain's donation rate is quite huge, and you need to dig into that in much more detail. I think that you are right in terms of the number of high-dependency beds and ITU beds. I understand that it is not my area, but I understand that it is much higher. Also, the whole idea of futility of care at the end of life, the whole idea of saying, okay, we've done enough and now we pull back, that's quite acceptable across the whole of the UK. It is not at all acceptable in Spain, as I understand it. Therefore, the possibility for more potential donors is much higher in Spain, and also the age of potential donation is much higher in Spain. Having spoken to Professor Matteson at some length and really trying to learn in terms of the infrastructure, he keeps on talking about infrastructural changes, but he also talks about raising the profile, which he has done in the Spanish national way. We have tried to reproduce as much as possible. We are on that journey. He talked about the increase in Spanish numbers coming over a period of many years. It doesn't happen overnight. We feel that we are on that journey, but there is much more that we need to do. Questions to get a balance on last week's evidence. Sally Johnson of the UK transplantation and blood transfusion organisation had done some work and believed that this bill could increase one end about 70 donors a year. We heard that in evidence last week. We had asked NHSBT to do some modelling. It is important to recognise that that modelling was based on the Welsh legislation. It was based on what it had done for opt-out in Wales, and the Welsh legislation is different to Mr Mac Tiger's bill. It also had to make a number of assumptions in doing that modelling. Sally Johnson said that there were a number of assumptions. The potential is that, as she said, there could be anything between 30 and 120 in the 70s about the average, but it is modelling, and it makes a number of assumptions. I do not think that we are fully confident that that would be the case. In fact, our concerns are that we might lose donors because of some of the provisions in the bill, rather than gaining. Do you say that there were 100 donors in Scotland? Is that the correct figure? She said in evidence that there were 100 donors in Scotland, and that if we increased that, we would have problems in terms of capacity anyway. We had, I think, 98 donors last year. 98 donors last year? An increase in everything, less than 70, is a big increase in 25, 34, and she raised the whole issue of whether we had the capacity to meet them. If we were absolutely certain that producing new legislation would produce that change, I would be pushing people out of the way to be at the front of the queue for that. I am not convinced overall by the evidence that there is some evidence that opting out may produce benefit, but I can give you examples of where anything to do with organ donation generally across the whole spectrum can damage, if not sensitively managed, can damage organ donation across the board. I am not completely convinced that those numbers would be increased. If I thought they were, I would be a pro that. You are saying that we should wait. Do you agree with the minister that we should wait two or three years to see how they got on to Wales? Is that what you are saying? That is what I feel that we probably should do at the moment. At the very least, we should be certain that every single provision of a bill is as perfect and as sensitively managed as possible, because there are potential repercussions from a bill that is not absolutely perfect that might cause problems. I can give you examples from the past. We probably could get improved on this, but I do not think that we will ever get a perfect bill. We have not said in two or three or four years' time that we have not put a time on it at all. I invite you to put a time on it. I am not going to put a time on it, but if, in a year's time, you can see that the Welsh situation is making a big difference, then we could start consulting on our own bill. Would it be reasonable to review the Welsh legislation in any meaningful way after a year's time and the impact on transplantation? As I say, if we were seeing an immediate increase in the number of organ transplants, and that is what we are looking at, we could start saying that there is clear evidence over one or two years, and we would start consultation on our own bill. I mean, I was going to say that the level of increase that you are saying, Sally Johnson suggested, this legislation will make in Scotland a significant, and that would be the same in Wales. If the legislation is going to have that sort of a significant impact, although you do not want to make big decisions on the basis of one year, you would know when you... What other piece of legislation anyway, unless it turned out to be a disaster, would be reviewed and could be effectively reviewed after a year of implementation? With a long lead-in for publicity built into the legislation, so they do not expect any significant impact over a year, do they? I do not think that they expect that the impact would be evident within a year, but we have an annual monitoring of data. In fact, the monitoring of data is monthly, quarterly, and we may be able to detect, to begin to detect a trend associated with it only change, which is the legislation in Wales. This is really difficult, I need to say, because I listened to your caution and your checking, and I listened also to the evidence that says we could double the amount of donors we have, and if I was somebody with a loved one waiting for an organ, I think I would be infuriated by the attitude that is coming across, because people will die while we wait. Let us be perfectly honest, and this bill has the ability to save lives. Obviously, we are at stage 1, and we have the ability to amend at stage 2. Some of the issues that the minister has brought up in her written submission to the committee are things that, on evidence, I believe that the committee would be looking to amend. At stage 2, why does she believe that it is unamendable? I also find it a bit confusing that, on one point, we are told that this bill is nothing like the Welsh bill, but on the other hand, if the Welsh bill works, you will be looking at this bill again, so you are looking at this from two different directions, which I cannot really understand. It looks like you are looking for a good excuse not to implement it, and that would be fine if it was not a piece of legislation that had the ability to save lives. However, I think that we need a better explanation, given the ability of the bill to save lives. What we want to see from the Welsh bill is if opt-out makes a difference, but this bill is very different from the Welsh bill. We believe that the role of the authorised investigating person and the appointment of up to three proxies makes the bill actually slow down the process of organ donation. In fact, time is of the essence when you are talking about this. The role of the AIP, as I said in the answer to a previous question, is a role that is mentioned throughout the vast majority of the clauses in the bill, and we do not believe that you could take that out and have a sensible bill at the end of it, but Gareth has been looking at this in more detail. It is important to think about how the provisions in the bill will work. The bill introduces this authorised investigating person, as the minister says, and the explanatory notes suggest that it could be a healthcare professional. I think that our review is that it probably can't, but even if we put that to one side, the role of the investigating person is to make certain judgments about whether or not somebody wants to opt-out or not, whether there is any evidence that somebody did not have the opportunity to opt-out. The way that the donation pathway works at the moment is that it can be quite a long process, so whether it is donation after circulatory death or donation after brainstem death, it is between, on average, 18 to 25 hours. That will happen after families perhaps being sitting with a loved one for days or hours going through a horrible time, and then they are expected and they have to wait for this process to fall. We know already that families who have authorised donation perhaps sometimes will get happy through that process and we just can't take this any more and they withdraw that authorisation. We already lose donors because the process is quite long. What we are doing essentially is nothing in the bill that simplifies our existing process, it adds on to it. In fact, the AIP and the role of the proxies which are quite interlinked, if somebody nominates one or two or three proxies, the AIP legally is required to check those proxies and their wishes first or their views first. Even if a family wanted to authorise donation legally under the terms of this bill, they cannot do that if their proxies are nominated. The AIP has to check those proxies first. So you can have a family sitting their way in and wanting to authorise and being told you can't do it because you have an AIP who has to check what the proxies want first. These proxies you can have up to three. Somebody can nominate a proxy online on the register but they can also just do it in writing. So the AIP has to be able to check wherever in writing the deceased person has notified they want to be a proxy. A proxy can decide themselves they no longer wish to be a proxy. Two off because yes that is part of the bill now but as I said we're at stage one. There is nothing stopping us at stage two to take out proxies because it's there for a very specific reason where somebody doesn't have a next of kid. They could do that by having an attorney appointed on their own behalf then. There is no some of our witnesses say there is no need to have proxies on the bill. However it seems to work well in the rest of the UK where they already have proxies two rather than three but they already have them. In terms of proxies they are very rarely used in fact there are only 15 registered proxies and they've never been used. Why would you have them in the bill and why would you and even if you took them out you know what's left in the shell of the bill if you take out as we would want the proxies and the AIPs and there's not a workable bill left? I mean you're right the other parts of the UK have nominated representatives. I think it's important to recognise that the Scottish legislation which the previous administration brought forward about organ donation came after the English and Welsh legislation so the Parliament went through a process and the government at the time I'm assuming gave some consideration to having a similar provision in Scotland and for whatever reason didn't decide to do it. As the minister says there are nominated representative provisions in the rest of the UK but only 15 have ever been nominated and they've never been used so you're legislating for something where our evidence is it's not used elsewhere in the UK but even if you took proxies out and said we don't need proxies and that could be amended you still have this function of the AIP which is an individual who has to make legal decisions about whether something is lawful or not make judgments about whether somebody want you to opt out but didn't have the opportunity and be responsible for those decisions and that will take time they'll have to go through a process to do that. It's not reducing or simplifying any of the process that's there it's adding a layer on and in particular our review is I think the assumption I think it was mentioned last time was that it could be the specialist nurses who currently support organ donation. Our review and I think Sally Johnson from NHSBT said this last time as well is that the specialist nurses couldn't do that because it would be a conflict. The role of the AIP in the legislation is primarily to be concerned with opting out and did the person want to opt out or not and making judgments about what they wanted and could we donate. That's different to the role of this knowledge which is about supporting the family and making sure that they're supported. I also think I'm not clear whether or not a health professional could do that job. If you're saying this knowledge doesn't do that and their role is directly for the family, who then checks that the law as currently formed is being followed? Quality distinction here. At the moment the snods who are not a legally defined role that's important difference, the snods make factual checks, they will fact. Did somebody express a wish on the register or not? If not, did they express a wish to the family and if not, what does the family want? They're checking facts and those facts will be provided to the transplant surgeon who ultimately makes the decision to go ahead. To purchase what the AIP would do so those roles are not? It's different because the AIP legally is required to make judgments. It's not a fact to check. My view is that this person could have opted out but didn't or my view is that particularly when you talk about proxies I will wait for this amount of time until we know what the proxy wants and if not then we will proceed so it's different and they're legally personally responsible in the legislation for this, the AIP individually. The snod is not legally personally responsible for making those sort of legal judgments. I think the explanatory note explicitly says that the AIP will check the lawfulness of the nation. I think it's that terminology used so they're making a legal judgment. It's not a, is this person on the register or not and I think that's the difference to the Welsh legislation. I don't think the Welsh, from memory the Welsh legislation hasn't introduced this sort of role. It's essentially said either opt in or opt out if you've opted out. That's known on the register if you've opted in it's on the register and if you've not opted out then the assumption is that you wanted to donate but we checked with the family. So again it's fact checking. It's not making legal judgments in the way that's described in this legislation. And that all could be amended at stage 2. I think if it was the snod that you're really putting them in a conflict of interest I mean they're really there to help the family through the process but then if they've got to have this legal training to see whether the donation is legal or not that's putting them in quite an invidious position. And I think even if you did amend it in such a way that essentially the snod was also doing this role. This investigating role which is different to what the snods do you would need more snods than we currently have. So there would be costs attached to that and we need to understand what those costs are. That's not a reason for not doing it but I think we just have to be understanding the current snod cohort which tries to attend all the donations across Scotland is already very stretched because of the increase in numbers of donors that we've had. Of course there will be costs but there will be cost savings if you take people and give them a new lease of life by giving them a transport transplant. They're not going to be so dependent on health services as they would be currently. Surely that's a saving so if you have to employ more people and I think even without this bill if you're actually looking at increasing the donor rate you're going to have to employ more people. I mean the amount of money you're talking about and the lives you can save is not huge. I don't think there's a direct read across from the amount saved that the amount that you would have to spend but I don't think the cost is the issue here. It's just the complexity of adding in the AIPs and the proxies that are not in the system at the moment and the system at the moment as we've already heard takes a number of hours where Professor Forsyth might be waiting for the organs and then you're going to get this increased legality in the system that's not there at the moment and you know you might get families at the end of it saying this is just too much of a stress in an already stressful situation and we're not going to allow it to happen and the families already in the end of the day can have the final say. John, do you want to come? I mean if I may I mean it does mean that the retrieval team has to wait for a length of time but as the minister said I think the most important thing is the families having to wait after it after an awful time in perhaps looking after loved ones in ITU and if we get anything wrong in that that is that we have evidence that if you get anything wrong in that even once then the potential for damaging the whole of organ donation is there and that is my worry. Obviously to Professor Forsyth and everybody else who is doing such great work in the field but he made the the evidence criteria opting out being the key words I mean I think when we're looking at the bill I think all we would have to establish is whether it would help along with other changes and obviously we have to look at the harm issue which we can look at in a minute so obviously I mean a lot of this has been gone over already but we were struck certainly by the estimates of NHS blood and transport we've been told about the Welsh Government's international review of the evidence and they concluded that an association existed between presumed consent legislation and increased organ donation and the organ donation task force itself found that an opt-out system could increase UK donor numbers so obviously yes it could be done wrongly but again presumably the Scottish Government would make sure it wasn't done wrongly and there seems to be evidence from other countries that if it's done correctly in conjunction with other actions it does improve donor rates so you can see that that evidence is coming quite strongly to us and we're kind of you know we hear what you're saying but you know given you know that everyone wants to increase donor rates do you not think that is quite persuasive evidence? I mean clearly as has already been said by Professor Forsythe and other people that you have had giving written and oral evidence yes we all want the same thing which is to increase the number of organs available for donation and I think what we have tried to show that currently we're doing a lot of the things that the Spanish system has done I mean Professor Matysanne said that the law change in itself is not enough and you need the infrastructure and we've talked a great deal this morning about the infrastructure and we have a lot in place at the moment but we can put a lot more in place and as a Government we're saying we're not against opt-out per se but the added complications that this bill would put in place are not the measures that if the Government was bringing forward its own bill would put in place in order to make the system better and increase the number of organs. Yeah well I mean I'm just trying to be absolutely clear what you're saying because a lot of your objections now are homing in on the bill and you're saying it's fundamentally different from the Welsh bill. Does that mean you would support the Welsh bill if somebody produced the Welsh bill? Well Gareth you've looked at both bills. I mean I think we haven't yet considered if we wanted to introduce opt-out how would we do it in Scotland I think what we're saying is I think we could just copy and paste the Welsh bill because the underpinning legislation is different but certainly what the Welsh bill has done is it's tried to it's not introduced the additional complexities that this bill seems to have introduced that we've talked about the proxies and the AIPs it's not clear what solution the prox what problem the proxies are trying to solve and the AIP seems to over complicate and over legalise a process which is just about what somebody's known wishy so although I can't say exactly what our provisions would be I'd imagine if the minister asked us to bring forward a bill of consultation we would try and make it as simple a process as possible and I think importantly as well and this is slightly off the topic but there's many other things we could do besides opt-out that we'd want to consult on as well I don't think opt-out is to be all and end all there are other legal differences we could make there are other things where other experts have said look at for example paying funeral expenses for the families who become donors now there's complex views on that but we could test the public's opinion in that other parts of the world do other approaches there's this concept of reciprocity where if you want to be if you want to receive a transplant you should be on on the be prioritised for a transplant you should be on the organ donor register now there's strong views on all sides of all these things but what I'm saying is opt-out is not the only thing that we could consider to increase donation and transplant number and I think we all accept that I mean I think we would definitely want to look at AIPs in detail at stage two but the the bill doesn't stand or fall by the AIP so we've got the message about that but I'm genuinely puzzled again in terms of the evidence we've received about proxies because I was actually surprised to realise that we were the only country in the UK that didn't have them so it's not really relevant that how often they're used or not the point is they wouldn't be used very often in Scotland but it can't be a fundamental flaw in the bill if it's introducing something that already exists in every other country in the UK but if you have up to three proxies and that that is there then all these three proxies presumably will have to be contacted and consulted before you could start having taking the organ you know having consent for the organs to be donated so that adds another complication that John Wood wants to make it consistent with the rest of the UK but I can't quite see why it would be an obstacle if it's not an obstacle elsewhere because all it's being proposed is the same system as the rest of the UK the fact that it wouldn't be used very often in Scotland that's not really the point but why have them in England, Wales and Northern Ireland I mean that's not a logical argument anyway can I move on you'd say in your you know that some people might the needs of those who may wish to opt out but who do not do so for whatever reason this may result in distress to families well families are still going to be consulted in terms of set for the very small number presumably who would use appropriate if any at all as in the rest of the UK so if the families under a soft opt-out system are still going to be consulted I'm not quite sure why that would result in distress and it's the key point not that it would change the nature of the discussion and that I mean I'm just thinking about this I'm Professor Forsyth can see I've changed my mind on this but I'm just thinking about this in terms of my own somebody was to ask me it would change the nature of the conversation and it might well change your decision that that is the essence of the bill really and so apart from the evidence internationally I just kind of feel thinking about it and the concrete situation of a discussion you would be more likely to consent in that situate an opt-out situation but you would still have the final say the family would still have the final say so why would that lead to distress for the family changing the nature of discussion absolutely but I don't think we need legislation to do that I think we've tried to do that already we've tried to make sure that for example specialist nurses are always there when a family are approached and they have a different way of approaching a family than an intensive care consultant who perhaps only deals with one potential donor every now and then so yes I think changing the nature of the discussion is important but I think our concern as we've said not to go back to the point is that if all this bill did was try to change the nature of the discussion that would be fine but our worries the other things that are in this bill which even if that discussion in its nature has changed it's happening later than is the case at the moment and it's perhaps with a family who have had to wait for an authorized investigating person to make a decision about something later than they would have otherwise and who feel that they are no longer the people who would make the final decision and I think there's an important point where if the family are still going to be consulted and ultimately donations will not go ahead if the family are not supportive of this I mean what is the point of having the AIP then we know that donations at the moment families can't overrule Ms McTarget recognises that in her paperwork but in reality it's too risky for donations to go ahead if the family do not support. Can we say aside the AIP I'll keep an open mind in that but let's just assume that we've taken the AIPs out of the bill since that seems to be the main point of objection what harm can this bill do let's leave the AIPs out a bit apart from that what harm can this bill do because again that seems to be your final argument really if this bill could do harm and obviously we would not want to pass legislation that could do harm but what harm I'm not conceding the point that AIPs will do harm but let's just assume that they might and we might want to amend that what harm can the bill do apart from that. May I come in on that minister so I suppose my concern is you describe such as a very a very clean situation where your approach and you're thinking about your own views in in these circumstances of course in real life it doesn't always happen like that there may be different views within a family there may be different views within the setting of a tragic situation that's already fraught and emotional in those circumstances and I have spoken to some people who were involved with in the organ retention scandal and they said all all we wanted in those circumstances was for nobody to presume our consent and so if at any stage we presume consent and get it wrong then the effects can be not just only in one case it can be across the whole of organ donation so so you're right I think that when we look at international evidence on on opting out legislation we see an association an association between opting out legislation and slightly higher donor numbers but if you could promise me no risk you know so a potential improvement but no risk then I would be all for that but in these sort of circumstances there is the potential for risk and I think particularly again if we're not talking just about the philosophy of opting out but this particularly this bill there are bits within this bill that concern me that that risk is dialed up slightly and makes it more of a concern for me and what what you have left if you take out the AIPs and the proxies is pretty much of a shell of a bill that would not have in it what you actually want to achieve well I mean I'm not sure why anybody would want to take out proxies since that already and the legislation until the country but last question well maybe you could answer that question were you the minister when the or the tissue bill was going no wasn't actually when the bill went through no but anyway last question I've put my cards on the table I've changed my mind so my last question to you is why have you changed your mind because obviously you did sign a motion supporting opt out at the beginning of this parliament and believe that it would lead to more more donors well what I said in my opening statement was that I am not against opt out per se or or is the government or the officials but we don't believe that this bill will do what it says on the tin and I think you having come into this post and seen the progress that's been made under the current system by increasing the number of people on the register and increasing the number of transplants by having better infrastructure and having read this bill and considered this bill along with officials and others who have given new evidence I don't believe that this bill is going to make that substantial difference that we're all looking for and I think the trajectory of what we're doing at the moment is getting to the levels that we will that we can see in systems that have opt out I'm not sure if you agree with that John the area I wish to explore has been comprehensively covered now I'm increasingly perplexed the more we scrutinise this bill I have to say I have to know earlier on the expression was used that looking for a good excuse not to support this bill I just kind of like to put on the record that I remain completely undecided in what I'm going to do in relation to this bill the simple test is if we can increase more organs and we can save lives and there's no ethical concerns and I don't appear to be any ethical concerns then we do it but we have heard a lot of genuine concerns about unintended consequences and it's reasonable to scrutinise that so in terms of the time delay we've heard about the role of proxies and the role of the authorised investigating persons it's reasonable to interrogate that a little bit more in relation to the dynamic between the snod or the authorised investigating person I can't do the most basic thing someone going to tell me what snod actually stands for it seems ridiculous we're calling it a snod specialist nurse for organ donation and I tend to call them specialist nurses because I like the time return slightly better right okay so let's just talk about specialist nurses who are at the coface having to do this job currently as we speak perhaps right now in fact um if the authorised investigating person is placed within a legal framework where they have to make sure the law has been followed could an unintended consequence be that they get a risk averse so where there's grey areas and whether the law has been followed might they back off rather than give the go ahead for the organ to be made available I don't know if I agree with that or not but we're scrutinised the bill before us and we have to robustly do that so could that be one of the unintended consequences when you introduce lawfulness and the authorised investigating person I think that there is I think as has been said already you would undermine the work of the specialist nurses at the moment they are taking an approach which is very much with the family and talking about the person who's in this critical situation and finding out what kind of life they have led and whether their organs would be suitable for donation and then introducing this legal thing which everybody kind of gets their hackles up about I think would lead to a potential conflict and whether it would lead to a new version I'll leave it to Gareth I don't know I think my worry is it's an unintended consequences if you have this authorised investigating person who may and it only takes one time for this to happen who may be seen as this vehicle of the state who's there to see whether or not our loved ones organs can be taken perhaps involving the view of this proxy who I don't know and you have one family who are unhappy about that and that turns into you know the state took my loved ones organs that might never happen but if it did happen I think there is and this is I think what John means about potential the potential for risk and we also have as I've said previously that the authorised investigating person is personally legally accountable for the decisions made under the terminology in the legislation it's about her his or her decisions his or her judgments and conceivably they could be legally accountable for that they may have to justify their decisions in court and again if one thing went wrong or one thing went badly then that there's no requirement in the bill for all the authorised investigating persons to take the same judgments on things to allow the same amount of time for proxies to come by so you would lose consistency and again you may enter into as you've described a risk averse culture that might actually lead to if not actually doing active harm it's not going to bring any particular benefits okay so that's the relation to that oh sorry thank you no I was I was only just going to say I hadn't thought of it that way I had thought of it in the way that Gareth has described of the potential for it to be seen that the state or or some organisation has forced through organ donation perhaps not fully along the wishes of the family of a family concerned but I can see exactly what you're saying that if you involve another strata because that's what it will seem you're talking to Sally Johnson from NHSBT the specialist nurses do not seem to be able to take on this real so you'd involve another strata of people and absolutely you could end up doing what you're saying which is potentially to to have somebody who is because it may it may be idiosyncratic from hospital to hospital and you could end up with somebody being perhaps more risk averse and I don't think we should ever forget the the psychological difference between giving and taking I think that's really very powerful when you think about it I mean the other thing I wanted to maybe get get your views on a little bit is suggestions been made that the bill could be amended at stage two and that from my reading of it the way you'd amend at stage two would be to take almost everything out and what you're left is presumed consent and then whatever the structures behind that seem fairly unclear and maybe we should or shouldn't do that I don't know I'm still mulling through this in my in my head but it does seem as if what we could be left with is legislation to promote a conversation on the ground at a point where families are really struggling with difficult decisions to make and for me it's about the quality of that conversation between the whether that's the specialist, nurse or whoever and the family probably from a fairly fairly early stage if the death is anticipated certain deaths obviously is very different again and I'm just not sure what I've got in my head and I apologize for kind of working my dwelling on us a bit too much but that conversation around whether someone says to a loved one like we know that your mum your dad your son your daughters gonna slip away have you ever considered donating organs it could go to good cause we know that they don't carry a card but it would still go to good cause or you slip into that wall they hadn't opted out and it would still go to a good cause I'm not sure dramatically what the underpinning legislation does to the sensitivity of that conversation it's about the quality of the conversation on the ground and maybe it is strengthened by that legislative underpinning but I keep going around this in my head and it's about the quality of that conversation on the ground and then having all the structures in place to get those organs commercially and effectively to those families that need it so maybe some comments on how we improve the quality and consistency of that very delicate conversation irrespective of whether this bill goes through or not so I think that as I commented earlier on the sort of having having put in place some of the infrastructural changes which were really nuts and built I think absolutely right that is one of the most important things that the present law as I understand it in Scotland is about carrying out the wishes of the individual and hence term of authorisation rather than consent and we have as I alluded to earlier on come a long way in terms of the way in which we go about that but our levels of consent are not at the Spanish levels that we have seen and and and I think that is about the way approach happens and it has been well shown that if people have very good training prior to going and asking for authorisation or consent that their levels of if you like consent or successful consent are much higher and I think we need to do more in that area and we need to do that now okay and I don't think that if we took out the bits that we're saying are barriers that what is left is what you would want in terms of legislation to make sure that it's actually going to achieve the outcomes that we would all want so it's kind of stripping out on your left with a shell and what's left is not what you would really want in a bill to make sure that you were going to achieve your objectives I suppose that's something that I have to consider but a couple more questions community that's that's okay next one is to have a meaningful opt out system and I have to if someone has got an ethical reason to opt out of course they should I don't personally I don't think most people would either and I think surveys have shown that but if you have a legal right to opt out should the state should the NHS have to have a annual advertising campaign to remind people that they have the right to opt out does that change the dynamic again because if you don't know you've got the right to opt out and again I put on record that I would encourage anyone to opt out would we have a duty to advertise that and make sure people have that information absolutely and I think that's recognised in the bill that there is a need to raise awareness I think there's a question about how far in advance of a bill coming into force you need to raise awareness for because we know how difficult it is to get people to opt in to public messages but also I think they will need absolutely need to be continuing marketing and awareness reason if only for there'll be an age limit on this so whether that's 12 or 16 or 18 people will be turning the age at which they will have deemed to have presumed consent if they haven't opt out there will be people coming to the country for the first time there will be students and you know other people traveling from other parts of the UK those people who may be new to the system I may not have had the opportunity to take in the message previously we will need to continue to try to reach those and in particular the children I think the children coming of age under whatever the system is they will need to be contacted on an annual basis or when they become age to say that if you don't opt out you'll be assumed to want to donate so absolutely final question and it's in relation to the finances underpinning it and I have to say if this is the right thing to do we do it irrespective of the finances underpinning it but it's reasonable to look at some of the numbers behind that so the financial memorandum I think it's been revised to 6.8 million pounds and over 10 years and the Scottish Government has some modelling work that shows it could be as much as 22 million pounds over 10 years and discussions about annual costs of around 2 million pounds as well so put that to one side a little bit but the question really is if the big thing we're hearing from Spain it's about the quality of that conversation and it's the structures on the ground to make this happen if the Scottish Government had 22 million pounds over the next 10 years maybe we're making a bid for some more money for this I have to say but if the 22 million pounds over the next 10 years to invest in local coordinators on the ground and the networking in the whole hospital of approach how much more could you do and where should we put our focus? I've never been given 22 million pounds to spend but I think it would be it would absolutely be trying to mimic the Spanish system and therefore more of the same in terms of education and publicity and I think continuing to have that drive in terms of publicity and awareness is important. I think also it's something that we haven't mentioned this morning is living donation and that has been a lifeline for so many people and in fact there is more that we can can be done there more in terms of training and more in terms of a hospital wide approach and to a certain extent I would say that we had to put in place the British version of the Spanish system in terms of the clinical input into organ donation in each intensive care unit and I think we would look to use that in a different way and I suspect that's what Raphael Matysant said when he said that the legislation can be a distraction in these circumstances unless we're careful. The 22 million is over 10 years and most of that half of that is on the AIP costs so it's not even mainly costs on publicity so yes you would rather have the money going to increasing the infrastructure. And then just to add to what John said the other thing I think where investment could benefit is there's a whole range of new technologies which I think has been mentioned previously about how we look after organs that have been donated so we know sometimes we lose organs even if they've been donated and improving the survivability for a bit of a word of organs after they've been donated there's lots of research and technology development in this area where I think we could probably do more. Can you mean on no further questions but I didn't think Professor Forsythe would mind me suggesting that if he'd 22 million pounds to spend how would he spend it but that's now on the record anyway. On the record but whether it's on the table or not it's a different. But it does just to follow up on that you know you might want to say something about the you know the targets that have been set and the strategies yet it's on going I think you referred to it in terms of publicity and other things that was the target between 2012 2013 to increase overall deceased donation rate so I mean that that strategy is there. So it's been in place since 2013 has that recently been reviewed to see if it's what we need to improve that to make sure that we either meet that target or go beyond that target what do we need to do because you know and it leads into this other question about do we need increased investment in this area to get to that that the broader issues would it be in Spain rather than nurses in the hierarchy of a hospital would it be doctor led do we need to tackle a culture of intensivists I think they were described as last week who don't see it as their role to harvest donations do we need to increase intensive care beds do we need to look at the gap of donations between whether you die in A and E whether you wish to donate or not your likelihood is that you will not be able to because you're not on an intensive care bed so what review has taken place about the government strategy and what recommendations are we likely to hear about? It's constantly under review and we look at the targets you know we get the the figures monthly but we do believe that the targets that we've set out are entirely achievable but it takes all of the things that we've mentioned throughout this whole conversation for that to happen it's all laid out in a donation transplant plan for Scotland that John has there and it builds on the progress that we've already made but we do believe that it's achievable but Gareth? You're going to tell us there's an annual review there's action points come out of that there's an additional investment or disinvestment because we've learned about disinvestment in terms of publicity so did we use that money within that that strategy to fund other initiatives so that people would find useful? We have the plan that we've had since 2013 and I think that that's reviewed on an ongoing basis Can I come back? We've had that answer. Has it been reviewed? Is it reviewed on an annual basis? Is there no formal structure other than monitoring this to Professor Forsyth? I chair the Scottish donation and transplant group and that's a group that's a group with transplant conditions on it and also those who have received transplant organs those who are waiting for transplant organs and those are donor family representatives and at every meeting and in between meetings we review action and we review figures and you know let's just take us back two years ago we were talking about a 98% improvement in organ donor numbers that the numbers have stalled over the last number of years and I think there is more that needs to be done and I've tried to highlight that and we would if we did not see a continued rise up to the 26 donors per million population in 2020 I would be the first one to be shouting up looking for in increased changes. I'm confident that you would and I'm sure you have. Now what recommendations have you made and you've had these meetings you've seen that so in order to address some of these issues what have you recommended that has been taken up and what have you recommended that hasn't been taken up? So we've recommended the issues that I mean I can go over them again but highlighted the things that that we are continuing to do within within Scotland both in terms of of the hospital the whole hospital approach as well as looking further into consent and authorisation and training and those aspects. The whole hospital approach means what? The whole hospital approach means that it's so easy for people within a hospital to be built up within their own subspecialty and not aware of organ donation and transplantation and that means that trying to look at particular hospitals and seeing whether or not we can try to spread that message across across the whole of of the hospital and use the the donation committees which are set up at a health board level to try to make sure that that is seen across the whole of the hospital. So what does that mean in terms of action investment? In terms of action investment it's for for me it's trying to to use the the staff who are now embedded within within each hospital so the embedded specialist nurse the the clinician who is in the intensive care unit using trying to increase more our emergency department clinicians who who are involved trying to increase the awareness of the problems across the across the the whole of the group. So that has resulted in an evening out that those those units within certain hospitals some of them have caught up? Yes I could I could point to certain hospitals. We progress right across the board there isn't it? No well I mean there's still differences across Scotland but but I can I can point to to particular hospitals where we have seen a significant improvement in organ donor rates over the last number of years particularly Grampian particularly Aberdeen. To respond further I mean clearly I think what you're trying to get at convener is is what are we doing now it's we've got a plan that's a seven-year plan are we then just passive and sitting back and I think as John has said we're not the the donation and transplant group which is chaired independently by John does review meaningfully on an ongoing basis but I would also point to we operate within the UK we operate we share organs across the UK we receive organs from other parts of the UK. I attend the NHSBT board meetings and I know you heard from Sally Johnston that they also have a plan and they're trying very actively to make meaningful differences and a prime example of that recently is they undertook a review of the organ retrieval teams which operate across the UK and are commissioned by NHSBT and very often because of how busy the teams are the way the teams are set up currently can lead to delays so if you have two or three teams out at the same time and then another potential donor arrives they have to finish the work they're doing before they get redistputed to another hospital in another part of the country so NHSBT with ourselves and other UK Governments have been very active and how can we make this work better and that that's happened in the last six to 12 months we have also in Scotland undertaken a review of the relationship we have with NHSBT the way in which they employ snobs in our behalf the way in which they undertake retrieval to see can we do it better and we we convene the group to do that under the auspices of the STTG and that's that's made some conclusion and I suggested that we should look for a dedicated snod manager in Scotland so we're not passive in this we have a seven-year plan and we know that these improvements take a long time even in Spain it's not a one-year change and in fact we heard recently we heard earlier that we wouldn't want to expect that Wales would make a one-year change on the back of legislation I think this plan is similar we have to give it time but that means we're that doesn't mean we're passive over the course of those five or six years yep I take what you're saying I was just looking for you know if we're emulating Spain and some of their core principles that are vinkies if it's not opt out opt in you know doctor led you know part-timer full-time organ donation coordinators in every intensive unit in Scotland you know or are we are we going down a road to build up the capacity on nurse capacity where you know I you know there is there is a big difference there I've learned from what Spain is doing in terms of the infrastructure in place and we you know we have the clinical leads in place and we have that plan and are working to it to increase so we're not doing nothing we are working really hard as has been explained in what I can happen under the present system there is a big difference between a clinical lead and an organ donation coordinator isn't that Professor Forsyne there is but I mean we have noticed I mean so if if we talked about the increase the large increase that I saw in in Aberdeen in Grampian I you know I would say that is is partly down to a clinical lead in that unit who has who has changed the focus in terms of organ donation and so I think we certainly saw when we went to Spain that the the presence of the doctor with if you like championing being that the champion for organ donation within the intensive care unit was very important and that's why the clinical leads have become key to the development you're right that they're not going to be present all of the time but obviously we have tried to with the combination of the clinical leads and the specialist nurses make best use of that that resource grampian the net not necessarily a question about grampian but I did just really a point of clarification on what Bob Doris said about opting out I mean it is my understanding that there already is a right to opt out under the human tissue legislation which was just recently been enacted is that right I mean how aware is the population of that and is that being advertised there's a point about interpretation of law so under the human tissue act it doesn't explicitly say you have the right to opt out what it says is that an individual can withdraw authorization and I think ms mc taggart's view is that that isn't a legal right to opt out and I would agree there's probably an interpretation job there for a court to decide but what we do have is there is a mechanism so individuals can under the new NHS organ donor register express their wish that they do not wish to donate and in Scotland if somebody has expressed a wish that they do not wish to donate the donation would not go ahead as to whether or not the public know about it I think what we've tried to do as of this year in light of the Welsh legislation and the new organ donor registers we've tried to make clear that our messages to the public is make your wishes known whatever they are so if you want to donate that's brilliant if you don't want to donate then I think it's important that we know that it's more important that we know you don't want to donate than if you decide not to because I think we would all agree the more people who make their wishes known the better so we haven't necessarily couched it in a language of if you want to opt out because I think that can confuse and we're worried about sending mixed messages but we've said make your wishes known whatever they are. That's very helpful thank you convene. Any other questions? Paul Doris. Just very briefly I thought that the convener raised some interesting points about about Wales as the Minister about depending on how legislation works in Wales and in the length of time that it might take for an analysis can be denied from that. Now if we look at this in terms of the Scottish Government and the NHS is looking to already develop the structures that underpin and support organ donation timisly and effectively and the role of the specialist nurses in enhancing all of that what we're left with with Wales is legislation underpinning that good quality conversation that I was asking about before. Would it not be reasonable to assume then that if legislation did empower that conversation to be more effective with the person who's passed away's family then would actually see a fairly quick increase in organ donation because once the legislation's in place once that dynamic changes if that's what is derived from putting a legal framework around it would we not see a quick turn around? I suppose what I would ask is would the Scottish Government monitor it? It doesn't mean commission a full review after a year but after one year of the Welsh legislation been on the statute books and that conversation dynamic as we are told changing would the Scottish Government look to see if there's been a significant change and if there has been a significant change would we get a pledge for action in short order because I don't think we should have to wait a number of years for this if what we're I apologize for repeating myself but if what we're saying is legislation underpins that good quality conversation on the ground then we'll find that out very quickly surely. If we see an increase in Wales and it can be put down to the fact that the law has changed yes I think we would start the process of looking up to out here and consulting on it but we've seen already that one year can be a blip and we would have to monitor whether it was simple fact that the number on the organ donation register in Wales had shot up or whether it was a complete change to the way the infrastructure is set out in Wales we'd have to monitor all that so it wouldn't be quite a simple thing but we would that's why I said at the very beginning Wales is the best example because it's an NHS structure which you know Spain and other countries don't have it's the nearest example we've got to the way that we structure healthcare in in Scotland and that's why we were we're looking to see what happens in Wales okay thank you would you feel the need to come back and apologise after a year if it did because it's all about risk here as Professor Forsyth said a year from now two years from now would you need to come back here and apologise if Wales are delivering a second would you feel the need to apologise for those people who never made it over those one two or three years because that's what you're asking no because what we're saying is we don't believe that this bill is actually going to achieve what we all want to see which is an increase in donors and an increase in transplantation and what we've said over the past hour and a half is we don't believe that this bill is going to achieve that maybe yeah i think maybe that's a safer strategy minister thank you all very much for being with us this morning oh hands hands i was i was so busy thinking about getting on and know it that seat there i forgot to give Anna opportunity to ask some questions before we finish this session and mctagar member for the bill thank you convener and thank you panel and committee members again and i'm not sure convener whether i want to just sit and cry or to ask a question to what i've heard this morning i am deeply saddened disheartened and downright disgusted at some of the mistruth that has been peddled here this morning i am appalled that some of those mistruths we are setting here's reason setting here's reason amongst some of our vulnerable people in society our needy people in society i have always stated i have always said that this bill will not resolve at all it is part of a three pronged approach and that is following the evidence from the spanish model now i will get back to a question convener the scottish government has set its target and i'll go over this again because this is part of some of the mistruths that has been peddled the scottish government has set a target to increase overall deceased donation rates from 17.9 per million population in 2012 13 to 26 million per population by 2020 in the past three years this rate has only increased by 0.3 how how are we this is part of the seven point plan we're three years into it has it worked enough we're now 0.3 we'll now to get up to 26 can the minister explain as we said that there are fluctuations in various in years we you know it's not just the infrastructure or the opt out there are various factors in terms of whether organs actually are presented for donation and transplantation and while you know we have this plan in place and we are increasing this is the the graph showing the number of transplants and the number of people on the transplant list the two are converging over time and we have seen an increase in the number of of transplantations and we are not convinced that this bill miss mc taggart will achieve the increase that you are talking about so what will minister what will well we've we've we've talked for the last hour and a half about the ways in which we believe that the rates can increase and can I ask then why haven't we done that to date because we have had since 2006 this information and yourself mr for science you have been in this field for how many years why haven't we why are we the worst in the UK for organ donation rates why should we not strive to be better why should we not be like spot the Spanish system why you you're the front man in it I would like to say that my memories of transplantation include watching people who are dying being being resuscitated by transplantation but also but also I have been at a retrieval why I have laid out or helped to lay out a seven-year-old girl who had been a bridesmaid about two weeks before and I dressed her I helped dress her in her bridesmaid dress to help and after she had been an organ donor I have seen both sides of donation and transplantation I admire your passion I am just as passionate about organ donation and transplantation I promise you I am just as passionate I have spent the last number of years trying my best to increase the number of organ donors and up until a couple of years ago we had made fantastic improvements you're right that the last couple of years have not been as good but we have many things that we want to do to try to improve that if you can reassure me and you can say for absolute certain that an opting out legislation will change things and not risk it because remember this is potentially very risky as well if you can reassure me then great but I have some concerns but I promise you I match your passion and actually I've had this passion for I think I've been involved in this for about 30 years and I take badly if somebody threatens that passion actually not as badly as I'm sitting here feeling right here right now Mr Forsyth given the fact given the fact that the Welsh Government carried out an international evidence review of the opt-out system of organ donations in 2012 that is where the Welsh that's where the Welsh Government came about that's why they they've put that law into place it was international evidence international evidence that's went on for 50 years at her way to say that they're wrong they have specifically said that some of our highest performance eight out of 10 of our highest performance organ donation rates are from countries that have opt out minister why why do you allow us 40 set the worst in the UK if you look at the sample of countries and I think perhaps some of the evidence that you're citing is from abadi and gay of 2006 where it looked at a sample of countries 36 countries 54 percent that had opt out and then looked at detailed data from 22 of those countries and that it included it concluded that organ donation rates were higher in presumed consent countries by 25 to 30 percent but this was not solely due to opt out it was due to other factors as well and what we've said already today is that Scotland is up there in terms of rates of donation it's higher than some countries that have opt out but lower than other countries that have opt out and what we're saying it's not opt out alone that makes the difference it's having the infrastructure in place and what we're saying is that sadly having taken a lot of evidence ourselves and consulted with people in the field that we don't think that this bill is going to do it and as professor precise had said there are risks attached to the bill as well as opportunities can I just ask then the surveys that has been done by this committee by myself by the British heart foundation all reckon that in the majority actually they all reckon that soft opt out should come into play now are we now saying that the British heart foundation the British medical association the members that are in your gallery today some of the transplant recipients and their families are we saying that now that's who I've took my evidence from are we saying that they are wrong well the Wales social research during the passage of their bill sought to update the work of 2006 and it concluded that although there was an association I quote it cannot be inferred that presumed consent causes increased organ donation 50 years of international evidence convener 50 years of international evidence to prove that it does work I can't foresee consistently I can't foresee this not not happening and I'm dumbstrucked as to why the Scottish government would think that just by sitting back and resting on my laurels that we're going to increase organs point of view wish before I close the session yes convener I think we all want the same thing but we want to make sure that we do it absolutely correctly and you know we john for sight and I and gareth have sat for a long time speaking to other people and we don't believe that the complications in this bill will lead to the outcome that we all want and we're very fearful of that because of the the complexities of the EIPs and the proxies as we've discussed quite a long time thank you all for your precious time this morning and the evidence you've provided suspend at this point till we get the next session up running and get those witnesses seated thanks very much to continue your evidence can I welcome or just wait a second that people come back we now continue your evidence and can I welcome on McTagar MS MSP member in charge of the bill Diane Baugh senior assistant clerk non-government bills unit and lees miller solicitor office of the solicitor of the scottish parliament can I invite the member in charge to make an opening statement before we proceed to questions thank you thank you convener and thank you once again committee members and thank you again for your patience good morning everyone and I'm here to talk about and thanks for inviting me to to give my evidence on my bill the transplantation authorization of removal of organs etc scotland bill this bill aims to increase ultimately the number of deceased organ donors in scotland and save more lives the committee itself has met with organ donor families and transplant recipients to understand the impact on their lives of waiting for an organ donation or receiving an organ donation any of us could find ourselves in a position where we might require an organ to improve or save our lives or find our loved ones in that position and despite the improvements to the NHS infrastructure additional resources and an annual publicity campaign by the Scottish Government unfortunately the demand for organs still far outweighs the number of organs being donated there are currently 571 people in scotland waiting for a transplant although I have to add that this number does not include the large number of people who become too ill for a transplant and are then taking off the transplant waiting list as a result three people die each day in the UK who are in need of an organ transplant convener this is far too many many more face years of ill health often with no guarantee of there being a suitable donor people in scotland deserve better over 50 years of evidence shows us that a soft opt out system of organ donation works there is absolutely no reason why scotland could not be amongst the best performing countries in the world for organ donation there is a lot of support for the soft opt out system in scotland 80% of those responding to the consultation on the bill supported the proposal and your survey results also showed that there was a majority support for all of the bill's proposals the bill aims to convert that support into donations ultimately the committee heard of the improvements in the organ donation rates since 2007 and the Scottish Government argues that we should therefore just continue to do what we're doing the improvements are welcome absolutely welcome but we need to start the we're starting from an extremely low rate at the time however as we've heard this morning the data for the last year is not so positive with reduced numbers of deceased organ donors and transplants and an increase in family refusal rates the Scottish Government takes a view that doing better than it did in 2007 is good enough but with respect convener should that really be the extent of our ambition here in scotland this is not a party political issue and has never been this is about solely saving lives please please consider the impact that this legislation could have on people's life opt out legislation is not the only solution on its own but i believe that it must be part of the solution let's shape this bill together and make it the best bill the greatest opportunity to increase organ donations and save lives and give those 571 people awaiting organ transplant the gift of hope thank you and good morning you've sat throughout you've sat through you know many evidence sessions and you've heard the evidence as we have one of the areas that you cite yourself is the international evidence and there seems to be some dispute to some extent that what you're citing and what the government are suggesting are two different things why would that be i mean you're saying that the international evidence is clear that the opt out system works but the government are saying and there's also evidence to suggest that it doesn't who's right thank you mr robertson for your question 50 years of evidence international evidence has been placed towards the Welsh bill and they have taken that evidence to make the bill what it is and what it what it is today because it started in the first of December mr robertson see if you don't want something to go through you can pick holes in it and you can have 22 pages and throw the kitchen sink at it you can do whatever you think is best but i am not sure if the international evidence why we why we wouldn't accept that we accept it for other bills that we put through i'm not really sure sorry okay that's fine um can i first of all perhaps say that like you and i think like all other members and i believe from the what we heard from Professor Forsyth and the minister today i think everyone is saying that look let's find a way of getting increased donors which then results in transplantations and higher survival rates i think everyone's on that same page i think there seems to be some difficulty as to how we get there you and you're suggesting that soft opt out is there um and you believe that that will improve the situation the government are suggesting that it may not and Professor Forsyth seemed to be concerned that there was a slight risk averse aspect to it and we it may result i think it's a suggesting that it may because i don't think anyone can be definite here may result in fewer donations and that's where the concern comes from given that he has many years of experience and and given i think his passion and i think he was gave an example today is to it's not an easy process for him and his team do you not accept that there may be some risk averse aspects to the soft out system absolutely not i think mr robertson um with the system the the soft opt out the bill that's in front of you today gives clarification to the people we will always find people in our society that will never ever want to donate their organs and that is absolutely fine that is absolutely fine we live in a big world we have to respect other people's wishes also if you do not and never will want to donate your organs this gives it an easier option for those people it clarifies things your family will not be approached if that be the case that was never my intention of putting this bill together my intention of the bill being brought forward is to increase organs available yeah um i you know and i accept absolutely 100 percent that that is your intention and i think i would hope that you know with the type of questioning that we have here with you is we're not suggesting that you know that we shouldn't be doing that i i think everyone is saying that we need to increase the donation i think our job is to to look at as to whether or not there could be any risk and we're hearing hearing some contrary evidence to that do you believe then with the current system that people can still obviously opt to register in and with the soft opt out do you believe that that then presents the best possible opportunity to increase organ donation absolutely um i think some of the evidence that was given this morning about that some of those risks that that you present we have looked at some of that international evidence and looked at why they think or they felt that that it just didn't work for them we have to have public buy-in we have to have we we just can't sit in our ivory tours within Scottish Parliament and decide laws that affect everyone within Scotland and and not have any consequence to that we have to listen to what the public people what the what the people say and what we are saying is what i had to try and illustrate earlier is we have done research we have looked at straw pools we have looked at we have taken evidence from the people out there we have taken evidence from some of our consultants and i i have yet to come across and there has been and there always will be people against organ donation and that's fine but i'm saying this gives them a safer option for that to happen we do have to have public buy-in and we do have to it's a three-pronged approach now we have to have the legislation in place we have to have the advertising we have to have the education also people need to be aware of what's involved and they'll also need to be aware of their the good that they will be doing for others i think the gift of an organ with the respect to the hope that it's going to save another life is something i think we all admire can i can i be asked finally convener if it was just a two-pronged approach the education and an awareness do you think that would work without legislation do you know i've actually been hoping and praying that it would work but it's not work to date so i'm not really sure why it'll work from here on in and given that the drop in figures over the last year and a further drop looking into next year i'm not i'm not really sure that that's working if it did mr robertson i would be more than delighted that that's i would i would rather not be here no offence convener but i would rather not be sitting here presenting this this morning but unfortunately i am here and we have to look at this bill as a serious option and the only option for moving forward with along with education and advertising thank you convener i'd like to start by commending an mc taggart irrespective of whether or not the bill receives receives the scent of parliament i think it's brought a much needed focus on this area and a very valuable discussion but it seems to me that the essence of the bill is the soft opt out and the committee have heard evidence that some aspects of the bill are problematic and and give rise to concerns what i'm wondering is is to what extent ms mc taggart would be prepared to accept amendments to deal with some of the other aspects of the bill that are problematic we heard the minister talk about if that were done that would leave a shell of a bill but it seems to me that things can be inserted as well as removed by amendment and i wonder and perhaps it's something that lewis miller may care to comment on to what extent can we as a parliament accept a caterpillar of legislation and at one end of the process and give rise to a butterfly at the other end of the process what are the the technical and legal limitations on that process answer just before i bring in lewis mr mckenzie i have stated from the very outset this is not my bill this is our bill i want people to know and i have stated in the whole process all along if there is amendments to make let's make them let's make this the best bill for the people that require it the people that aren't here don't have the privileged positions that we do have for to vote on such legislation let's make this the best bill this is not tablets of stone i am not sitting here saying well i'll just refuse it all if i don't get my own way if the government came tomorrow and said yeah that's fine that is absolutely wonderful i have been hoping and praying that they would because i want i do not want this to turn out to be party political nor do i want it's not a bit it's a conscience it should be a vote of conscience and people should be looking at the hard evidence like us have done they should be looking at the hard evidence so sorry that was a long answer i'll cut it short so i am up for it's our bill not my bill sorry grabbing the reason and she'll give you the technical jargon to go along well hopefully not too much jargon just the technical answer i suppose i mean so long as amendments meet the criteria for admissibility and the within scope they're not wrecking amendments all those other things then you know that there's no reason in principle why the bill can't be amended as as extensively as as parliament wants to amend it i think that for example that the issue with authorized investigating persons i don't think it's possible to get away from the fact that even if you remove those there will still need exercises of judgment will still need to be made and the Welsh act provides for exercises of judgment to be made it's just less specific about who's making them so i guess that's a that's a policy call there about whether having a specific role for an authorized investigating person is the right way to go but yes in principle all amendments are possible thank you thank you convener excuse me on a point of historical classification you've mentioned several times this morning about 50 years of international evidence it's actually 50 years i'm sorry to say since i qualified in medicine 50 years this year and at that time i wasn't aware of transplantation anywhere in the world i just could you give me any evidence for the early evidence i'm just intrigued by that we have some some of the evidence that we have taken from have been spain crewasia malta belgium portugal franz austria estonia slovenia we have taken evidence from all those countries that are they are well in advance of of our figures in fact really well in advance of our figures and are some of eight of the ten we have looked at eight of the ten best performing obviously we've looked at other ones that haven't done so well and you have to learn from mistakes also so that's some of the countries that have been researched transplantation actually started in some of these countries it's just purely for historical information because i don't i don't recall it much before say the 1980s i wish i wished i was such an anorak that i would know from my mental mind that from each country i just know that we have looked at evidence that has spanned over 50 years obviously some of them may well have only started five years 10 years ago not all of them have some of them have so i'm sorry but i could get that detail to you if that was required when they had started initiated the soft opt out system i suppose it's not that important but i just found it very interesting no no if you find it is important we could get that information to you grant when you were drafting the bill did you foresee different roles for the specialist nurse and organization and the aip or did you foresee that that would be the same person but carrying out a role slightly differently because the bill changes that conversation that people have stand when we had when we were putting it the bill together we had looked at obviously the the the Welsh legislation and the northern Ireland legislation and it's looking at that they're not of two different people the aip's are not of two different range of people that's not a different person but what we have done and what we have seen is the senior we don't like calling them snods so we'll call them specialist nurse and the clinical leads for organ donation have looked and with we have looked at those those roles just now and there's not that much of a difference and the Welsh and i'm not really sure why in Scotland we would have a different role a different person to do a different role from what other the UK is is is putting forward Ireland would have the same person Wales has the the senior nurse the specialist nurse sorry i'm not really sure why we would invent another layer of staff to enable us to do that but what we have done in the bill is set aside 0.5 million pounds for enhancing that role that they currently do just now and that would be done through post qualifying experience that would be done through education and that's what's currently being done for the Welsh Government that came in act on the 1 of december so i'm not really sure why we would we would be different and you would be happy with amendments at stage 2 to clarify that role to ensure that it wasn't an additional layer of bureaucracy put in the system because i think there was a concern that if there was an additional layer of bureaucracy then it would slow up the process and sometimes the longer the process takes the more chance of families deciding against it just because of the situation they find themselves in we work under just now we work under the British is the UK transplantation so i'm not really sure why Scotland would be any different from i don't know why we would put in an extra role there an extra structure or tier of staff to enable us to do that it's the same job it's the same role as what Wales is doing it and what northern Ireland is currently putting forward within their bill so i'm not really sure that we would want that to be any different but yes further clarity on that is welcomed and obviously i could i could give you further clarity on some of the research on that as well thank you thanks you know i think it's maybe worth pointing out that if someone doesn't agree with he doesn't necessarily make it party political and that i don't know how i'm going to vote in this process i really don't on and i'm not picking holes in the bill i've got a responsibility and a duty to my constituents to robustly scrutinise the proposals contained within this bill and i think that's reasonable to say and obviously i want to do that scrutiny just now now you said you're open to amendment in relation to authorised investigating person understand specialist nurses aren't particularly keen to have to have that role it could be an additional layer do you now have concerns over the role of that that individual absolutely not given the fact that the Welsh Government are putting could i put it back to yourself then mr Doris why would that be different from anybody else in the UK it's the same why why would we have a different structure ms mc taggart could i could i just point out that i don't know how i'm going to vote in this bill but i've asked the question so and the reason for asking the question is you've said that you're open to amendments of course and one of the most significant aspects that's been debated is the authorised investigating person and you've said that you don't believe there anything wrong with the structure you're proposing that would lead me to think that you're willing to amend the bill to something that you don't think is particularly a good bill i'm trying to be clear for it as you think and why you i mean i'd been clear as to why you would wish to seek and agree to amendments if you didn't agree with the amendments so maybe if i could ask the question another way do you see anything in this bill that could be improved upon and do you see any weaknesses in this bill mr Doris i have brought this bill to the table to ask for people's views for people's opinions for people to share those ideas for to make this the best bill that it can be to obviously to increase organ donations now to look at amendments some of the government's 22 pages of their response entirely contradicts itself so am i looking for amendments yes reasonable ones yes i am totally open to that to be happening right okay so i'm generally conflicted because you believe the role of the authorised investigating person is absolutely fine as it is you don't think it should be changed but you'd be open for an amendment to change it what about the role of the the proxy do you think you've got the balance right on that is that something you would consider an amendment on we have looked at that and other within the UK there is actually we have asked within the bill that there be three proxies we are looking to amend that possibly to two and that would be in line with the UK system as it currently stands just now okay i'm going to go through another thing within the bill as my understanding is at the moment in relation to the existing legislation under the human tissue scotland act legislation anyone over the age of 12 can currently explicitly opt in or opt out of the system i think 16 is the threshold you have within this bill is that something you'd be seeking to change or are you content with that we had we had done some work mr doris on this with the scotland youth parliament and had looked at some of the research behind that now they were hugely involved in putting this bill together as well and we've looked yes it is 12 just now Welsh Government are looking at 18 but we've looked at setting the age limit as 16 as this is the age at which people acquire many other legal rights within scotland so that's why we've said 16 but that we've not really we've not had many objections for that to be anything else so i'm not sorry i'm not i'm have an answer to question i really just ask i suppose what i'm trying to paint a picture of is each individual part of this bill yes it presents an opportunity but it also potentially exposes the current system which is improving not the last couple of years i get i really get that on to risk as well as opportunity and proxies have been laid out as a potential as i've been a risk there the authorised investigating person has been pointed out as an aspect of potential risk there in terms of changing the age by which someone can can deem their view to be expressed could be said to be a risk there in terms of of rights i'm trying to paint a picture where we go through the bill and most of the bill kind of dissipates a little bit so i'm quite keen to get where you see it would be important to have amendments or would you be considering what you think the principles of this bill are if there were to be amendments and i'm still not really sure where you think any weaknesses are on this bill and i don't think it was the government i think witnesses have genuinely who all want to increase the levels of organs that are made available to save lives and improve the quality of lives see that there perhaps are some weaknesses i'm just trying to tease out where you think they might sit we have taken we've put this bill together and we've taken the evidence from i'll say again the british heart foundation the british medical association and some of the organ recipients and their families other organisations that are working at the front line and also the scottish youth parliament we have looked at and some of these whenever i had said earlier that we've looked at some of the evidence that has been taken there was 67% agreed that the age limit should be set at 16 also they had for the proxies just for to go back on the point on the proxies also there was a concern raised from the scottish youth parliament that young people often looked after and accommodated did not have an extra kin or did not have someone or even family members that that you know would have disagreed with your decision so that's where the proxies come in and that is in line with the uk system as we speak 16 we are looking at this parliament for people to be voting at 16 we had put 16 down as a marker because i always see that the scottish parliament are way ahead streets ahead and we are out the front runners and we're up for making a difference in this world so why wouldn't i be ambitious to think that 16 year olds wouldn't be allowed for to make that decision i think the rights currently set at 12 which i think is the point with parental consent yeah yeah that that was been made um okay now once we strip all this away my personal view nobody else's view is this is about yes the structure that needs to be in place but it's that good quality conversation on the ground from the appropriate healthcare professional and a family do you think that giving a legal framework to that makes the person delivering or having that conversation more empathetic or more sensitive because i just feel i mean i might vote for this i keep saying i just think there's a disconnect between putting a legal framework in there and having that good quality conversation on the ground is it is that list a reasonable suggestion that i may can certainly is a reasonable suggestion it's obviously one that i have thought about greatly however when we look at what we're doing today and is it raising enough organs is it raising enough awareness is it raising um are we saving enough lives no we're not so let's try and do something different think out the box just try and and promote organ donation as best as we can but also when we looked at the some of the Welsh information has came to fruition that people have been asked over the last two years has your your awareness been raised on organ donation yes it has 80 of them have what we aim to do is make that conversation no one ever and we have I've trekked around the whole of Scotland no one ever wants to have that conversation around our kitchen table this fact um whether that you know what we want to do with our organs or or life after death it's not something that in our Scottish culture that we aim to do that we just it just doesn't happen we would rather shy away from that conversation but i have looked at some of the heartbreak and some of the the family refusal rates that i think it was the British heart foundation have done some work on this they were looking at families when they got to that stage in heaven forbid that they're there that they didn't actually know what their loved ones actually wanted for them to happen so just in case they made the wrong decision they would sway not to allow organ donation to happen rather to allow organ donation to happen now there has been studies on that Mr Doris and that's where i have taken my strength to put within that and it's the most distressed i mean i can't actually think of anything more distressing than you having to be there in that situation but then having to make a decision that you actually don't know what your loved ones actually wanted i think it's an easier it's an easier conversation it's an easier not that it will never be easy it's but it gives the family a step for a hint it allows the families to have that conversation people will rightly know and it's not comfortable but people would know then within your family if you did want to organ or certainly if you didn't absolutely no way i mean sometimes politicians are allowed not to know i genuinely don't know whether it would change that dynamic or not so apologies for going back to the the structures of the bill again it would appear i'm guessing that if this bill was to progress it's likely to be significantly amended that could quite dramatically change it's either filtered so there's very little left to it which brings us back to that conversation that that i keep parking back to or it's dramatically amended in which case i suppose the bill is so dramatically changed from as it's presented to parliament that that wouldn't have been consulted on so would you have any concerns about if the bill was to be dramatically changed whether or not that would have to be consulted on further mr floris i i aim to go back what i said earlier i would rather not be in this position and if i thought for one second that it was working just now i wouldn't be in this position i've got loads of other things that i could be doing it's not working just now and that's why i've brought it forward if you are saying if what by what you're meaning is if there's a different way on how to do this if there's if we fillet it if we add something in if we take something away see if you are able or or anyone is able to to come up with an idea that's going to be increasing organ donation rates bring it on i'm up for that can i just say mr taggart i think would all say bring it on if if we could all be assured that this will save lives dramatically increased or even marginally increased amount of organs available um but we have to test the evidence one thing is for sure though irrespective of how this bill does or doesn't progress the service you've done the community who are waiting and the families that are waiting for for organs is a huge service to them and others because that simple act of putting this in front of everyone and raising awareness will make more organs available in itself and i do and i do really commend you for that and thank you any other questions committee there's a couple just to address just to balance the the evidence um i suppose the general question is given that there's been a lot of focus in wales why didn't we just bring forward um the same bill as in wales that easy convener but yes can louise give you some technical answers on that that's what i was looking for the funds between what just because you thought i was swinging wheels has implemented that the answer basically is that the the legal background is is different um in what what we have in scotland at the moment is the the human tissue scotland act 2006 which um covers removal of organs for for transplantation and also for any other purpose research clinical audit all those other things post mortem it's it's quite a large and reasonably complex piece of legislation and it is completely different from the existing legal framework in in england and wales prior to the welsh bill so the way this bill is proceeded is is to amend the 2006 act obviously only in relation to transplantation only in relation to um deceased donors and only in relation to adults but it's it's it's it's kind of a series of limited amendments to the legislative framework that we already have and it's because that legislative framework is is different on either side of the border that we couldn't just copy out the the welsh bill it would have been great if it was that easy it would have been much much quicker to do but it wasn't feasible on this column or it's it's more aimed at uh legal um the argument and it's thanks for that it was actually something that came up in a private meeting and i congratulate you for bringing this forward i don't think there's anybody who doesn't disagree there should be more organ donations but one of the things that was brought up in a private meeting so i can't say who it was but uh it was really in terms of the you know i've written down here it just came to mind in terms of the the organ donation is is a gift as has been said so far it's something that people have agreed to do and whatever and i was asked if i could find out if is there any other thing that we know that there is a presumption that the state will effectively take control in this case of an organ to take whatever it is forward anything that's similar because this is presumption in favour of is there anything out there that actually presumes the opposite or the same you should say it's not really quite a presumption in favour of me i know that in terms of the way the public are going to see it it probably is like that but it's it's more an alternative route for removal of organs which is authorization by operation of law and a specific set of criteria that have to be met before you can have authorization by that route and there is a very limited presumption in the bill which is a presumption that there is a reason that there was a reasonable opportunity to object if a residence criterion over a certain period is met that that can be rebutted by by evidence that shows that actually the person didn't have a reasonable opportunity to object but what the bill actually provides is an alternative route for authorization which you can only go down if you meet the qualifying criteria for that and it doesn't remove the other routes to organ donation though those will still exist it will still be possible for a person to opt themselves in under section six of the 2006 act so somebody who wants to positively give the gift and does get around to to doing something about it can expressly opt themselves in that will still be possible and it will also still be possible for the for the nearest relative to authorize removal under section seven that that's not being taken out of the 2006 act so it's just providing a third parallel route to organ removal which you have to meet certain criteria to use we've heard in evidence i think we have dealt with much of the issue in and around the proxy but we've heard in evidence that there's a concern here and that concern rightly wrongly that this proxy could be used over the wishes of the family which in turn would have a negative impact on on the level of the nation so give me an opportunity to to to respond to some of that evidence thank you for that yes and we have heard some of that being peddled out there has under the bill the proxy decision to to authorise the removal of organs for transplantation or to refuse that authorization is decisive that is it cannot be overridden by and other relative by the nhs staff and practice have ever that's today's current nhs policy is not to remove organs even where there has been authorized if it would cause significant distress to the elatives now convener i don't think we would want to put our clinicians in any sort of and nor would ever want to be put in our society into any sort of disarray the family's wishes will be granted but can i just place on record just now that is that is the current law just now that and we don't put that into practice we don't put that into practice we wouldn't i wouldn't foresee any clinician overriding if the family had been so distressed there will be clear clear as there are just now clear instructions and clear lists of that obviously they would have to go down and check off on the way i mean i think the concern is that that that this legislation if enacted would change that type of approach that's the concern from some of the evidence that we very convener we also have heard concern from people that most definitely want to donate their organs and their family member has they know that their family member would go against that if they passed away before them so we've also heard that evidence as well that they have they also have the right to have their wishes granted as well so what is that oh sorry and and that would mean then like that they would specifically place that in a proxy for that to happen however clinicians will not and they don't to date so that wouldn't change they won't if there's a family so distressed why that we wouldn't jeopardise we would not jeopardise this whole scheme for to to let families be distressed and be upset about it and if it was just going to be so distressed and the clinicians wouldn't wouldn't proceed as they don't just now well the question is then why why if it wouldn't be enacted why would we put in the law that that circumstance would apply that a proxy conversation convener it's a different conversation in a sense that it would enable it would I think it was yourself mr Doris who mentioned earlier it was about empowering the staff empowering maybe it wasn't sorry the specialist nurses it's about empowering the clinical leads on organ donation it's enabling them to have the power behind them for to say well it's a different conversation if you were going into a family room to they wouldn't be saying you know the conversation that happens it would first of all be are you aware that your loved one had any objection because they were on the register now that conversation would be different now it would be a different approach it would be different and it would be different in a sense because when we have just now family members that that we have a huge I think it's 46 or 47 family refusal and that's simply we have looked at that the british heart foundation i've looked at some of that evidence and that's simply because we actually aren't aware of what our loved ones would want to happen so we have to we have to try and address for that to be eradicated obviously if the that you had opted out the family then would be approached because that is hard and fast it would be a different conversation it would empower the staff to move forward and from some of the the Spanish evidence as you're probably be aware that they have had the and some of the other evidence that we've had internationally they have had the opt out system and know that will not be the silver bullet and know that will not just be the be all and end all we do have to have other things to be put in place there to increase organ donations on this yes yeah i guess that's the bit miss my target i'm still trying to get my head around about whether there could be unintended consequences or not because if we need to have another the bill reflects you can only exercise an opt out if you're aware that you have that right to opt out so therefore there has to be a degree of promotion around that and people who opt out is my understanding please do correct me if i've got this wrong that would be a hard and fast opt out if if they've opted out so that would be one side that says there could be in theory less organs available in theory i'm not saying there would be right but but that proposition's been put and then the other side of it is you believe that the quality of the conversation between the nurse specialist and the family will be so enhanced by having this legal framework that that would increase the organs so that would outweigh the risk i suppose what i'm trying to tease out is do you see any risk at all in relation to this so for example if if there's a i don't mean a campaign but if there's an awareness raising initiative to say look this is new legislation you can opt out if you want and that has to be refreshed from time to time and some people decide to opt out that would then become hard and fast should tragedy happen and the person is no longer with us so you have that so that would be a risk potentially but you think that this will be offset by a dramatically improved quality of conversation which is the thing i've got the issue with whether it would dramatically improve that quality of conversation but do you accept that there could still be a risk though mr doris um i think they'll always be risk whenever we're talking about some issues like this and there's risks just now and i think they'll always be risks and and yes you're right you're exactly right it's about how we try and mitigate some of those risks when we look at just i know i know i know and it's far too soon for to be seen but can i just say the welsh government have initiated their opt-out and they've had a two-year running publicity campaign to that can i just say it's very we're in single figures the amount of people that have opted out and do not want to be part of the organ donation register and made it quite clear and that's when i had mentioned earlier like they'll always be we live in a country they'll always be people who'll definitely no matter you wouldn't change their minds on it so they'll always be that set of people that will opt out and i think that just gives them an added security that their family members shall not be consulted okay that's helpful thank you very much okay two two final questions i'll combine them and the question of the denish we're looking at the soft out option and it's something that you know for for many years you know i've actually been a supporter of that's a presumed consent is it not but we're still going to have this conversation because we need to be sure that if we're the term generally is harvesting organs if we're going down that road the conversation still has to happen and family and indeed i'm not sure i would hope not but is there not the risk that someone can overturn that just with the conversation because we know that it is a distressing time for families very distressing time for families um and at that point in time a if the family at that point in time says well no um i know they haven't but they had changed their mind does that conversation is a not the possibility that that might happen and i know we can introduce proxy but surely at one point if the family and as you think you've suggested is so distressed that conversation might not happen absolutely mr robertson and yes you're exactly right that again there will always be risk and it's about how we manage that risk and about how we set this bill up to enable an increase in organ donations um we are we have looked at um can i just state i figure there's 46 i think i mentioned it earlier 46.1% of family refusal rate and this is increased it's increased actually by 7% this just this year and i i and others believe that that would be down to the the family members being unaware of the person's views i hear i hear you mr robertson and i hear i do not think that the risk would outweigh the benefit um at times but obviously that's what happens just now that's exactly what happens just now and we do not want to jeopardise other people and to to sign it up we would be increasing our awareness we would be increasing our education we'd be increasing our advertising even the discussions around the kitchen table which are far more important than any of what i've said earlier far more important than that we would be increasing people's wishes people would know within families we have to bring this conversation to our families first and foremost and i think that the only way in doing that is by putting this legislation in operation i hear what you say about do you know is it is there a risk there is always a risk and i think that you know there's people getting paid loads more than what i am and that have been in the business loads more than what i have been um that makes those decisions and they currently make those decisions and i think that actually gives them some security and some strength and some empowered voice at this bill would give them for to make that those decisions two final just to cover the areas um in terms of residency um it suggests the six months resident we have had some evidence that that a year would be better given you know the complexities that can arise through through this why did you decide on six months the six months should provide enough time for people to become aware of this opt off opt out legislation and to take action to opt out if that was their wish six months is considered to be long enough to give a reasonable opportunity in most circumstances now we heard evidence from i think it was mr mckenzie from the committee we have we all have a responsibility to know what the laws of of the countries that we perhaps work or or visit or join or take residency within we are we have been working on the six months part of it that that in itself if people don't feel that that is enough time we have to look at that and that's a conversation that i'm willing to have convener it wouldn't be fundamental to the success of the bill would it if it was a year or six month i don't foresee that member shaking her head sorry sorry no i don't foresee that being just on the question of cost there's been your different views on the cost a scottish government have stated in the financial memorandum that the you know their costings remain accurate and there was particular cost associated with the relation to the role of aip etc so i just an opportunity to put on the record your response to the the cost implications of of of the bill it's against you and you and the other thank you convener as outlined in my letter of the 29th of october to the committee the estimated cost of implementing this bill is 6.8 million over 10 years it is not 22 million as there are no recurring publicity campaign costs this is covered currently by the scottish government's obligation under section 1 b of the human tissue scotland act 2006 to and i quote promote information and awareness about the donation for transplantation of parts of a human body and quote there are no costs for aips as i have viewed this is is not a new role there will be costs for training and i had mentioned earlier that i've estimated that on 0.5 million the scottish government's estimate of 22.2 million over 10 years is at odds with the rest of the evidence received by the finance committee where the majority of the stakeholders agreed with the estimate in the financial memorandum so far the welsh costs have been verified as actual costs and they are on target and i'm aware that we're still in early stages so yeah but i just thought i would get that in there and they are implementing the welsh legislation within the allocated budget of 7.5 million okay if there's no other questions can i thank my target member for the bill and the representatives from the bills unit and the scottish parliament solicitors thank you very much for your attendance and evidence this morning thank you that concludes the business of the hope we're going into private can't go out here quick enough we are indeed we're going into private session for five or ten minutes he can set you there