 Welcome to the 29th meeting in 2018 of the Health and Sport Committee. Can I ask everyone in the room please to ensure that mobile phones are off or switched to silent, and while it's very welcome to use social media to use devices for social media purposes, please do not film or record proceedings as that will be done for us by Parliament. The first item of business is consideration of evidence heard today in informal sessions on the human tissue authorisation, Scotland Bill, and I'm delighted that a number of those who gave that informal evidence are in the public gallery this morning. The committee heard evidence from three groups from people who have received donated organs from family members who have authorised the donation of organs and from people currently on the organ. Although we will move shortly to take formal evidence, I would ask colleagues to feedback, please, on those informal evidence sessions. Emma Harper Thank you, convener. We had an interest in small session, Brian Whittle and I, and some of the themes that came out of it was that education is really critical to engage families and potential donors to record their wishes on the organ donation register. The issues around presumed consent is that generally was supportive, but I think that the critical goal would be that we would engage people as early as possible or as at certain ways to actually get their wishes expressed. We did have some discussion about economic arguments, a little bit about the cost benefits of organ donation versus dialysis costs, which was an interesting side topic that is included. One of the questions about how important is it for you to know that an organ is donated as a gift as opposed to presumed consent was that the feeling was that an organ is an amazing thing to be given. The donor information is not often as clearly sought, but any organ that was available is welcome. For me, the overwhelming message was that the public understanding of organ donation is very poor. What is involved in it, what it means in terms of the lifespan of an organ when it is donated, especially if it is a young person, the likelihood is that they will need two, maybe even three organs throughout their lifetime. That was a big message for me, so the education, as Emma said, jumped out. I was not quite expecting that one of my questions is around presumed consent, where the tension lies between presumed consent and having an opt-in at the same time, which was quite an interesting discussion. I repeat some of the points that Emma has raised, which our group also had, just to put on record our thanks to the individuals and the families who came along to speak to us today. There are some specific points that I picked up, particularly around conversations, which hopefully the bill can take forward with families across Scotland. It is important that we try to have these conversations with our loved ones and have the conversations and express our wishes ourselves. There were key points around the future public information campaign to be held around that. As Emma mentioned, keeping two key principles, one of a gift of life and family decision making being included, was highlighted. There were a few points that I thought were worth developing. One was about the advance directive of someone to make that view known. I thought that that was something that we had not looked at in as much detail as we should. On that point, complex relationships and changing families across Scotland were not necessarily clear in the future who a next of kin is. That is something that we need to look at. Finally, I thought that it was worth putting on record the experience of the key professionals and the organ donor nurse teams. It was absolutely excellent and everyone who we spoke to today outlined how good they had been and the support that they had provided. The group that you were talking to was families who had authorised the donation of organs. Were there other members in that group? Keith? It was really interesting and thank you to those who came along. It was quite a difficult session and it was really helpful. Some of the issues that it raised for me were the possibility for families themselves to be defided on the question if they were putting that position and where lies the interests of the donor in that circumstance. The burden of the extra 24 hours was mentioned by a number of people, which has to happen. One woman in particular put into that situation the best way to describe it is in a bit of a dwham. She was thinking that she would not deal with so much at that time. Is it fair to people under that situation at the time? The other aspect was the idea of a gift. Is it a gift if the state has a pre-emptive right to those organs? Is it a gift if it is given by somebody other than the person whose organs they belong to? It was difficult for the families, but the point about the gift is that the way that is currently done in terms of the medal and the recognition and the information passed to the donor's families about where organs have gone was really appreciated. Whatever does happen in the course of this will not be lost. I think that it has been very well covered by Miles and Keith's issues, particularly about the gift. That was one that came across strongly. One of the areas that I explored was the pre-death procedures as well. The 24, 36 hours in between was quite a harrowing time for the families of the people who had deceased. While they were brain dead, I did not realise either that in some aspects of it they were still breathing. I thought that it was very moving the evidence that was given. I must thank the families very much. I think that is something that we need to explore. People are not educated enough on that particular one about how you have to preserve the organs and the differences there. For me, that was one that stood out, but Keith and Miles have raised some really good points as well. The third group was people who had received donations of organs. I was privileged enough to be part of that discussion. It was, again, a very moving discussion and one that really put a clear focus on the lived experience of patients who have waited sometimes, a long time sometimes, a short time but an intensive care for an organ donation. The way in which different individuals respond to those circumstances differently and there is no right way to deal with that, but clearly there are a variety of ways in which people do so. I think that that was a useful and informative session. Alex, did you want to? Thank you, convener. It was very moving, as it was equally inspiring. I think that, for me, the takeaway was definitely the lived experience, as you described. That is the reality. It was quite a stark reality of how little support we offer transplant patients, either pre or post-op, particularly around mental health. We have people who are dealing with a very unique set of circumstances, a very challenging set of circumstances. It was described as a rollercoaster of emotion, particularly when you get the call in the middle of the night to come down for your transplant only to then be turned around and say, no, it's not going to happen. Subsequently, in terms of the recovery, I think that, for me, was a real gap that, if we do nothing about in this bill, we will have failed. I was really touched by the fact that all the transplant patients we met have been giving back in some way. Whether that is just on spec meeting transplant patients who are waiting for an operation and talking about their experience in helping them along, there is an anxiety around medication as well. The fact that we are asking transplant patients to run down their supplies of anti-rejection medication right to the end before they get the prescription causes anxiety and also Brexit is a concern that might be one of the medicines that we may struggle to get. Should we crash out with no deal? David, would you like to ask the individual who came along today to give evidence? Education was key to one of the roles that it plays and how we engage with a younger generation, especially if the age for consent is going to be 16. Lack of support, especially for mental health issues, but it was highlighted that the organ that was donated was important. It was a gift and I think that that was really important in the evidence that we took this morning. I think that the significance of an organ as a gift is something that is fed back in different ways from all the groups. I think that one of my overall conclusions was the value of networks. The transplant games were mentioned in our discussions but also the family donor network as well. Those are important networks and I am glad that, in some ways, our evidence sessions have allowed some more network building to be done by some of those involved. I repeat the thanks from all of my colleagues to all of those who provided that evidence this morning. We move now to the first formal session of evidence on the bill. Thank you for your patience and welcome to the committee. Dr Sue Robertson, Deputy Chair of the British Medical Association Scotland, Rachel Cackett, the Policy Advisor at Royal College of Nursing Scotland and Mary Agnew, Assistant Director of Standards and Ethics with the General Medical Association Scotland. I guess that if we go straight into the, I suppose, the heart of the matter is whether deemed authorisation will achieve the objective that I think everyone has set for it, which is to increase donation or whether it might have some perverse negative effects instead. I wonder if I could ask that as a general opening question as to the fundamental principle of the bill and the fundamental tool within the bill for achieving change. Is it fit for purpose? I feel that I should mention to you before I start on behalf of the British Medical Association that I am in fact a doctor that looks after patients either waiting for transplants or who have received transplants just so that you know that that is my background. I'll be speaking on behalf of the British Medical Association today, not personally. We've long supported a move to a soft opt-out system as part of a package to deliver more transplants to patients that need them. We don't think it can be done as a standalone thing. We don't think it will improve the numbers of organs available for transplants to help our patients unless it's done as part of an investment in the information. It's a infrastructure that can support the delivery of that ethos to give us more organs available for donation, but yes, we are definitely and have been for a long time in support of this move. First thank you for the opportunity for the RCN to come and it was great to sit in and listen to the feedback from your session talking to patients and families this morning. As we said in our evidence, the RCN consulted our membership back at the start of the year on a position on consent for organ and tissue donation and overwhelmingly our membership came back and supported a move to an opt-out or supporting obviously our Welsh members, the existing legislation in Wales. That support came with a series of conditions attached to the support for an opt-out and we've detailed those in our response. I'm happy to come back and talk about any of those within the context of how they're reflected in the Scottish legislation that you're considering at the moment. The one thing I would say and you've been talking a lot from your feedback from your informal session this morning about education and I think the figures that really struck us among our membership was that of those who responded only 25% felt that they could speak with confidence about organ donation, 22% about tissue donation and only 10% felt that patients and their families had had much discussion on the topic in advance. Whilst we're clear that those who are getting into the details of authorisation should be specialists in organ donation and that's where the expertise to do that sits, the wider discussions that need to happen at other points with families to support families and individuals to make an informed choice is something that I do think we need to come back to in the support mechanism. So similarly, there are many other things around this legislation that need to be in place to make sure that the legislation supports an increase in successful donation. Thank you very much for the opportunity for the GMC to come and contribute to this discussion. We're extremely supportive of the underlying aim of the bill in terms of increasing donation rates. We haven't actually in our response taken a formal position on whether this is the best way to achieve it and really that's because our role as the medical regulator, we think these are rightly matters for discussion in the Parliament with the public rather than one on which we would take a position. So the sorts of points we've made are really to raise those areas where we think there could helpfully be more clarity about how the bill might be expected to work in practice to support health professionals to act ethically in partnership with patients and their families. I'd very much underline the theme that's been coming out already about the importance of education both in terms of public understanding but also in terms of the support available for health professionals in what can be very difficult circumstances and sensitive conversations. Thank you very much. I appreciate that. The committee has conducted a survey in order to try to engage what the impact of the bill might be and to get some public opinion. We found that deemed authorisation while clearly it creates a presumption in favour of transplant for those who don't opt out, it also found that the number who would opt out increased. Most of that was from those who would have had no particular opinion beforehand. Is there, can I ask, particularly the witnesses who've said it's a good thing and it's a policy position that you hold? Is there a danger of a backlash or of losing on the swings what you gain in the roundabouts by encouraging those who at the moment have no particular view to come to a view and to take a negative position? Internationally, there is no evidence that this is likely to reduce the rates and in fact tends to have a positive effect if in association with the other measures to support it. Wales is our closest country and they've had similar legislative change in the last couple of years and there's no evidence that the consent rates have gone down and in fact family consent rates have gone up. Probably to a great extent as a result of the public information and the education that families have had and the fact that this has become a conversation that they're much more likely to have when everybody is well in the cold light of day rather than in the most distressing day of their lives. We think that it's unlikely to reduce the rates and if anything it will enhance the rates. We also think that it's really important that individuals who do not wish their organs to be used for transplant have an opportunity to register that wish. I would agree with much of what Dr Robertson has just said. Talking to our colleagues in Wales, I think that the important thing has been that that conversation has been supported by some of the changes that have gone on there and that conversation is important to get to that point of informed choice. For both families, for patients and for those staff who are supporting discussions at the end of life, it's really important that that informed choice is there, whatever that choice is. I think that's where our experience to date as a college has been, that the conversation is what matters, which is why we keep coming back to the issue of education. Mary Agnew, if you wanted to add anything. I think that we really just agree with that sentiment about informed consent and early and wide discussion being really helpful. Okay, thank you very much. Keith Brown. Dr Robertson mentioned family consents. I suppose my concern is that if this bill goes through presumed consent, it will mean that the rights of the state will supersode, supersede those of individuals in cases where the individuals haven't expressed a preference. I'm also concerned that families' rights will supersede the rights of individuals in some circumstances as well. We heard some evidence today that the family members who are consulted, although there is a priority attached to different family members depending on their status, may disagree and they can put them in a difficult position. One example was one lady who mentioned that she had given consent but not for all organs and then regretted having not done so afterwards. I'm just interested where you believe the rights of the person whose organs they actually are come in relation to the rights either of the state, as expressed through this or families or indeed the medical profession. This is a very difficult issue and again we come back to having this conversation early and that's what one of the main thrusts of this is that if people have the conversation with their loved ones about what they would wish to happen to their organs in the event of their death, then their loved ones will know that that's their wish. There is obviously a situation there that sometimes family members disagree and that is very difficult and very distressing and it, as I've already said, can be the worst day of their lives. Families would not be being asked for consent, they would be being asked for information about their relatives' wishes and that's perhaps an easier conversation for a family to have than the one that they have at present. I think that to have the soft opt out part of this legislation means that if the healthcare professionals involved feel that this is just going to cause undue distress to this family, then I do think that we have a duty of care to them as well. As a doctor, I think that you have a duty of care to the family and if you feel that it's going to cause undue distress, then I think that there should be a situation whereby authorisation will not go ahead. As a doctor, your duty is at first and foremost to the patient and we welcome the principle throughout the world of doing what you can to establish that patient's wishes. Our principle in terms of family involvement would be about being considerate and sensitive and responsive to those close to the patient. It was interesting looking at the reasons for patient refusal and often that is because those wishes weren't known, so perhaps in the context of a wider system where everyone is being encouraged to state their reasons and has the choice both to opt in and opt out, perhaps some of those conversations do become a little easier. I would very much agree with Dr Robertson that in situations of extreme distress to the family, I don't think that you would want to put professionals in a position where it was felt that they had to somehow override a very distressed family. Obviously, our position is one of support for deemed consent but, as I said before, the college has taken a position that there are certain safeguards that need to be in place and I think that there are two that are really important within the context of the question that you've asked. The first is that we're very clear that trained health professionals need to discuss the express wishes of the person who's deceased with the family and if you look at the figures that I know you've been presented through the SPICE briefing and you look at the importance of having a highly trained specialist nurse involved in that, then you see what happens and the difference that that can make in terms of authorisation rates. And it is important to go back to your point which is that professionals who are doing this at a very difficult time for families are highly trained, sensitive to the conversations that they're having and have an ongoing relationship then with the family. But we're also very clear that no practitioner should be put in the place of having to force a donation and our understanding is in practice that's what happens in Wales and certainly our position is that if a family doesn't want a donation to go ahead it should not be forced. And I think that goes back to one of the issues within which we've raised within the Scottish bill as introduced, which is around the duty to inquire. So I think it is absolutely true that the practitioners who are involved at that time, the snods who are engaged in that work are having to do some very difficult conversations with people who are facing or just been bereaved. And it's really important that we're absolutely clear what we expect of our practitioners and it would certainly be helpful in the course of the passage of the bill to understand a little more why the duty to inquire is being placed on individual practitioners rather than on an organisational level because there will be potentially disagreements and whilst nods will be trained to deal with that and to manage that process and to help navigate through that, it's really important that in statutory terms, in legislative terms, we understand the duties that we're placing our individual practitioners under. I shouldn't say that we have nothing but praise for the people involved in this process today during the evidence session but we are faced with passing a law and the difficult questions have to be asked and I think that I'm getting the sense, I don't want to paraphrase and do it unfairly but the views of the donor really are not paramount in this. The views of the donor will be subordinated in the case of presumed consent where they have not expressed a preference to the state to allow it to go ahead. They will be subordinated to the views of the family and it can often be a bit of a chance as to which member of the family is consulted for various reasons. If they are distressed by even though the person is expressed in full control of their faculties that they want to do this, that can be overturned by a family and you've also expressed concern for the health professionals not being put in that position. You could argue that if you make it clear in the law that they're not put in that position because the views of the donor should be paramount. Just one last point, Dr Robertson said that the families don't give consent and that's exactly what's been described. It will not go ahead in the areas where the family feels so strongly it shouldn't go ahead. That is a definition of consent, I would have said. It's really about the views of the donor that I'm trying to get to because this will be if passed the law. I think just to clarify the wording of the question, I'm going to read it because I think it actually makes a difference. The trained health professionals must discuss the expressed wishes of the deceased person with the person's family where contactable before any donation proceeds and then we go on to say if a family does not want it to go ahead it should not be forced. I do think we come back to my understanding of what this legislation is trying to do which is to say that there needs to be a conversation about the wishes of the deceased person. I think that that is an important distinction between the wishes of the family if you like and the wishes of the deceased person being asked. I do think that that is an important break that our members felt was important to put in. I think that in a situation where you are dealing with people in grief it's important that that conversation is able to be had and can also be done sensitively by people who are properly trained to do it. The specialist nurses and organ donation demonstrated to us as a committee some time ago the process of asking questions and the length and complexity that that can carry with it. If a family have the discussion about the expressed wishes of the deceased or of the potential donor but then decline to answer questions, does that amount to a veto in the process or is that a realistic proposition? Does that happen? Is there evidence that families sometimes either for good reason or bad either because they cannot or because they choose not to answer the questions that are asked? I'm sitting here not as a practitioner who's doing this every day and I'm aware that you've got colleagues from NHS BT on at the next session so I would suggest that level of practical detail is something that I know I would prefer to leave to them to answer. Thank you, convener. I wanted to just develop this further around the rights of the family because, as Keith Brown was saying, I think that it was an important aspect of what could be lost within the new legislation. Around 100 donors are currently lost in Scotland due to families refusing to donate loved ones organs, including, in many cases, instances where someone has recorded their wishes in the organ donor register. I wanted to develop further should the legislation reflect the current convention, which effectively gives families a right of veto. I think again perhaps we look to Wales and the family consent rates are higher in Wales than they are in Scotland and I think that reflects perhaps the change in their legislation and the fact that the public know more now about organ donation than they ever have in the past. I think that one of the themes that came out from your early discussion today was that education is key and if people understand what this involves and understand the benefits and the needs of patients who could be a friend of theirs, a member of their family, could be them in the future. If they understand all of those things, they are much more likely to wish to be able to help these patients by offering a gift of life to them. I think that anybody that I have spoken to that I have told about organ donation and we have explained to them in simple terms, people generally say, oh, I understand now, that makes much more sense. I think that that is key to all of this. The education of the public is key, the education of the health professionals as to how things might change and how the process might change, but to the public the education, which is already being done to some extent. We have real life stories coming out. People are seeing much more the benefits of organ donation, but still we need to educate them more and we need to help them to have those conversations. I think that that will get over much of the perceived problem here. Rachel Cackett. That you need those trained professionals to be involved in those discussions and that our members are not put in a position of having to force something, but I come back to the message which is it about the expressed wishes of the deceased person, how that is reflected in legislation. I guess there are many ways that that could be done and our understanding is in the Welsh legislation that is in practice what happens. I agree with that. The public awareness such that people are talking to their families about their wishes such that this isn't all a decision taken in the heat of crisis. I think you would move to a position where a greater proportion of families are much more comfortable and much more understanding of what's going on. I think there is a significant shift with this legislation. I wouldn't see it as a power of veto. I think what we're talking about in terms of not forcing health professionals will probably in practice be quite a small number of situations. The risk in saying that it would have to go ahead in those situations is a possible consequent impact on trust in the medical and nursing profession. I think that that could be quite a damaging route and you would want to be able to retain that ability to take family views into account where they're very strongly held whilst seeing the patients expressed wishes as what you want to be following. A lot of the conversations we've had with people and because over a number of years Parliament has been looking at different bills people in some extent think the law has already changed. Do you have any concerns specifically around deemed authorisation, increasing family uncertainty with the new bill? I feel like we keep coming back to the same point but I do think that it comes down to the education package that goes around because if what you want is families to have an open conversation about what their expressed wish is, whether or not under this legislation they have chosen to opt in, opt out or do neither, as an active choice, you want the active choice to be discussed. I know one of the issues that we've raised in our evidence submission to you in writing is that we can see that there's money going into NHSBT around the specialist nursing community and others and that's really welcome and absolutely support that going ahead. This is the crucible, if you like, of where that decision making goes ahead. Our members told us that they thought there was a much wider need for education and I gave you some figures at the start about how many of our members who responded were comfortable with these issues. I do think that there is a bigger set of money that's required to go out and NHSBT may not be the right people to go out and do this, it may be a government issue to go out and work with the wider health community because you want the conversation to be supported early so that if you're in a school with a school nurse or in a GP surgery with a practice nurse that we're not expecting those members of staff to go into the sort of expertise and detail that you would want from your snod, but you do want to be able to at least answer some basic questions and do it in an informed way to make sure that the public can make the right choice, however they then choose to express that. One of the most interesting aspects of this has actually been when people have made their wishes known, but issues to do with eyes, especially, not being donated. I've been quite struck with this legislation that maybe isn't going to get around the questionnaire when families are completing that. It's something that I think is worth considering as well, but individual organs, when you're doing that questionnaire, public information around that. Again, from our group this morning, an individual said that looking back they would have donated eyes, but it's a very sensitive area and sensitive organs as well to your experience. Just come back to your point. That again is public information. We need to teach the public what benefit their eyes could have in the event of their death if they gave them for transplantation. We need to show how grateful my patients and all patients who receive organs as a transplant how incredibly grateful they are and how lovely they are. Life-changing those things can be, or life-saving those things can be. Many people would reflect on the initial reaction that can be, oh, I don't want to give my eyes, and reflect on whether they really mean that or whether now that they've heard what would happen in that situation that they may change their minds. Again, we're back to public information and public education. I wonder if I can ask Mary Agnew. The way that the bill is drafted at the moment, would there be any risk of legal or regulatory consequences for medical professionals who decided for the reasons that we've discussed this morning not to proceed because the family didn't wish to do so even though there was an express wish by the person in question to donate? I think in terms of regulatory consequences, the way we approach this is whether doctors are acting in good faith on the basis of the guidance available in partnership with patients and we're appropriate those close to them, and we do in our fitness to practice considerations. If something comes into us, we have a duty to look at it and see whether we need to investigate, but we take into account context. We expect the doctors to be able to justify their actions. I suppose that the short answer would be saying, no, not on the face of it, I don't see a problem, but where we have raised some questions in terms of what we and other organisations might need to do to support doctors to understand and apply this new law is getting a little more clarity about what is envisaged in terms of the duty to inquire in so far as it applies to the wider healthcare team as opposed to specialist nurses involved. Recognising that we would want to see some sort of, ideally, separation between the decisions that a doctor is making about that patient's treatment and the set of decisions around possible organ and tissue donation, really sensitive conversations that need careful and trained handling. What sorts of circumstances might the duty to inquire apply to a doctor and what sort of training and support would be made available to them to handle those conversations? I think that those are some of the areas that we'd be keen to see explored as the bill progresses. Brian Whittle As I mentioned, this is going to be a law. Keith Brown said, if we were to create law, clarity is paramount here. One of the things that strikes me is that sitting alongside deemed authorisation will also be opt in. Given that there's a different connotation to opting in as opposed to not opting out, I wonder if you think that that may increase family uncertainty and that potential to increase refusal rates. Rachel Cackett I think that we've raised a number of times that there isn't always clarity in the bill or the documents that accompany the bill to make it very easy to understand exactly what is being proposed in all situations. I think that whatever system is chosen if this legislation were to go ahead, the most important point is that if we want people to make informed choice however that choice is made, we have to be 100 per cent clear what sort of choice they're making and about what. That will then make practitioners' lives a great deal simpler and families' lives a great deal simpler when they're trying to have these conversations at a point of real grief. If it's not clear then I think that we do everyone a disservice so we wouldn't have a position on exactly how that is framed in the legislation but the important point is whatever choice is made it has to be absolutely clear to us all what is being chosen. Sue Robertson I think that the BMA position reflects that of the RCN which is that clarity is key along with communication. Clarity on what the change in legislation would mean to the public is key. The fact that if you opted out then your wishes would be registered. I think a point on the bill as written at the moment would be that at present you require a written confirmation of an opt out and we feel that that makes it harder to opt out and it's slightly contrary to making it easy. If you do not wish to give your organs to opt out just as easy as it is to opt in and we think perhaps that might be a situation you may not require written confirmation of opt out much as we don't at present. I can understand the concern about having opt out opt in and deemed consent at the same time and I think that has to be really carefully managed but I think that certainly in Wales what they did was they left opt in as an option because some people really wanted to do that. If people want to opt in actively I don't think that we should stop them doing that. As long as they know that if they don't opt in we presume unless they've opt out that they wish their organs to be donated then having the ability to opt in if they wish to do so is fine. We know that at the moment about 50 per cent of the Scottish population have opted in but actually if you ask people nine and ten would say they wish their organs to be donated so we're looking for that 40 per cent there that haven't at present opted in but that actually do want their organs to be donated and those are the people that we want to have that conversation with their families because we know they actually really want their organs to be donated. I can understand the concern but I think that we would leave the opt in option too. I'm not sure whether that was clear. I think that the connotation of making the positive step to opt in is different from not opting out. I think that that's the issue and I'm looking at it from the family perspective here in that horrible situation of having that conversation around one of the hardest times. From their perspective if you can say to them that your loved one had opted in and consented to these organs being donated is an easier start to a conversation than they have opted in. I think that what I'm getting to here really is that should we be in a situation where we're looking to better address a situation where we can create an environment where everybody has that option to opt in or opt out, should that be where we're heading? I'll take you back to at present everybody has the ability to opt in positively and it's very easy for them to do so but people have busy lives and they just don't get round to it and people think it's never going to happen to me and there are four out of ten people in Scotland who would wish their organs to be donated if you asked them but haven't opted in. Their families may well at present know that they wish to do that but they just haven't got round to officially registering that. I think that it's clear that some people wish to opt in. If you change legislation and you make it clear to them that they can opt in if they want, they can opt out if they want. If they do neither, then it is presumed that they wish their organs to be donated. I think that's better than the system that we have now. I'm one of the 40 per cent. This conversation that we've had here has prompted me to make that decision. What I'm asking, I suppose, is perhaps around—there are several things in life that everybody goes through getting your national insurance number when you turn 16 or perhaps when you go for your driving licence or whatever—all these things have the potential to put in front that option for everybody. My question is—I think that we have to get this absolutely right and it comes back to clarity. My question to you then is if we can create that environment where everybody has the option to make that decision, would that not be a more positive situation than just presumed consent? I think that you've just made the argument for presumed consent by saying that I'm one of those 40 per cent. The problem is that many of us, as we age, don't get sent a new driving licence and we don't register with a new GP if we happen to live in the same area and perhaps we don't use the library anymore because we buy our books online. So, actually, it doesn't pop up in front of us and so we never get round to it. Very quickly, very quickly. The outcome that we want here is—I think that we're all agreed that we want more direction. My point is, actually, it's never been put in front of me. I'm asking should we be creating an environment where it's put in front of everyone as part of this legislation? I guess that we come back to the point that legislation is part of a whole panoply of actions that need to be taken to increase donation rates. So, yes, when I receive something in the post, something that hits me in the face and asks me the question and makes sure that I'm having that discussion so that my loved ones are informed about my wishes is important as much as it is for you. But also, our members were clear when we asked them detailed questions around and opt out that 71 per cent of our members supported that as one tool to increase donation rates. The thing is, I don't think that it's the only tool that should be on the table. I'm a former liver transplant nurse and I have been involved in retrieval as well as kidney and pancreas transplants as well. I'm interested in—simply put—deemed authorisation allows a conversation to begin exactly as Brian's described. As we're pursuing that, I'm interested in the BMA's information about barriers to donation might be that people are not really familiar or maybe a bit scared of if I choose to donate my solid organs, that's great, but then we're now moving into processes where there's new procedures that are taking place, like face transplants, which can freak people out when you start talking about that. Or even hand transplants. In the submission from the BMA, it talks about the ability to exclude certain parts. I'm interested to know if you think that that is a supportive—it's a good way to proceed so that we can be explicit about which tissues organs that are potentially available. It's a difficult one because time moves on and medical advances are very rapid and so things change. Again, this would be one for public information. The key here is to try and increase the number of organs available for patients. We do not want there to be a situation where somebody is not clear. I think that the conversation again needs to be had in the public about what we're actually talking about here. Are we talking about presumed consent to use any part of your body for transplantation? Or are we talking about the common organs that we use for donation? Do we leave space for people to exclude certain parts of their body? If it means that people are better educated and have more ability to have their wishes respected when they die, then I think that there should be places whereby people can exclude organs. I think that's our view. Rachel Cackett. I mean very similarly one of the lines that the college has put against its support for an opt-out is that the scheme has to be very clear of what's included and what's not so that we come back to that point of clarity. The other thing that we have said is that the opt-out should be limited to donations for transplantation and that everything else should require express authorisation. There are those limitations and I think from what our members have said to us that is a helpful way to proceed if what we're looking to is to try and increase rates. I'll ask my other supplementary. It's about the duty to inquire as well. The bill sets out that if a reasonable person who would be convinced by the information that the potential donors' latest view that they were unwilling to donate, then donation would cannot go ahead. I'll be interested to know if you think there needs to be more detail on the standard of evidence required in order to override donation. Rachel Cackett. It's an issue that we raised in our evidence, which is the duty to inquire, which falls on individual health professionals. It's very often nurses who are in the situation of negotiating that process with families. We think that there is definitely a question to be asked, which is, is that rightly placed on individuals? That's question one. Question two is if that is the way the bill is to proceed, then we have to be very, very clear with our members what does that actually mean for them in terms of their practice. The last thing we want is a bill that supports defensive practice because individual practitioners are concerned about the implications of what a statutory duty to inquire might result in. I think that there are two questions to be answered there. We certainly don't have the answers to those, but they feel important questions as the bill goes forward. Practitioners need to know that they are operating with great sensitivity with the support of clarity of what we're asking them to do in these situations. Just what she says, we think that the views of the individual are paramount about what happens to their organs. If somebody has changed their mind and there is evidence of that, then that seems right not to proceed with donation, but clarity around about what evidence is required is very important. It's very important for the public to know, but it's also very important for the healthcare professionals involved at that time. Does it need to be in primary legislation? I don't know if Mary Agnews has a view from a regulatory point of view. No strong way about the best way to achieve it in legislative terms. My hunch is that it probably doesn't need to be on the face of the bill, but it does come back to what goes with the bill further down the line in terms of support. I think that we come back to the point, which is that what is on primary legislation is an individual duty to inquire, and that is where we first need the investigation to be, is that the most appropriate way of dealing with what I think is a reasonable request, which is to say the conversation, which is our position, needs to happen with the family in case that the individual has changed their mind since they last formally perhaps opted in on to the register. There needs to be that discussion. How that is done needs to be done in a way that, if there is a statutory duty, there is equally something that makes absolutely clear what that statutory expectation is. No whether that's done through regulation or guidance or whatever, but it needs to be, we need a failsafe system for our practitioners to be able to operate and for the intent of the bill to then be realised. Sandra White Thank you very much, convener, and welcome as well. I think that one thing I've learned certainly from this bill anyway, if I spoke to anyone, my family or anyone outside about organ donation, they understand about opt-in, opt-out, but they don't understand anything else. I'm from the private talks we've had with various witnesses as well. It's much more complicated than that, and it's very, very emotional as well. One of the areas that really presented to me, and I didn't know anything about it, was the pre-death procedures and just how that affects families within a 36-hour period. We spoke about clarity and education, and this bill looks about clarifying certain procedures when you're not clinically dead and that is going to be in legislation if deemed consent is there. Having spoken to witnesses not just today, but in previous weeks as well, there has been some concerns around PDS. In particular, is it a conflict of interest with doctors? That's one of the issues that was raised with us. Does it pose a danger or a significant change to the bill if PDS is authorised there? If it's carried out under deemed authorisation, should you always have expressed consent? That's three questions all in one, but it certainly surprised me just how involved people have to be in regards to deemed consent. As I said earlier, I honestly didn't realise that families could witness the actual procedures if they wished to, and that the bodies were still worn in certain cases. It was a real surprise to me, so I just wondered what your thoughts are on the three questions that I posed. You want me to pose them again. Who would like to start this again? It's a sensitive area, but an important one within the bill. Sue Robertson. It is a medical professional or nursing professional's paramount responsibility as the care of the patient in front of them at that time. Anything that would potentially put that patient at risk or at harm would be something that we would not support. However, if you are in that situation and you have a patient who wishes to have their organs used for donation, then if they wish that to happen, then the pre-death procedures are part of that organ donation happening. We go back to public information and teaching people what it involves so that there is nothing hidden, so that it is clear to people what they are putting their bodies through in order that their organs could be used in the event of their death when they don't need them anymore. If you educate the public about what those things are and why they are done and we ensure that everything that is done is for the good of the patient in front of us, that includes continuing to respect their wishes after their death. I agree with Dr Robertson that we are currently consulting on revised guidance on consent. Our general principle is that it is vital that patients have good, accurate information about the types of procedures that they may undergo. We would see greater public awareness of these sorts of procedures being part of what is needed in terms of public information and awareness campaign. Of course, there is a range here. There are some things that are minimally invasive, not particularly harmful, that are probably less controversial, but I think that it is an area where there is a limited public understanding of what might be involved and bringing that into the conversation would be important. Thank you very much. I certainly didn't know anything about the pre-debt, and I don't think that anyone does either. I don't know the reason for that, but when you are saying about clarity and education, when people put forward and they opt in, should that be in writing that they are informed about what may happen? Obviously, some organs can't survive after 24 hours, 36 hours, so it's important that they are removed as quickly as possible. Do you think that people should be informed in writing with that, or is it just that once it happens that people are told that this is a procedure to go through, or should you be told that, as a donor, this is part and parcel of what will happen? I would have thought that, as part of any legislative change, that public information is important and that people should have access to written information if they wish to read it, but that that should be access to the public at any point in their lives, rather than just at the point of donation. I think that, again, what we would hope, what the BMA supports, is a move to a situation whereby organ donation is the norm. That's a long-term ambition, but public information and information about the processes around organ donation are all part of that. I'm sorry, it was about a legal issue. It was for Mary Aging, you mentioned about duty to inquire, and some issues, particularly for the law society, had picked up in the aspects of pre-death procedures. I just wondered if that would have any legal aspects for yourselves or the organisation in regards to people's assumptions or whatever it may be. I mean, I think it comes down to that sort of clarity point. I mean, one of the questions we had at an earlier stage in the consultation was how it fits with the Adults Within Capacity Scotland Act and the particular situations taken into account where people may lack capacity. So, again, it's one—I mean, I'm not sure what the legal ramifications would be at the moment, but it's an area we'd be keen to give as much clarity to practitioners as possible to make sure that they feel confident in acting ethically and within the law. Just a quick clarification. Pre-death procedures are procedures such as intravenous lines that might be put in or medication that would improve organ perfusion. It's procedures that might be performed already, so given certain IV medication. But once a decision is made to donate, that's when procedures that are carried out might be simple things like change of medication, increasing doses. So can you clarify what pre-death procedures are? Because I think it's not about doing stuff to people, it's about helping support once decisions to donate are made. Is that correct? That is certainly how we would say it, and that, again, is part of that education, that if you wish your organs to be used in the event of your death for transplantation, that part of that wish is to try and ensure that those transplants would be as much benefit as they could be to somebody else. I think that being very clear about what procedures at that time will change over the years as medicine changes, but it needs to be very clear that the public knows what that involves. I think that it presently perhaps doesn't. Thank you very much, convener. Good morning to the panel. Thank you for coming to see us today. We, as a committee, had informal evidence session this morning with recipients of organ donations. It was a very inspiring session. One of the things that came out of this was a discussion about the need for those conversations that have to happen if we're to generate an uptick in the number of people who are on our organ donor lists. One of the suggestions that came from a gentleman who is an organ donor recipient was that, with the organ register, you could have a counter-signatory box so that your native kin was aware and had almost co-consented with this to you. That might not be practical, and I understand that. But would there be something that we can do around the guidance of this bill to generate those conversations if, with the donor list that is being retained, a notification process was adopted or something like that? Would that help to engender those conversations so that when people said, oh, he was an organ donor, there's not a surprise to that next of kin? Can I ask a clarification when you say notification process? So you can tick a box if you're registered, because we're going to keep the organ donor register. If you're a new subscriber to that, then perhaps there's a field that you can choose to check which would send an email to your next of kin just to say, so they are so notified that you have just signed up to that. Even if you don't get round to talking about it, it's just an automatic thing that happens as part of that process. Rachael Cackett. I mean, I think we need to think through how you have that conversation, and I think it's important that those conversations between those who are listed in the bill as the people who may end up making, or not making the decision, but having the discussion with the people around your express intent are understanding what that express intent is. And I think conversation is important. I can only speak personally. I think I would find it quite hard to receive an email telling me someone I loved was about it, but I understand the point. And I think we need to look as the support around if this legislation were to go forward, all of the options that are out there to support those conversations to happen. And I think it's a really interesting thought about how do you use the resources that we have, which would include potentially keeping the opt-in, which is the proposal at the moment. How do you use that to encourage a conversation so that none of this, you know, you're going to be dealing with a big enough shock at the point when you're having to have this conversation, the fewer of those there are, the better. So I think anything that we can discuss that may go around the bill to support that is a really good thing. I think it is incumbent on this committee not just to tease out their clauses and sections of this bill as they stand, but look at how we can improve the landscape for triggering those conversations. Sorry, did you want to come in, Dr Robertson? I wonder whether, instead of that where I'm concerned about the lack of conversation there, perhaps the email should come to the person who registers to say, remember to talk to your family, remember to discuss it with them. And I think that that would be a much more positive thing than just an email that tells you. I think that that point is well made and taken in the spirit that it's offered. The second area I'd like to ask about was the lived experience that we've had of the recipients that we met this morning. And I think that this goes for families of donor patients as well, because they talked particularly to those who are on transplant waiting lists of huge pressure on their mental health just in terms of the rollercoaster that they described, in terms of the late night phone calls being driven to hospital only to be turned around and said, well, this isn't actually the match we thought it was, or the organs aren't viable. And that creating huge pressure and strain on relationships and them not having any real specialist mental health care or counselling. And is that a gap in our society? Do we need to have provision specialist teams, which are dedicated to helping those firstly on transplant lists, but to support them after the fact and to support the families of donor patients in the round? Can I speak as a professional rather than on behalf of the BMA here? Having done a clinic on Monday when all my patients were transplants recipients and then gone and looked after the patients on dialysis waiting for our kidney in the afternoon. I think that there's a huge amount of pressure and that emotional rollercoaster that you describe of getting the phone call, you know, if you're in Dumfries-Hurston-Rar driving or being driven all the way to the transplant unit and then waiting to find out whether this is the one that's going to be yours is huge. And I think the pressure of having a failing organ, whether it's your kidneys or your lungs or your heart or your liver is huge on your mental health. And at present, in Scotland, I think that we have too little resource applied to this group of patients before, during and after transplant or indeed for the patients for whom transplant is not an option. And so any increased investment and support that we can have for patients in those groups would be very, very grateful accepted and is very needed. So we've had many conversations around tables like this about the pressures on mental health services in Scotland and we know that there are significant gaps and whilst announcements have come forward to try and address some of those. We're really catching up and clearly, as you've said from your experience, this is a patient group that has very particular needs. The statement that the RCM put out and its position on deemed consent was very clear that its first condition that we wanted to attach to that support was that sufficient resources are made available to define and support the additional infrastructure and capacity required to increase the rate of successful donation. And I think we chose that wording very, very carefully. This wasn't just about increasing the rate of donation. It was increasing the rate of successful donation. And that requires us to also then look at that recipient population and the wellbeing of people who are receiving donations to be able to go on and have a success of that. And we would be wrong if we were thinking of parity of esteem, not to consider both their physical and mental health and wellbeing in that consideration. David Stewart. I thank the panel for coming along and for their evidence to date. Could the panel outline, in their view, the best practice that's provided in Spain towards organ donation, which is very much set up as one of the most successful countries in Europe? Who's an expert on Spanish transplantation? Well, actually, it's just to say that I'm aware I had a long conversation with a colleague who you're going to be speaking to shortly who knows a great deal more about the detail of Spain and how that compares to what's being proposed in Scotland than I do. So rather than giving you an ill-informed response, I would defer to their contribution. Thank you very much. Perhaps I could help out and provide a few bits of information. It's always difficult, of course, to compare countries with different cultures and different systems. But in very simple terms, Spice will provide some information to us today that the UK donation rate is half that of Spain, even if you adjust for the family refusal rates. One of the arguments that Spain has put forward is that they have a very strong system of transplant co-ordinators, donor detection programmes and great provision of intensive care beds. I mean, while still, of course, I understand that the bill is focusing quite strongly on consent and different systems of consent, which I'll put to one side. Are we maybe missing a trick here? Is there other wider things perhaps we should be introducing into the bill as a committee that would focus in some of these areas, which obviously Spain has shown is to be extremely successful? I think that we are very clear that the little I do know about Spain involves the fact that the infrastructure set up in Spain supports as much transplantation as they can, and I think that there is no point in changing legislation if your infrastructure cannot support the increase in organ donation. So far, the Scottish Government and the transplant networks have done a huge amount to improve the rates of transplantation in Scotland, and when you meet the transplant surgeons at the moment, you meet a bunch of very tired people. They are working really hard, and I think that not to invest in that infrastructure, not to make it there so that it can deliver the aim of this legislation, would be very much a missed trick. I think that it may not be the job of this committee in this situation. I don't know how politics works, really. It is very important that you have the infrastructure to deliver this, and that includes ITU beds. It includes enough specialist nurses who are highly trained to have these very sensitive conversations and to make this work as easily as it can for families of potential donors and for recipients and their families. Also, to have enough transplant surgeons so that the transplant can go ahead as speedily as possible safely and well for everyone involved. There is no point in changing legislation if you do not have the system. The system of intensive care beds in Spain is crucially important to make sure that it is a successful donation. It is absolutely vital, isn't it? It may be that it is not for this legislation. It may be a wider issue for the Scottish Government to take this forward in terms of building up capacity in the Scottish Health Service. Am I correct in assuming that there is some best practice in Spain that you think could be successfully applied to Scotland? I think that I would expect that our transplant networks, our transplant surgeons and our specialist nurses and their networks would be able to advise as to what they think we need in Scotland in order to deliver an increase in transplant rates. I would acquiesce to their better knowledge in the situation. We have a highly trained, highly motivated group of people who are very knowledgeable and I would ask them. David Torrance. In a way, dim consent applies to people aged 18 and over. In Scotland, dim offerisation applies to individuals who are 16 and over. Do witnesses agree with the age of 16 by age for dim offerisation that would apply in Scotland? Mr Robinson. The BME is very supportive of 16 as they age to be used at this point. We also think that from the age of 12 there are some young people who are well enough informed to make decisions but we feel that 16 is the age by which we would consider the right age for this bill. The position of the RCN is that they should be limited to adults and that consent for those who are not adults should remain as is. I guess we come back to a pretty persistent question, which is 16 or 18 in Scotland. This is not the first piece of legislation where we have had that debate. From our perspective as the college, we are not going to take a position on what constitutes an adult in law for this legislation. However, we are very clear that this is for adults. However, that is defined within any of the four countries of the UK. I really argue that you will have responsibility for regulating all four countries of the United Kingdom. How does the 16 issue look from your point of view? I mean, we haven't taken a formal position on 16. I mean, I would say it broadly fits with our wider guidance on 0 to 18-year-olds and the wider position under the Mental Capacity Act, for example. I mean, I think it would be interesting to see the full debate on that. We will obviously work with whatever this committee decides, but certainly in terms of maturity of young people to think about these issues and consent to them. Particularly in the context of a widespread public awareness campaign, a personal view would be that there is a case for 16. Excellent. David, have you followed up? The reason I am asking that question is from the witnesses in the panel last week. Some have seen that it could be a difficulty with a transplant of an organ if it was not suitable in Scotland and if it was to go to a country where 18 was deemed as the age of consent. Do you have any thoughts on that at all? I agree. Is there a cross-border issue? I think that there could be, and NHS Blood and Transplant will probably be a better place to talk you through some of those questions. Thank you very much. I thank the witnesses for a very informative and stimulating session. We will suspend briefly to allow for a change of witnesses, but thank you very much. We now move to our second formal panel session of the morning with expert witnesses on the human tissue authorisation bill. I am delighted to welcome to the committee Dr Stephen Cole, consultant in intensive care medicine at Ninewells, representing the Scottish intensive care society. Leslie Logan, whom we welcome again, is the regional manager for organ donation Scotland with NHS Blood and Transplant. Professor Mark Turner, medical director and designated individual antitions and cells with the Scottish National Blood Transfusion Service. Welcome to you all. I know that you will have followed some of the previous evidence that we have received. I would like to start again with a general question on the fundamental objective or principle of the bill around deemed authorisation in place of the current system. I ask your views on whether that will, indeed, potentially achieve the objective of increasing the number of successful donations. Who would like to start? Leslie Logan? I agree with previous speakers that I do not think that a change in legislation by itself will make a difference. I think that by starting a national conversation about organ donation and by addressing educational concerns earlier, we will affect a culture change, which in time, just as hope is the welter beginning to feel, will make a difference. The halo effect of introducing a change in legislation will make a difference. There are one category of patient families who we speak to, and those are those where they are uncertain of their loved ones' wishes, and therefore they err on the side of caution and say no to donation. The deemed element or the deemed part of any legislation change may help there. Thank you very much. Stephen Cole. There is a mixed range of views within the community of intensive care around Scotland on this legislation. I think that, as Leslie said, there are some potential benefits from it. I think that one of the things that we, as a group, are concerned about is the power of the wish, the gift, with the new legislation that may be lost. We are also very concerned that these are a group of patients who we have heard about earlier in the session, whose families are going through the worst days of their lives. They are coming to terms with the fact that somebody they care about is dying, that everything in intensive care that we have tried to do to keep them alive has failed, and that death is the next step. That is not a normal set of circumstances for those families. I think that we have concerns that anything that deems what may happen to them after death may end up coming between us and these families in terms of the level of trust that we currently have. Mark Turner. We agree with Leslie and the previous speakers. I think that the key issue here is the public engagements that we engage in both at a Scottish governmental level and as individual organisations with the public, but also the support that we give to clinical colleagues in having these very difficult conversations. I think that those are the key elements in building on deemed authorisation to a successful increase in organ and tissue donation rates. Clearly, as I mentioned to the previous panel, one of the consequences of heightened awareness in greater debate is that the number of people choosing to opt out may also increase. Do any of the panel have any concerns about that, or is that more than offset by the increase in awareness of those who may wish to support organ donation? I don't think that we have any concerns about that, but we do know that people change their minds. Equally, somebody who has opted in may change their mind, and equally, somebody who has opted out may then change their mind. In future, you could have the scenario where someone has opted out, but then a loved one has received the gift of a kidney transplant, but they don't then get round to opting back in. From my services perspective, we would plan to approach all families where organ donation is possible to ascertain whether any change of expressed wish has happened. Stephen Corr. I think it's really important for the committee to realise that we've come such a long way in the last ten years in terms of organ donation. I speak to families on a weekly basis around the end of life conversation, and it was not uncommon in the past for people to have no idea about organ donation and what may or may not happen. It's very rare indeed now to come to speak to a family who aren't aware of it, who don't have a view. I think that your point is well made that people are now more crystallised in their views, and certainly public awareness is far greater than it was a decade ago. That's a very interesting observation, and that relates to the 2006 act, so the question is whether a further change in the law of itself will further increase that awareness. I'm sorry to return to a previous topic, but I was interested in the discussion that we just had. I'm not sure if all three of you were able to listen to all of that. Miles Briggs had asked the question, pretty straightforwardly, about what is in effect the practical reality just now that there are family vetoes if you want to put it that way, or family consent is required and where it's expressed that it would not be overridden. Miles's question was, should that then be in the bill? One thing that everyone seems to agree on is the need for clarity. I had the impression from the last three panellists that they didn't really want to answer that or didn't answer that, maybe because they want to see the current practice rolled forward, but I'd just be interested in your views. I think that we're really helpful to the committee to know the extent to which clarity should cover this point, and not least because the individual, the donor having expressed a wish, surely must have some expectation that that wish will be observed subsequent to their death. So, just be interested in your view as to whether we should write in if there should still be this family veto and whether it should be written to the bill. I would like to start. Stephen Cole. I think it's a really well made point. So, what happens at the moment is that we would approach a family and communicate with the family, and first and foremost we would make sure that the family understood that there was nothing more that we could do for their relative in intensive care. And only when they've understood and accepted that point would we then move on to any end of life conversations. We do that collaboratively. Myself as an intensive care consultant and the specialist nurse for organ donation. And we listen to family's views. Having dealt with this on a daily, weekly basis, I would find it difficult in my profession to override the wishes of expressed by the relative. So, if a patient's family said, yes, he signed up to the organ donor register, it was an expression of a wish at a point in time. I now have more information which says this is actually not what he or she wanted. Then as the intensive care consultant speaking to that family, I would listen to that. I don't think that we can push families into a situation where donation is forced through against their wishes. I would find that a very difficult situation to be in. In context, this only happens in Scotland around six times a year. There are only six occasions in a year where a family override someone's decision. Of those six occasions, probably around half of them, you could argue are not in fact overrides, because what happens is someone signs on the organ donor register and then tells their family, I've signed on the organ donor register, but if that time comes, I want you to make the final decision. So, the reality is, three times a year in Scotland we have a family who maybe have discords, there may be a mother and a father who can't make a decision about a child. To be fair, we're trained to manage that situation. We will have a conversation with the family about perhaps a limited donation of kidneys and liver abdominal organs, because people, as we know, are very emotionally attached to the heart, for example, in a child. So, we are trained to deal with those conversations and operationally, overrides aren't a huge issue to us. I think that they can be managed well by asking a series of questions, even what conversation did you have, when did they have the conversation, what did they say. And I guess the final point to me, because if somebody has a registered or has an expressed wish, we're not approaching the family for their permission, so I'm paraphrasing also, but we would say Johnny was on the organ donor register, therefore he indicated his support for organ donation, so let's work together to make that happen for him. Equally in the future, Johnny didn't opt out of organ donation, indicating a support for it, let's work together to see if we can make that happen for him, or wording a lot along, I'm under pressure a little bit. We can have those conversations, but overrides really don't happen as frequently, I think, in Scotland, as perhaps they happen elsewhere in the UK. That's because we do have 51, 52 per cent on the organ donor register and very high public awareness. We're finding, certainly now, that families are raising the subject of organ donation with our intensive care colleagues. This is clearly a very difficult issue. In my view, from an ethical perspective, clearly one should give primacy to the views of the donor himself or herself. Having said that in reality, particularly for tissue donors, we need to ask the same kind of broad range of donor selection questions as we would apply to a blood donation, for example, so they're very extensive. To protect the quality and the safety of the tissue that's going to be transplanted into a recipient. Of course, the similar difference is that, for tissue donation, the donor is no longer with us, so the reality is that those questions have to be asked of the family. I would suggest that, in reality, the family could, in fact, have a de facto veto by simply refusing to answer the donor selection questions, in which case we couldn't proceed with the donation in any case. I didn't quite get from... I'm assuming the answer from all three of you then is no, it shouldn't be written into the face of the bill. We've never had a family ever not want to answer the questions around lifestyle, healthcare choices. That's very interesting. It's never happened. Mark Turner, you say it might happen if a family was reluctant to go ahead. A moment, families, of course, can decline to give their authorisation so that they can do that directly. In a scenario, for example, where the donor appeared to express their wish to donate, but the family are very opposed if there is a legal requirement to say that the clinicians can override the family wishes, I'm only pointing out that, actually, by simply not answering the questions that we ask them, the donation cannot proceed in any case for patient safety reasons. So the general view is it shouldn't be a legal requirement and your additional point is that even if it was, it wouldn't necessarily be effective. I don't think you could write into law a requirement for relatives to answer questions. I just wanted to maybe develop that a bit further, firstly, to put on record from the group that we had this morning, just how grateful they were to the teams who had worked with them and their understanding, and it was good to hear the positive experience that they'd all had. And then beyond donation, two of the individuals that I saw had their medal with them the first time they'd actually worn it, and so these sorts of aspects were important and I think hopefully can be developed. To go back to the point of families in terms of, I think, more the confused message that this legislation might send out at a time when families are tired at a point in their lives when their world is collapsing around them, that could actually deemed authorisation increase family uncertainty and then refusal rates stay the same. The information that we were given suggested that around 100 donors are lost in Scotland every year due to families refusing to donate their loved ones organs. This year so far we've approached 158 families, and by the end of the year it will be close on 200. Consent rates or authorisation rates this year are up, but you're correct that there are a high number of families that still say no, and we're ever striving to provide information to make that process as simple and streamlined for them. I think it might be helpful for the committee to know the totality of intensive care. Last year, 2017, approximately 10,000 critically ill patients were admitted to intensive care units around Scotland. These are overwhelmingly patients who would not survive unless they were admitted. They required ventilation, ionotropes to support the heart, et cetera. Approximately 1,400 of those, so 14, 15% died in intensive care, so that represents the totality of the potential pool of donors. As Leslie just said, we approached just over 150 of those patients. The reason for that is that many patients die in intensive care in an uncontrolled way. Despite our best efforts to try to keep them alive, they just continue to deteriorate and die. For organ donation to be a consideration, there needs to be an element of control in terms of the process. I'm going to go back to the situation that I was exploring earlier on. The reason I'm doing that is because creating this bill and legislation has been said before. My clarity is absolute parament and simplicity in the bill in what is an extraordinarily complicated environment is what will make this bill successful. I keep coming back to this tension between making a decision, a positive decision, I will be on the register or I won't be on the register is delivering a decision. The deemed authorisation may not be a decision having been made. When we have this conversation, I always try to put myself, inevitably you put yourself in that situation. Do you not think that that creates almost a two-tier system in terms of potential organ donation there and puts the family in a dilemma? So, when you opt in your wishes are known, it's very easy as a healthcare professional to start that conversation with a family. Like I've said, Johnny was on the organ donor register, he's expressed a decision to donate his organs. I'd really like for us to work together to make that happen. We'll give you information etc. Where they have opted out equally, we need to have a conversation to ensure that they haven't changed their mind. So that would be something like in 10 years time, in 2017 Johnny opted out of the organ donor register, but we want to have a conversation to make sure that that remained his decision. And that way, if he had changed that decision, that would be helpful. In the situation I think where we have unknown wishes and where deemed would come into play, I think a lot of families err on the side of caution in those situations and therefore the default position is to say no to donation. Whereby, unless you opt out, it will be assumed that you're supportive of donation and I think that how we get that clarity of message across to the public absolutely is key. I know the French have run some very simply worded campaigns, I can get pictures of them and provide them, which have helped the French get that message across to the public. I don't think as a healthcare professional involved in approaching families it complicates for us. I think having people who are registered actually makes the conversation easier and in a way having people who might be deemed also allows us to be a little bit more culturally presumptive because they haven't made that decision to opt out. So Johnny hasn't opted out of the organ donor register and therefore has indicated his support. Now the family may well object at that point, but it allows us to start the conversation with something tangible and as you know from our previous conversations we will always check the organ donor register prior to going in to speak to a family and if necessary we provide them with a copy of that organ donation register entry so that we can see it for themselves. Again, looking at it from my perspective, I was in that horrible situation and having heard most of what we talked about certainly before I got involved in this particular investigation, organ donation is liver, heart, kidneys. Now we're struggling a wee bit, but we're going for it, yes, we've got lungs, but we're going on with just talk teller and tissue, face, hands. Now, to my mind, I would like to suggest that it would be much better if that conversation had been had with the donor or the donor had that ability to tick the boxes that they need to tick because that is a conversation that how could you know, obviously, but that's trying to have passing that conversation on to the relatives. I think that my question really is, should we not be really looking at ways in which, because I'm one of the forties, I said earlier on, disgraceful, but if you put the form in front of me I tick the box, should we not be looking at ways in which we allow that positive decision to be made easier for everybody? Looking at those instigations where we can increase the number of people who say yes or who make the decision to say no? Should that not be put into legislation? For some of the much more rare types of transplant, facial, composite tissue, limbs, for example, we would have to approach the family separately for those anyway because it comes down to things like skin matching and there's a whole raft of other assessments that we need to make in those situations. I think the organs that are, for one of a better word, commonly transplanted, the ones that people sign on the organ donor register for are the ones that people absolutely recognise, and therefore those are the ones that it should be possible to be deemed for and that the other much more rare, you know, we have a uterine transplantation programme in London at the moment, and internationally also you will hear in the press of other types. Of quite unusual transplants particularly for those individuals who have been at war and things. So I really don't have a problem, and I do think that the public generally, when we spend up to three hours with a family, you know, as you know, and therefore some of that explanation really can only come with the understanding of talking with a healthcare professional that really knows what's likely to happen and what's likely to be considered in an individual situation. We don't want to burden families with a whole pile of information only to discover they can't deny X, Y, Z, A, B and C anyway. We try to tailor our conversations with them so that they absolutely know what we are thinking at an early stage. I know future proofing is something that Mark's interested in particularly, so I'll defer to Mark. Mark Durkner. I think we would all agree with the principle that it's better to ask the donor whilst he or she is still alive than ask relatives after their death, and I think we would probably all support the principle of trying to encourage people to have that conversation and to make an informed decision. But even with those efforts, of course, one can't force people to make a decision one way or another. Some people might just never get round to it. Some people might actually not really want to make a decision because it's too unpleasant to think about our own mortality sometimes. You said you haven't made a decision on organ donation yourself. Actually, I have. I've opted in, but there are many of the other things that come through my letterbox and email, which I am just too busy to deal with and think, well, I might deal with it some other time and of course I never do. So, for me, it's not an either-or. I think, yes, we absolutely should try and encourage people to make that decision one way or the other. But having the deemed authorisation as well covers that gap, as it were, of those other individuals in the way that Leslie has described. Stephen Cole. I think your point is very well made. The easiest thing for us when we go in to have a conversation with a family is if their wishes are known one way or the other. They're not then put in a position of trying to come up with a decision at a point in time when they're exhausted and grieving and haven't slept for two or three days. At the same time, signing up to the organ donor register as currently happens is an expression of a wish at a point in time. It's not informed consent. It's not the same as you saying, I'll have a hip replacement and these are the things that will happen. It's often not the full picture of information which the patient needs to make a decision in an informed way. And throughout the UK, we've made a decision that that is the process that we will go through. We won't have a formal informed consent situation in terms of signing up to the organ donor register. So I think the new legislation as proposed may take away some of that difficulty in that if you have not opted out, then you haven't made a positive decision not to go become an organ donor, then it will be assumed to be deemed and we can start the conversation from there. One of the real strengths of the 2006 act was that it afforded healthcare professionals the opportunity to work with families and provide the information at the level that family wanted. We do have families, for example, who say absolutely supportive of donation. It was on the organ donor register, do whatever you need to do. I don't really want to know anything. I'll answer your questions but I don't want to know anything. We also get families who want to discuss donation in minute detail. The act allows us to do that to provide information. That's one of the strengths of authorisation versus consent, where the word informed comes informed consent. I think that's really important to try to retain that because that has allowed families under some circumstances, for example, to go home and we follow up with them and take telephone authorisation as do our tissue service colleagues. So we actually work with the families to find the best solution for them. There's nothing in the bill as it's drafted. I would assume that would take away that ability. Would that be your interpretation also? Yeah, hopefully, yeah. Thanks very much. Emma Harper. Thank you. I'd like to ask just issues around adults with incapacity, because we haven't really covered that this morning. In our submissions it's interesting to describe how the provision stating that an adult is incapable of understanding the nature and consequences of deemed consent is therefore not deemed to have consented. But there's various issues around incapacity, whether it's a new issue or if it's something that's been prolonged or developed over a period of time. I'm interested in your thoughts of whether there is enough information in the legislation that allows incapacity to be considered so that people that don't have capacity are supported in this legislation. Stephen Cole. Thank you. I work with the patients who are in intensive care who are critically ill. 95% of those patients lack capacity at the time in intensive care. We would sign a short term lack of capacity rather than what you were mentioning, which is maybe a more long term lack of capacity. So there are two sorts of deceased organ donation, as I'm sure you'll be aware, those following circulatory death and those following brainstem death. For the patients who die following circulatory death, they remain patients until the point of their death. So the legislation that's pertinent to them is the Adults with Incapacity Act. For those patients who are brainstem dead, they become dead at the completion of the first set of brainstem tests, and so the legislation that pertains to them is the Human Tissue Act, which is much more favourable in terms of death procedures and things that you mentioned earlier. So in terms of the AWI for ICU patients, I think the bill, as it's written, is fine. I can't really comment, just not my area of expertise, on the chronic incapacitated patient long term, who has long term incapacity that predates their admission to intensive care. Does he look in anything to add? Only to say, I guess, over the years, we have come across families, and we always, as you know, adhere to the hierarchy of families, nearest relatives that we approach about organ donation. And we do come across relatives who are incapacitated for various reasons. Sometimes it may be as simple as the fact that they have consumed alcohol or drugs. Sometimes it may be that they have something, for example, such as Down syndrome, which limits their understanding of the process. Sometimes we have families occasionally who are so incapacitated by grief that they simply can't even respond to us. And, you know, in all of those circumstances, we work very sensitively with our intensive care colleagues. And if we're not comfortable that the family understand the process of authorisation, then we would make a decision not to consider that. Where somebody's on the organ donor register, however, we already have authorisation to proceed. And there is something around sharing knowledge. That doesn't happen very often, you know, in truth. But if that's sort of the question you're asking about taking authorisation also from individuals that don't have capacity, it's relevant. I just wanted to raise a small point, because it was raised with us from the panel this morning in terms of complex families and changing relationships, and sometimes next of kin not being clear. And I just wondered in terms of that what your experience has been. And in fact, in some cases, I think we heard this morning where decisions are then divided, especially between maybe a partner and a parent of the individual. We approach the nearest relative as opposed to the next of kin. Sometimes there's a slight difference in who that may be. And yes, occasionally we will find ourselves approaching a partner or who has been a partner for more than six months where there is still a parent. In a teenager, for example. Generally speaking, the amount of time that we spend with families, we come to a consensus. And we're reasonably skilled at doing that. If we have family discord, generally speaking, that is more likely to be, in our experience, two adults with a child. And the adults, for whatever reason, are separated and a father might say yes and a mother might say no. And again, it's about the decision of the individual if they've expressed a decision, is our starting point. But equally in those circumstances, we give time and space and we're there to do that. That's our job to spend however long it takes to help that family reach that decision. But it may be that in those circumstances to try to help everyone that we go for a limited donation and we may well consider abdominal organs but not cardiothoracic organs. And that allows both parents, if you like, to feel that they have had some input and control of the situation. In some circumstances, donation isn't possible if we have a real strength of feeling. The newspaper test of they stole my son's organs, wheeling him down the corridor, would not be something, I think, to the greater transplant programme that would provide detriment. So we wouldn't want to be in that situation. I think the most important thing in that conversation is time. Time for families to come to an understanding about what should happen. It's often easier if we have an understanding of what the individual patient's wishes were. The more difficult situation is where a patient had not signed the organ donor register when they were well and so the family didn't have any understanding. But generally with time and with skilled communication we can work through this. A sort of usual scenario to explain that is that a father might arrive at the hospital because he works locally and he accepts death or dying much quicker than the mother who's some distance away and she arrives several hours later. So people accept things at different rates and we have to wait for people to catch up and then move forward together, I think. Thank you very much. In terms of research and clinical research, that was also raised with us that some families thought that that would be automatically taking place. And in terms of that, I'm thinking of the Scottish Brain Bank and things like that, for dementia individuals not necessarily organ donation, is that an area as well which this potentially could be improved? I know there are very separate issues. Well, we take authorisation and do the social history questionnaire that you've seen for other purposes also for research, training, education and audit and Mark will talk about quality assurance as a welcome change to this legislation. And so we do that so that families don't have to answer those questions twice by a different set of healthcare professionals. And when we hold our remembering services, for example, we do acknowledge those individuals. Sometimes patients go to theatre for organ recovery and the organs are not suitable, but the organs can then be sent for research if we have that permission. And actually families, we write really nice letters back to families about furthering medical education and they are really very pleased to receive those letters and they also are included in receiving the medal on behalf of the Queen etc. Mark Turner, did you want to add? Yes, so apart from obviously the organs and tissues are taken primarily for clinical reasons, but there are clearly some that are taken and they are not suitable for one reason or another, perhaps microbiological contamination for example. And that is very important for us. We are able to use some of those tissues or organs for what we call process developments because a lot of the tissues undergo quite complex manufacturing steps and they require validation and quality control in exactly the same way as you'd expect for, say, a pharmaceutical to give you a conceptualisation. So we're very pleased to see in this bill quality assurance written in because actually we can't transact our jobs properly under the human tissue quality and safety regulations without applying those kind of quality assurance. I think, as Lesley has said, while the principal consent is for clinical use, research use and evaluation is also written in and obviously people can send to that or not as the case may be, I think that is a very different scenario from where one is taking, asking to take tissues for research purposes only. I wouldn't want to conflate those because in that scenario independent ethics will be taken, there will be an independent consenting process. So I wouldn't want to conflate those two situations. Thank you very much, Sander Hart. Thank you very much, convener, and good afternoon. I want to explore again similar to what I had asked the previous panel about the pre-death procedures and Dr Cole, who had actually mentioned that working and invested. Intensive care as well. Some people have concerns in regards to how the procedure is carried out and new to me, I didn't realise that if you opt into organ donation, I've never seen any information about it, that this is part and parcel of organ donation. That was a new one to me and I think you would probably agree that people should be told about that. Do you share the concerns that witnesses have heard and we get around pre-death procedures? How is it carried out just now? Should it be carried out under deemed consent or should it always be expressed consent? So that's kind of three questions. It's going to be quite a long answer. I'll try and make it as short as I can. So as you heard from the previous panel, there are a number of things that we do day in, day out for patients, some of which are quite invasive. For example, putting central lines into a patient, re-intubating a patient, giving drugs quite strong medications to bring blood pressure up, et cetera, et cetera. Taking blood, that sort of thing. What generally happens in terms of the current at the moment is that if a family agreed to organ donation, the worst thing that can possibly happen to that patient is that the organ is not able to be utilised because the patient is not physiologically optimised in order to allow a successful organ donation retrieval to take place. In the planned legislation, we've had a lot of discussion with colleagues in the Scottish Government about these interventions and as you say, pre-death procedures. It's not a great term but this is where we are. We've tried to stratify them into those which are routine, are painless and have next and no chance of causing harm, versus those which are less common, perhaps more invasive and have a greater chance of potentially causing harm. An example of that might be, for example, doing a bronchoscopy. So you put a telescope into the patient's lungs and you would under direct vision hoover out any secretions, any contamination within the patient's lungs. That's quite invasive. If you were awake, that would be quite uncomfortable but it's something which we do routinely to benefit patients who are on ventilation. So I think in terms of these procedures, it's right and proper to stratify them according to risk, as in patient risk, because remember these populations of people are patients, they're not donors, they remain patients until they die and then they become potential donors. Without talking forever, the level that we have at the moment in the proposed bill is about right. It's something that we thought long and hard about. Thank you very much. Families who say yes to donation after that point are pretty committed. They want something good to come out of the tragedy and they really want to save other people's lives. We are very careful to explain to families what tests or pre-death procedures need done to allow that to happen. We already provide families with the information of any tests that are done. So blood tests taken to support the matching of organs with recipients, urine tests taken to test for any infection or any kidney, obvious kidney damage, secretions from the chest to check for infection. So any test that we would do, we already explain. What I guess I would be concerned about is having to ask families more questions in a sort of a tick box manner rather than having a conversation with a family, which is, as I've explained, in order for donation now to proceed, we need to do a number of tests. These tests won't harm your loved one at any time and they're not painful and we'll be doing them to do things like ensure best matching of organs, etc. So that really is my thought on that. Thank you very much. Just one question on that particular one and I want to ask about the forms of the film, which will be a short one on that particular one. I think, anyway, in regards to the law society, they have raised some concerns about medical ethics. Are you quite content that the bill covers yourselves in regards to medical ethics? I think we should change the wording rather than pre-death, but in regards to that, as it's known at the moment. From the Scottish intensive care perspective, we've been closely involved with putting the bill under the detail of the bill. I think we feel reassured by the way the bill has been worded. I think that what we were trying to do is, as you alluded to in the last session, medical development takes place at a fantastic pace. Things that are not even thought about today may become commonplace next year. It was trying in many ways not to be too prescriptive about the list, but to talk, if possible, in generalities of types of tests. If we miss out test why and it becomes commonplace next year, then we'll end up in a situation where we have to go back and ask specifically about that. An example of that is in the past we specifically excluded the use of heparin in the potential donor because we were concerned that there was a small possibility that heparin could cause harm in terms of bleeds within to the brain. Our surgical colleagues regret that that took place and feel that heparin is very important in optimising the potential organ for transplant. It was that sort of example that we were keen to try and avoid. On the medical law, you're quite content in regards to that. Even the law society has raised it, so you're quite content in that respect. It's not a small one obviously because it's been raised many in any time. Obviously the bureaucracy around the 350 questions that people have to fill in and we heard this morning again from the panel we were speaking to that felt some of the questions were very invasive. They were embarrassing. We won't get into the details of the ones that they felt were very embarrassing, particularly if they've got their kids around them as well. Is there any other way we can shorten these questions or different types of things to put into the bill in regards to people who don't need to answer these questions? It's a very emotional time for them and they're not ready sometimes. The questions aren't absolutely necessary because our job is to ensure that transplantation is safe first and foremost for the recipients. What I do think, and Mark may be better placed to talk about some of this than I am, is that we certainly know that some of the questions that we're asking specifically for tissue donation and it may be that in the future we're able to develop a subset of those questions if we can identify early on in the process that the patient will never become a tissue donor. What we don't want to do is not ask the questions and then find out we have a potential tissue donor. There is a way of doing that and I have provided to our Government colleagues, so I think that they will come to you and turn some examples of questionnaires from Australia and the USA. I know that my own medical director, Professor Forsyth, has done similar from some of the Europeans and you will see they're pretty much all the same. I think that the issue of the authorisation form is a slightly different matter and I think we would work very hard to try to reduce any of the questions that are in that. We do that by asking the healthcare questions first so that we know ourselves professionally that we can exclude, for example, if we know somebody has had a heart attack, we're not going to approach about heart donation. If we know someone's a diabetic, we're not going to approach about pancreas donation and we will make those exclusions on the authorisation form to try to contract the process. The questions generally are very similar if not almost identical to those that are asked around in blood donation. Yes, I agree with you. There are very extensive set of questions. Whether they're 350, I'm not sure I'll take your word for that. Some of them, I would say, are nested questions, so you might ask preliminary questions such as have you been overseas recently? Has your relatives been overseas and then, if they answer no, you move on from that and if they answer yes, you go into a more detailed question. There are more stringent for tissues than there are for organs because sometimes the risk-benefit is slightly different in those two kinds of scenarios. They are very consistent with the questions we ask of blood donors. They're obviously phrased and framed in a slightly different way. They also tend to be very consistent both across the UK and across Europe and that's because of the regulatory framework that we work within. They're guided by, for example, the Human Tissue Quality and Safety Regulations in 2007, which is UK-wide, and is itself a transposition of the EU tissues and cells directives. The granularity around those is put in at a UK level by UK Blood Services Joint Professional Advisory Committee. Things change in questions. To try and give you examples, we have complex geographic exclusions because things like malaria and West Nile virus and chicken gun your fever changed their distributions in the world. It is a very complex set of questions but I would come back to what Leslie said. They are evidential based and they're there to try and secure the safety of the product. That is going back to the patient ultimately, so that's what's driving the complexity. There are still 250 questions. I would just make a plea that with the new legislation we can shorten the process as much as possible. The process already takes a very long time which is exhausting for relatives but also we heard in the last session about questions about intensive care capacity. Intensive care is a very scarce resource in Scotland, so occupying a bed for an additional 12 or 15 hours may in some circumstances mean that somebody else who needs an intensive care bed is not able to access one locally. Very briefly, Sandra. On the flip side of the coin, is there anything the bill of bureaucracy that makes it worse? Do you see anything that would drag it out even more that is contained in the bill? My understanding of the duty to inquire changes are that we would not be expected to go to the ends of the earth and be phoning relatives in Australia and whatever. We generally do always have the nearest relatives in the room or close by to consider if anyone has additional knowledge. That is a question that we ask in the medical, social and history questionnaire. Also, is there anyone else we should be consulting or speaking to about their decisions? I think that that is probably okay. I wouldn't like to think that the additional questions about pre-death procedures lengthen that because, as you saw from our chair theatre, the families really want to get back to the bedside. That is absolutely right where they should be, and we are very mindful of that. Good morning to the panel. Thanks again for your input, in particular Leslie Logan. I think that we were all very struck when you and your colleagues came for an informal evidence session, so thank you again for that. We talk about these being difficult decisions and difficult discussions to have with people enduring, as you said, the worst days of their life. There is an immense degree of pressure on their mental health around all the decisions that they have to make at that very short window of time. We also heard from transplant recipients this morning, which suggested that they also experienced a rollercoaster of waiting and having false dawns of getting the phone call, jumping in an ambulance and then being turned around. What strikes me is that we have no real longitudinal mental health specialist support for either group of people. Either the recipients in the long wait before they get an organ and in the convalescence after, or the family group members who make that difficult decision. Obviously, they do not need necessarily support until the very end because in many cases they do not know what is going to happen, but they need support around that decision and then in the weeks and months to follow. Do you think that there is a gap? Is this building opportunity for us to close that gap? I do think that there is a gap. On both sides, first for the recipient side, I did use to manage transplant programme in Edinburgh. I know that the social workers and the recipient coordinators follow up with patients who are called in for transplantation but then stood down because the organs are not available. I think that a discussion around the resource for that probably is very timely, especially if we are hoping to increase further the number of transplants. Interestingly for donor families, a couple of years ago I spent some time in Sydney with the Australian transplant and donation service. Earlier on this year I was at a donor in Scotland and we had waited some 24 hours for the sun to come from Australia. To be at his mother's bed site, he agreed to donation, and I used my contacts in Australia to ensure that he is invited to a remembrance service in Australia. The electronic conversation that I had with my equivalent in the Brisbane area was that she would also invite him to participate in what all Australian families are offered, which is up to two sessions with a psychologist or a bereavement counsellor to support them in the decision that they made through organ donation if there was anything that they wanted to pursue. That was something that I knew existed, but I have never had a family had that offer. We direct them to organisations such as cruise. We do follow our families up ourselves. We write to them within two weeks of the donation to give them some information about the recipients. We invite them to the annual service, as you know. On an annual basis we can provide updates, but we don't do anything specifically for those individuals whose loved ones have donated who might require on-going psychological support, unlike some other countries. Thank you very much. Stephen Cole, did you want to say anything other than to echo that? David Stewart. What assessment have you made as panel members of the Spanish system of organ transplantation? I was in Munich last week at the international donation and transplant society meeting and I was beefing up a little bit on Spain. First of all I would say that we need to be careful that we are measuring apples with apples. Our definition in the UK of a donor is someone who goes to theatre who has an organ removed for the purposes of transplantation. In Spain their definition of a donor is somebody who goes to theatre for donation. So we're not absolutely measuring the same thing. In Spain they have a system where they re-approach families up to six times for the family to say yes. We might feel that's a little bit harassing. So if a family say no, they'll wait half an hour and they'll go back in. If the family still say no, they'll wait half an hour and they'll go back in again. This is well understood in intensive care so their rates are high. There are also some cultural influences in Spain. The Catholic Church supports organ donation and they have quite extended families. So there are some demographic reasons and cultural and religious reasons why donation might be better supported there. Stephen has spoken, I guess, again about the intensive care bed numbers. But what's really interesting is that the slightest latest surge in donation rates in Spain are because of a new initiative, which they're calling intensive care for organ donation. That is that they are now approaching families of individuals in hospital wards who are not ventilated. Asking them whether, following the individuals, for example, a stroke is catastrophic in entering a pathway of care where they're likely to die, whether donation may be possible, and then electively ventilating the individuals. That does have significant ethical concern. Spain's donation after circulatory death donation is a different type of circulatory death donation that we pursue in the United Kingdom. They have the ability to retrieve organs in every one of their hospitals, whereas the UK model is that our retrieval teams are very highly specialist doctors. We have seven living abdominal retrieval teams and six cardiothoracic teams that service the UK. The model of healthcare is also very different. All of those things together contribute to, as you see, quite different numbers. Croatia is also a very high donating country, but that only has nine hospitals within its country. It's much easier to manage nine hospitals and move everyone in the same direction compared to Scotland that has 25 and 12 different health boards. There are real differences and we watch all the time to see if there's anything that we can consider. That's very useful. All three of you have heard my question to the last panel. Personally, I've always been wary of comparing different countries, even within the EU. Having said that, the very crude rates, as you referred me to say at the last session, is that the UK donation rate is half of Spain's, even assuming the same family refusal rate. That's still quite striking. I suppose my point is that, notwithstanding some of these cultural differences, is there best practice that we can pick up that may or may not appear in this bill? The other thing that I should have said is that the discard rate of our organs in Spain is very high. They are approaching and getting permission for a donation from patients that we might not have considered in the UK as suitable. The result of that is that the organs are discarded and not transplanted. That is very important to us, that if we pursue a donation, we are pursuing it with an outcome that is expected. We don't ever remove organs unless we know that they have been placed and accepted by a transplant centre for a named patient. That's another factor. I'm sorry, I've forgotten what you asked me the second time. I heard your comments of the previous panel as well. As well as public awareness and education, I would like to highlight the fact that Scotland has a lower number of intensive care beds per 1,000 population than the rest of the UK, but massively lower than Southern Europe and the United States. That's a cultural situation that we have developed within the UK and Scotland. Intensive care is a very scarce resource. My other hat is being a role in SIGSAG, which is the intensive care audit group, so I know about the numbers of patients admitted to various hospitals. One of the ways that we could effect change would be to invest more in intensive care capacity around the country. Although donation would be a by-product of that, it would also benefit the wider population in terms of life-saved and returning to normal health. The other thing that's worthy of note is that the further south in Europe you go, the higher the number of road traffic accidents that cause trauma. Only 3 per cent of our donors in Scotland come to us through road traffic accident trauma because our roads are safe in comparison to Southern Europe. That's about a useful point. Thank you. Thank you very much. Finally, David Torrance. Thank you, convener, and good afternoon, panel. Do you agree that it's with 16 being aged or deemed the operation in Scotland? Any views? Mark Torrance? Thank you. I don't think that it's very obvious to take a view on such a position on such a question. I think that that's an issue for people of Scotland and for Parliament. Whatever it is that is desired to be at the right cut-off, then obviously we will respect that and apply the appropriate regulations. Thank you very much. There's no different view from other witnesses. David Torrance? Thank you, convener. With different ages for deemed authorisation across the UK, could this cause any legal problems for transplants? I don't hear of any at the minute. We would still accept an organ in Scotland from a child that dies in Wales and certainly the allocation of organs has not been problematic in the past in those circumstances. I might actually be able to answer this question for you by analogy. When we changed the regulations around deferral of men who had sex for men for blood donation, England, Wales and Scotland changed to a 12-month and now a three-month deferral. Our Northern Ireland did not change. It remained with a permanent deferral at least for a period of time. We obviously had to come to an understanding with them because sometimes in terms of shortage we support them by providing blood for example. And they agreed that they would receive blood from us, from either NHSBT or from SNPTS, which obviously was selected and screened according to our donor selection and testing criteria, not necessarily theirs. And so I think in the scenario which I think you're suggesting where there might be a difference in the age between say Scotland and England, both countries would have to accept the application of criteria in the relevant jurisdiction. But a relatively straightforward matter in Europe. Exit, thank you very much to our witnesses once again in another very useful session. We will now briefly suspend while the panel leave and we will then go into private session. Thank you very much.