 Welcome to the 30th meeting of the Health and Sport Committee in 2018. Can I ask everyone in the room to ensure that mobile phones are switched off or on silent? While it is acceptable to use mobile devices for social media within the room, please do not take photographs of the court proceedings. The first item on our agenda is the third of our evidence sessions on the Human Tissue Authorisation Scotland Bill, which proposes to introduce a system of deemed authorization for organ donation. The session today will focus on evidence from Wales reviewing the Human Transplantation Wales Act, which came into force in 2015, in order to allow us to explore the act in greater detail and the impact it has had on organ donation rates in Wales. I welcome to the committee Richard Glendining, who is now with Ipsos Moray, formerly director of social research and lead researcher on the evaluation of the Welsh Act growth for knowledge UK. Dr Frank Atherton, chief medical officer and medical director of NHS Wales from the Welsh Government and Dr Katja Imson, regional clinical lead for organ donation south Wales, Cardiff and Vale University Health Board. I welcome you all today. Thank you very much for attending. It's certainly much appreciated by this committee and we are very keen to learn the lessons of the Welsh experience and experience elsewhere. One of the issues clearly, or the central issue, I suspect for this committee and for the Scottish Government in looking at a change in the law, is will a change in the law enable an increase in the rate of donation? Will it enable an increase in the rate of transplantation? I would ask the witnesses if they would perhaps like to start by offering an overview of the general perception from the evidence as to whether indeed the bill has met or is beginning to meet its fundamental purposes. Shall I begin? Thank you very much, convener. Thank you colleagues for inviting us here to give our experience in Wales. It's been a great pleasure to share our experience with Scotland and indeed with other countries. I should emphasise that there is quite a lot of interest in looking at experiences to date. Of course it is still relatively early days in Wales. It's only three years since full implementation of our act and so we're still in learning process around that. We do generally believe that this has been a positive move. We can talk about the stats and the figures and the donation figures and consent rates etc and I'm sure we'll get into some of that. But in general terms we feel that donation rates are going the right way. We still have too many people in Wales and in the UK who are dying while they wait for organ donation and that is a tragedy in every individual case. We want collectively to work on that. I suppose my overarching point would be that the legislation has been really important as a part of our process to improve organ donation rates in Wales. It's not the whole story of course. There's a whole range of things that need to happen and we know that. We need to get the infrastructure right for organ donation and we need to get the public engaged. That really has been part of the most important part of our journey I would say about how we've used communication during the development of our bill and then the pause between the royal assent and full implementation of the act and then as we've gone forward through implementation. So the legislation we believe is a really important part of changing cultural attitudes and persuading the public and working with the public so that they believe that organ donation is the right thing to do. So our success is very positive. It's still a day as I say but we believe that we have a lot of useful experience to share and we believe that this is the right thing for Wales. It's very interesting convener that there's very little public dissent now in Wales I would say. There was a lot of discussion and dialogue when the bill was being proposed in the white paper before that and that was a really important process that we went through just as you are now of course going through the process in Scotland but really we don't have a lot of ab reaction I would say to the legislation. There's high levels of understanding and awareness of the legislation, high levels of understanding and awareness of the choices that people now have to make and a generally positive feel that this has been the right way to go for Wales. Thank you very much. I think the initial evaluation of the impact of the act suggested that donor rates had not increased while family consent rates had now. Clearly there have been developments since then but I wonder if witnesses have a view as to why one of these factors went up faster than the other and whether there was any reason for the lag if you like in the increase in donations. I don't think there's any expectation in the first place that there would be an overnight change in this. It's a gradual process as people's knowledge and awareness and support for the change grows. It's reasonable to expect that you'll see change across time and one of the concerns when we did the impact evaluation was a relatively narrow window we had to actually look at data. We only had seven quarters of data and typically in Wales there would be about 15 donors a quarter so it's a very small sample to be looking at. We extended it as far as we could. There are a lot of positive signs in terms of some of the softer measures around attitudes from the public, attitudes from NHS staff but during the informal evaluation period that we reported on a year ago there had been no significant change in donor levels. A very small rise over the 21 months before and 21 months afterwards but a very small change. In the last 12 months there's been a marked increase. It looks like the last 12 months we'll have seen over 80 cases which is probably the highest figure we've ever had in Wales. The evidence is that there's a build-up of knowledge and awareness and support and then if you like the rising donor levels we'll come after time. Add to that that I think there was in the immediate time period after the implementation of the new legislation. There was a lag period where the specialist nurses acquired familiarity with the terms of the legislation so obviously they understood the act in itself but how they could use that within their conversation when they were approaching families and deeming consent. It took some time for the specialist nurses to become familiar and confident in using that change in terminology. There was a real shift in practice from what had previously been a family and relative-centred approach to one that was more around the presumptive facilitation of the deceased decision and it took some time I think for the specialist nurses to acquire the skills around that conversation. Was there any change in the rate at which families were approached or was it simply a case of, as you say, a difference in the way that terminology was used? I don't think there was significant increase. I think there has been improvements in how the teams are referred patients so there has been improved recognition outside of immediate transplant teams and improved recognition and referral so our ability as in intensive care and emergency departments to identify potential donors and refer those patients so there has been a degree of increase but the substantial change was around the specialist nurses familiarity with the use of the different terminology. I'm interested to know about the numbers of people who have opted in Wales at 41 per cent according to your submission for committee Dr Atherton. That means that there's 59 per cent of the population that still haven't registered whether they want to opt in or opt out so you deem their consent so I'm interested to know if there's been any analysis of the ones that haven't recorded any wishes to say to I guess to decide on the extent of how we're going to get those people to opt in or opt out. You're right the number 41 per cent have chosen to opt in and that number has increased over time so it's been gradually rising so that's a positive thing we believe. The number who opt out because people now have an opportunity to opt out is about six per cent and seems to be stable and that's good news. Younger people tend to be slightly more likely to be opting in and but Richard may have some further numbers on that but what we never expected to get to obviously to a hundred per cent what's really important is that people understand their choices and so you know the levels of people we survey on an annual basis so we know that over 70 per cent 70 to 80 per cent of people now know what their choices are so those people who have a view and do not wish to donate have a clear understanding and an ability to do that and it's very reassuring to us that the number stays stable at about six per cent opting out. You could just add a little bit to that that the proportion you have done made no decision one way or the other and they there is still interesting to see that across the NHS staff research that we've done and with the general public about three quarters or more of people support the idea that no decision implies consent so there is quite a lot of understanding out there about the implications of not making a formal decision and we do have as Frank says 41 per cent who are now opted in within Wales which I think is the highest figure in the UK it's continued to rise and there has not been much of a rise at all in those who've actually opted out but there's a general understanding across the public that not making a decision does imply consent. I think you're right other than Scotland which where we're at. You mentioned young people and has been more likely to opt in do you have any concerns that there might be groups that have been missed out that maybe need to be more targeted I'm curious also to know whether the actual NHS staff themselves have been assessed as to whether they are opting in or opting out. There's a high level of opting in amongst the NHS staff than the general public so there's definitely a higher figure there and there is variation in levels of actual positive opting in I think actually younger people are a bit less likely to opt in perhaps it's not an issue that's very high on the radar because of their age so there are needs to still further communicate and push that point across to people. A NHS campaign that was launched around the time of the before the implementation centred around the choices that people had and the three choices that they had were to opt in, opt out or do nothing can understand that by doing nothing their consent would be deemed. So do nothing was very much presented as an option that people had and the expectation was that that would be seen on the same level as an opt in. I think in the first year or two after implementation there was a sort of a feeling that there was a sort of a two tiered opt in so if you opted in on the register it was a stronger opt in than somebody who had decided to deem their consent but that gradually with time certainly the health care professionals working with that those families of patients that have have deemed their consent or to have their consent deemed see those two levels of consent on the same level and present the information as such to the families that they're working with. Policies if I misspoke it's younger people less likely to opt in. Policies if I give that misrepresentation. Your question though about groups that we worry about brings us to the question of ethnic minority groups because we do recognise and I don't have figures to hand but we do recognise that black and ethnic minority groups are less likely to make those conscious decisions, less likely to be opting in as owners and we've done some specific work. As the communications has evolved over time in the three years since implementation and we've recognised the need to do that and there was a lot of work before the bill came in to try to understand the views of religious leaders, ethnic minority groups etc but that is a group we believe we still need to do more work to target. Thank you very much Emma. No I think that's it thank you. It's up Keith Brown. It may be evident from the evidence given but it's just a factual thing first of all if somebody in the well system opts in and subsequent to their death the family or subsequently the family and the clinicians have a different view can that be overturned? Somebody's conscious decision to opt in can be overturned? It is, yeah that is a fact. We always described it in Wales as a soft opt out process so Katja may well have more information and deals with this on a more regular basis at a personal level but the policy was always that families would have the opportunity to make a final decision bearing in mind the wishes of the deceased relative that they hadn't. The good news we believe again in Wales is that although there are occasions where families do overrule either the presumed consent or the opt in consent that people have given before they become deceased those those proportions are going down. One of again back to the communications issue one of the things we've recognised really just more last year is the need for very focused to provoke conversations within the family of people's decisions well of the issues but also of the conscious decisions that people have made so when people do opt in we're encouraging them to have those conversations with the family so the family are aware of the the the the desire of of their relatives before you know anything untoward happens and that's a messaging that we're continuing to use now in in Wales and that's a key stream for the future but Katja you obviously deal with yes so there I think there will always be families that have to make the decision to override the the decision that their deceased relative had made and there'll be a number of reasons why people make that choice for the clinicians and the specialist nurses that were involved the the sense is now that we're able to push families harder in what can be a very difficult time well it is obviously a very difficult time for the family but because of the the change in the legislation perhaps we're empowered to have more presumptive conversations with families and then to sort of push and challenge families and to really try and ensure that they do facilitate the decision that them loved one made in in their life I think it is key to ensure that the public is educated to have conversations with their family to make sure that their wishes are known much as they might choose to make known whether they want to be cremated or buried after they've died but just in the same way as they make decisions about other aspects of what would happen to them after they die that they make those choices clear to their families but it I think it'd be impossible to work with a legislation that somehow enforced the decision to be pushed through irrespective of what the the family's position was in that situation because ultimately the specialist nurses and the clinicians that are working with that family would not want to harm that family in the sense that they would push through donation if it was clearly something that the family felt very much that they couldn't support and you need to have the support of the family in order to be able to proceed to donation safely so you need to be able to ask the family questions about the the health and the some of the social aspects of the potential donor's life in order that the transplant can proceed safely so to try and to try and make that happen without the family being positive and on board about the process would be almost impossible I think. Is this the point about the conversation? This is a key part of the process and it's less difficult for the specialist nurses to have the conversation in the knowledge that more people have been talking about the issue so in the latest research I think 55% of people said that at some point they had a conversation about organ donation with family members but that still there's a lot of people who haven't had the conversation and some of those conversations won't be necessarily very contemporary so there's still a need to promote that conversation because it does make the conversation in due course less difficult it's a hugely challenging set of circumstances for sure but it becomes slightly more straightforward in the context that the conversation may have taken place within that family and that the wider family were aware of the wishes of the individual. If I can ask one very quick question for a factual answer before the substantive question which is would the reverse work if somebody had opted out can that be overturned by the family and clinicians? It can in practice if the family can provide evidence that the person had made a change in their decision so for instance a family might present evidence that well he did decide that a few years ago when the legislation changed but the other night we were talking to a family whose son was waiting for a kidney and he said quite clearly then well actually on balance so I wouldn't have a problem with that proceeding so we would ask families to provide sort of evidence around what sort of conversation they had had to support that change in decision but potentially that could happen it is the last known wish of the person that you are you are working with so the decision that they've recorded on the ODR might not be the last known wish. In the substantive point where there was my concern is where the rights of the donor come and all this and it seems they come behind a number of other groups essentially when that person takes a decision as to whether to opt in or opt out or do nothing if it's the case that whether it's opt in or opt out that their own decision taken in full possession of the facts is overturnable whatever it is why was that during the passage of the bill subject why was that decided not to put that on the face of the bill except in the circumstance you've just mentioned where additional information can be offered but it wasn't put on the bill wasn't made as far as I can tell maybe it wasn't the communication strategy why was it not made plain to donors that really there expressed few either opt in or opt out can be overturned as a reason for not putting the family veto if you like on the face of the bill when we may need to go back to to look at the bill because but but I believe it was clear on the bill that this was a soft opt out process by which we mean that the which it was entirely means that it is overturnable so you know you may we and you may need to kind of look at what was actually on the face of the bill and my belief is that that was pretty clear the evidence in scotland is that the convention is clear but it's not in the face of the bill and I guess the question is simply is that right and is that the Welsh model as well which we deduce it is but clearly anything further you would wish to come back to us with on that would be would be very welcome you can be in a good morning to the panel thank you for coming to see us today and I'd like to explore the issues around why families override and we had a very illuminating meeting with specialist nurses who took us through a role play of the conversations that happen either prior to death or just after death where a patient is in a situation where their organs will be viable and they made it very clear that one of the barriers in Scotland is the sheer number of questions that are asked of families at that time and there is it struck me that there may be a bureaucratic impediment to this sort of successful discussion with families at time of death and actually you know they are clearly experiencing one of the worst days of their life they may have to answer several hundred questions in some cases and I just wondered if you could explain to us what happens in Wales around that and whether it is as bureaucratic as we have it in Scotland and if you've found any workarounds or shortcuts I'm not sure it's bureaucratic as such I think there are a number of questions that will be asked of families and that is in order that the donation can proceed in a safe manner so you do need to ask quite deep questions of the family about their social history and about the patient's health in order to be able to ensure that transplant goes ahead safely and if the family are unable to support those questions then it would be difficult to proceed with donation. I don't think they're presented in a bureaucratic way because ultimately the specialist nurses are very well trained and experienced and able to manage families in this situation very sensitively and compassionately so I like to think that that conversation doesn't present itself as a sort of a tick box and a you know a shopping list as it were but perhaps that's the way it might look if you were to simply review the forms that the specialist nurses use but that conversation would take place in a compassionate way. I think some families will look for more information from the specialist nurses about how the donation process goes so might then be presented with further information by the specialist nurses about the processes pre-death or after death. Another families will want less information because they simply don't really want to know when they're happy to let the process run its course so the specialist nurses are able to share information as and when it's needed but there are a series of questions that need to need to be addressed and answered in order that donation can take place safely. I understand that and I should say that the specialist nurses that we met had a wonderful manner about them and they actually turned those questions into almost a conversation about the life of the person who just passed away and it was actually quite a cathartic experience I think for well certainly in the role play we experienced. I just wonder if your two colleagues would have a view on that and whether we could be doing things in a more simple manner. Really all I can do is echo what Katia has said. The last thing we need is to have layers of bureaucracy when people are going through these very difficult circumstances but there are safeguards that need to be put in place, information that has to be gathered and what you just described I think is the way to go about it and that's not about legislation that's about you know policy and practice really. Nothing particularly to add to that point other than specialist nurses continuing to need support and guidance about best practice that evolves over time so it's a continuous process of updating knowledge. So a very short supplementary to that before I move on to a different area I think what I'm driving at here is for me one of the most jarring moments of that role play was when they started asking about very intimate aspects of lifestyle and particular risky behaviour and it strikes me that actually families may not know about risky behaviour and so it's a subjective viewpoint it's like well I know you know I have absolutely every faith they never engaged in that kind of practice but that's not a surety there's no guarantees there and obviously we'll be testing blood and tissue for evidence of contamination or disease so do we really need to be asking those very sensitive questions if actually we're going to be using very strong clinical measures to check? I think it's set out in our code of practice that the expectation is that you will explore those themes with families and that our experience in that over the last few years has suggested that it is necessary to ask those questions of families. I don't think it's I don't know the evidence behind it or what work has been done to try and prevent those questions needing to be asked but it's my understanding that there are an essential part of the process of safe donation and transplantation taking place. Okay that's absolutely fair enough just second area is about mental health support and starting with families because we're talking about families what mental health support is offered to families both in in that initial sort of 24 hours around the discussion about organ donation and in the weeks and months following the decision to donate or moving forward to the donation? So I think it's important to understand that the process of consenting or authorising for organ donation is a normal part of end-of-life care and that it doesn't require any particular special support in terms of mental health or sort of psychological support for those families. In many ways the evidence suggests that families who've gone through the process of donation get enormous benefit from it and it's a very positive outcome for families at otherwise very bleak time. I don't think that any particular psychological support is required for those families over and above what should be offered as part of standard end-of-life care and bereavement care for families going through the process of a loved one dying. Okay that's very helpful and final question if I may convener and this is actually perhaps more prescient. We met with organ recipients last week it was a very powerful meeting and one of the things that we were very struck by was the absence of mental health support in Scotland for people on the transport list and that is and they described it themselves as a roller coaster that you might get several calls in the middle of the night to be ready for transplant only to have that find yourself stood down as it were for whatever reason and that can be tremendously hard particularly for people who are very ill to begin with. What support in Wales is offered to those who are on recipient transplant lists? Because I don't really work on the on the recipient side as such I'm very much on the on the other side of the process but I think it is clear that there is a psychological problem or psychological difficulties for patients in that state they're facing kind of chronic illness and this uncertainty about their their own prognosis in the face of waiting for an organ but also at the point where they do receive the organ the knowledge that that organ has come from somebody who's deceased is in itself a psychological problem and that some support I'm sure is required from them but but quite what we offer in Wales I'm not I'm not sure likewise I can't give you a direct answer at the moment but I recognise the dilemma and the problem for people that you mentioned and what I'll do is when we get back to Wales we'll just check with service providers I don't believe that there's any specific mental aspects of mental health that's dedicated to this but if there is we'll let the the committee know would be helpful thank you just a very small supplementary please having you know listened to evidence and also met with families as Alex Cole-Hamilton had mentioned the one thing it came through positively all the time was they felt it was a gift rather than be deemed consent I wonder did you get the same in Wales when you were talking to the people they seemed to think it was a gift that's what they said rather than the state interfering type thing it was it was much discussed in the in the consultation period leading up to changing our legislation that the concern that we were somehow remove removing the altruistic gift that donors were offering at the point of death by making legislative change around it and it was much discussed and there was concern around it it is hasn't been born out since we have implemented the the the legislation change there hasn't been a sense that people no longer see it as a gift it is some still seen and very much valued by by the general public by people involved directly and closely with that process as a wonderful gift and I think key to that is celebrating the life of the donor with such things as the st john's awards and other kind of softer things outside of legislative change which really celebrate and ensure that positivity is maintained and and and sustained thank you chief thank you very much i had a small supplementary going back to the questions from Keith Brown on family override and and you mentioned that there were still circumstances where somebody was either deemed consent or had positively opted in but that the family might take a different view is there any difference between those two categories though in in the rate of that or is are they both so smallest to be statistically insignificant it's the first part now so the point being the group of people who have positively opted in versus the group of people who are deemed consent is there any difference in the evidence on family override of those wishes express or otherwise so i think what is difficult to interpret from the raw data if you like is in the immediate period after the implementation i'm not sure we were very good at recording where people were on that spectrum so when you were overriding perhaps a deemed consent it isn't really clear from the way we collected the data and recorded information whether that override was because actually it was an expressed wish verbally with the family or whether it was a clear override of a known decision if you were to mean so so i don't think we really had that gland granularity of the information at that immediate time after the implementation phase i think we're better at recording it now because we've understood better those different groups so that information is better captured now and certainly in all groups we've seen a reduction in overrides so we've seen a reduction in known expressed wish and reduction in deemed consent overrides but it's really quite difficult to tease out the information we're also talking very very small numbers so it's difficult to draw any true conclusions from it okay thank you very much uh miles please thank you uh convener and good morning to the panel um i wanted to ask um a couple of questions around consent rates the submission from dr atherton highlights consent rates um in wales have increased and are now significantly higher than england um so i wanted to know from the panel what do you attribute that to has it been um this a national conversation obviously which has taken place in wales um and do you think this can actually be maintained and now that legislation is passed um and you know is out of people's minds maybe in wales well i'll start off richard may wish to come in on some of the figures but um uh we we do see consent rates you know increasing um and um that's that that is one of the positive things that we we've recognised as one of the markers of the program really um your question was about whether uh there's anything you know what part is the legislation playing that versus what part does the communication playing that has been an issue that we've been trying to disentangle you can't fully disentangle them because these uh are very interrelated uh but but but we do believe that the the ongoing communication uh process is required and what we see is in some of the the things that we measure we do see a kind of dropping off when communication dips and so we recognise that we need to both continue communication on an annual basis and also to tailor education towards specific issues so we talked earlier about the the issue of having family conversations for example um so um so so so we do think that the the rates are increasing or improving um and uh and that is a consequence of both the legislation and our communication processes if i just to echo franc's point there the um percentage there's gradually risen and at 41 percent it's been just creeping up year by year over a period of time but the nature of the well system and the quite widespread recognition that no decision implies consent may cap that figure so it's not going to go necessarily surging ahead it may well continue to rise because it's a gradual build-up of awareness and knowledge okay thank you and in terms of um age of consent um the bill which we're looking at proposes a deemed authorization would apply to those aged over 16 in scotland now obviously in wales it's 18 and i just wondered from the witnesses um why was the age of 18 chosen in wales chosen because that's in line with the mental capacity act in wales um but you might want to ask the lawyers but that was my understanding was that it would keep it in line with other legislation in wales um yeah to do with um with that and with our general definitions around you know in a range of legislation around what is you know at what point do people be classified as an adult and able to make mental mental have sufficient mental capacity to make make decisions of their own and given that if this bill passes in the Scottish age of consent is 16 there's no specific issues around NHS wales accepting organs from a 16 year old from scotland as far as you know i can't imagine that there would be that we would um just much as in scotland i'm sure you would be receiving organs from people who have had their consent deemed it wouldn't be an issue to to deploy the the act to receive organs from other nations i mean our approach in wales has always been that the any organs go into the general pool for for uk wide basis and and that would apply to scotland as it would apply to wales we would expect thank you very much at david torrance some of the responses to committee have highlighted the need for adequate efforts to inform the public about opting out um what avenues are available to people to opt out in wales um so people can opt out on the website and you can opt out through your driving license still um but people are encouraged to go and opt out by the the website that the NHS that the Welsh government sort of publicize and have links to whenever they send out their public information we did explore the use in addition to the the the the routes that catch your mentions we did explore whether it would be possible to do it through primary care records that became quite problematic in wales and in fact we didn't go down that route and the reason was that um there's often a delay between um between somebody making a decision through primary care perhaps a paper based system because we haven't got our electronic systems quite as as rapid as they should be and and things then getting onto the register and it was seen that there might be a circumstance wherein somebody could have made you know should have primary care an election say an opt out election but that wasn't recorded in that small window if somebody was to become deceased it would be a contrary to their wishes so so so we we looked at that and we discounted and we tended to use the the routes that catch your mention difficult to reach groups like a percentage of population of difficult reading writing or a deaf community how did you manage to communicate with them so sitting with the Welsh transplant advisory group there was an advisor for the ethnic minorities and for disability and disabled groups our specialist nurses also did certainly in Cardiff a number of sort of reach out sessions to disability groups to try and raise awareness in those groups and worked with other kind of faith leaders as well so so it both came from work that the Welsh government did but also from within the health care professionals such as the specialist nurses doing sort of reach out work into communities as well that that that work to to try and understand the needs of special groups and people with disabilities of whatever nature did translate into the communications materials that we then produce everything was produced in braille in numbers languages in large font etc so so we did taper the tailor the information and communication to the needs of the community thank you very much for coming to give evidence today now we've gone to an opt-out system and we have retained an opt-in system and failing those two options being taken we're going to deem consent i just wondered where you thought the public understanding in Wales is of the potential decisions that they can make where that stands at the moment that's one of the issues that we we do look at very regularly um and again it's it's something that we've seen the the figures rise year on year um i haven't got the latest figure in my head but it's it's around 70 to 80 percent now of people who understand what their options are we do we did see one year when that dipped slightly and we recognised the the need to intensify our communications around that and to remind people of their options so it's not something you can do and forget it's not a one-off thing it's something that you have to continually keep drip feeding as part of your communications message but we do feel we have we have very high and now back on sustainable levels of public understanding of those three options okay if i could uh convener i think drmson you touched on this but if if the communication is at a level and a marketing point of a better expression it's at a high level and we give every option possible to those who wish to opt out we make that that that decision as accessible as possible why retain opt in because for my if the communication is particularly good and we and you deliver you deliver that level of understanding why retain the opt in because i think that what we're trying to explore here is is an opt in is a decision an opt out is a decision deemed consent in those circumstances is potentially a non decision and an easier to override so why retain the opt in it's not something that i i've given thought to i i suspect it in part it'll perhaps be historical because in the UK we've always had the organ donor register so there's always been this opportunity to opt in since transplant became an option and donation became an option so it might in part be historical but i think it should it also encourages people to consider the the opportunity that it is and we know statistically that most people when asked want to be donors but less people actually take the action of registering but i think by maintaining the opt in register you allow people to say very definitely and clearly in the event of my death i want to donate my my my organs and it will take some significant time and an awful lot of education i think for the public to to to see that on the on to see that on the same level as not registering there um i'm trying i'm going to lose myself a little bit but the because we've always had that register and there has always been that that opportunity to to register your wish to be a donor to lose that facility for people to make that positive choice i think would go against um the the positivity around organ donation for it only to be an option to opt out would would be a step backwards i think um for for the the public of scotland um well i mean there is something about aligning with the register so we have a uk register and we need to you know we need to be mindful that other countries you know have different policies at the moment different practices and so we need to align with the register but but the other fundamental point that we touched on earlier was the one about having an opt in a conscious decision is something which is really important to help to provoke those conversations within families because we need to have those conversations whether it's deemed consent or opt-in consent to to um to to to to to prevent that issue that we talked about earlier of families kind of overriding decisions so a conscious decision that's discussed in a family would seem to us to be the best the best option because it would provoke those discussions and lead to higher organ donation rates sorry sorry to obviously what we're looking for here is to try and increase organ donation as much as we possibly can that's the outcome that we're all looking for but what i think what i'm pushing out here is if we give the maximum opportunity for people to opt out i'm just wondering the conversation with the family to say you know your loved one had this opportunity to opt out and the decision was to remain within deemed consent would that not be considered considered as a positive decision i think my concern with that approach is that you're only allowing people to make a negative choice um that that that in that set in that situation the the education campaign the publicity campaign campaign that you would have to launch into would all be just around making a choice not to not to donate and register your wish not to be a donor um and and that negativity and the publicity with the negativity there might might go against uh the the the populate popularity of organ donation as such if you sort of mean that it would mean that people would be would perhaps just take away the message that that that actually they should register that they don't want to be a donor that that you might lose something in your messaging to the public um Richard do you have anything to add in these in these areas from a communication perspective that's that's absolutely fine Emma Harper thank you again i'm interested in issues around deemed consent and people who might have an incapacity or they don't have the ability to maybe understand what deemed authorization means the bill includes safeguards that so that authorization for donation can be deemed for or cannot be deemed for certain categories of people with incapacity and it talks about people who have over a significant period lack the capacity to understand deemed authorization so do you think the the the bill presents enough information so that people who don't have capacity won't just be deemed to provide consent where they haven't had the ability to maybe understand and what do you do in Wales for instance with that I think the the legislation does protect that that group of people and the code of practice really puts it in the area for the specialist nurses to explore so of course people who lack capacity can still donate through the process of the the same as we had before the legislation whereby their thoughts around donation and how they felt about donation could be explored with the family and you would go down the road of allowing them go down to the route of allowing them to become donors through their sort of expressed wish but the consent wouldn't be deemed in the same way as somebody who had capacity in their lifetime and and the the work around that and the conversation around that takes place by the specialist nurses operationally at the time in our papers it talks about the Scottish independent advocacy alliance said that the provisions in the Scottish bill need to be strengthened because to support adults with incapacity and it it talks about because the word significant period of incapacity so does that need to be more prescriptive because significant period means what a month a week six months should that be more stronger it is it isn't clear there isn't a specific time period in our in our legislation um the there would be advantages and disadvantages potentially on in both ways that it would become that you would have a sort of a cut off where somebody suddenly lacks capacity and i think it is safer in some ways to allow the healthcare professionals involved with that patient to sort of understand what uh that who that person was and when and how long they didn't have capacity for um and and make a decision as healthcare professionals there so to have it in the code of practice that it's the duty of the healthcare professionals to explore whether the patient had capacity to deem consent um and the timing and the length of time around when they didn't have capacity i think it is i can't see an advantage to having a specific cut off because you might then have a a patient who will lack capacity for just a few days more than that where it wouldn't sit quite right so i think it is best to leave it to the judgment of the healthcare professionals involved at the time thank you very much very much and good morning thank you for coming along i wanted to ask you some questions about the pre-death procedures obviously the scottish proposal the proposal from the scottish government is slightly different from the proposal that's put forward by the wealth government because you are looking at under the human tissue act 2004 and our proposal is that there be more clarity and there will be guidelines in regards to any procedures for pre-pre-death i just wondered if you could clarify or give us a bit more information about what happens in wales particularly under deem consent even for pre-death procedures so in terms of pre-death procedures we the the things that it's accepted that can be done to a potential donor pre-death in order to facilitate them becoming a donor are kind of agreed at a more UK wide level with the work that was done by UK donation ethics committee so there's accepted practices and work that is and things that is acceptable to to do to support donors pre-death in order to facilitate their ability to become a donor um i don't think that we approach families and ask families specifically for consent for all of those different types of procedures um unless families seem to be particularly looking for information and want to understand it in greater detail i think it's something that is accepted practice by the healthcare professionals looking after the the potential donor at the time um and that we understand that the family might not in all circumstances wish to know the the finer and more slightly difficult details around around the medical actions that are taking place with the family to the donor thank you convener it certainly seems very different from what we've heard from from families who have donated we heard from you know that person basically who went through this but was actually talked through it and was able if they were so wished to see some of the procedures that you said earlier on in your conversation about um you know people's consent and people understanding from your answer there people don't seem to understand that the pre-death procedures actually go ahead under the human tissue act 2004 where a body can be kept alive for the organs apparently and under deemed consent i just wondered do you agree that under deemed consent that the same process can go ahead as you explained in wales families do do understand and families are very much involved in the process i think what i'm getting at is we wouldn't want to sit in a room with a family and say do you agree to this blood test and this blood test and this blood test and this blood test do you agree to a starting this infusion and that treatment and we're going to give some steroids and start this type of treatment i think it's the specifics around that that are unnecessary perhaps to go through with the family but the family would be very much involved um and um have the opportunity to observe things such as the the the kind of certifying death by neurological criteria to watch the brainstem death test taking place we would support and encourage that if it seemed that the family were were wanting to to to have that kind of that level of involvement and not all families choose that but those that do we would support that i think it would just be important that it doesn't become um you don't have to consent to every specific activity that that you might need to undertake to the potential donor basically under the deemed consent then obviously if it's been obtained you haven't said anything and it's the deemed consent um you support this type you know yeah i would say that deemed consent would be the same as expressed consent um and people that adopted in on that level in terms of the the the problem is of course when people are signing on to the organ donation register i'm afraid it's people are uninformed really about the process that will be the taking place that that is something that most people unless you work in intensive care environment or an emergency department type environment you're going to be unfamiliar with the process of how somebody goes through becoming a donor and trying to share that sort of information in a publicity campaign will will probably not be in the interests of the of the vast majority of the public who simply won't want to to really understand that at that level of detail um so at the time then that the potential donor is going down that route families will be given that information um and shared that information with them um as is appropriate in a kind of a sensitive and compassionate way and given the opportunity to observe and and understand but you wouldn't want to put the family through the process of a kind of a tick box for every single investigation or test or additional infusion that you might start as part of that process so just in legislative terms in in in wales uh um this was looked at when the the bill was being discussed uh in the assembly and the conclusion we reached was that section 43 of the human tissue act of 2004 so we chose to replicate the wording in that that was in in the the hta act um now as i understand it and i'm not a specialist but obviously your Scottish human tissue act is is slightly different so i that will obviously need to be carefully looked at but we chose to align very closely the the the two pieces of legislation so so that thank you i know it's a difficult sorry to it's a very difficult subject to broach but it was something that had been raised and i've kept an interest in how it works in other areas so obviously we're proposing slightly different uh where there'll be a wee bit more information and guidelines through that but thank thank you very much thank you very much and uh can i just in conclusion uh refer to frank atherton's uh very helpful evidence in which you compare the Welsh legislation the Scottish legislation and draw conclusions about the effectiveness of the Welsh legislation to date having provided answers to the questions committee members have is there anything in addition that either frank atherton or the other witnesses feel we should bear in mind as we come to the next stage in this process process to thank the committee you know this is a journey which we're all on in the UK and it's good that there's a shared journey it's one of many many experiences where you know i believe we can learn and share across different countries so thank you for the opportunity and uh good luck with your deliberations back up with the casino convenience s thanks very much for your evidence just one thing though the response you gave previously don't atherton to miles briggs about the 16 year old situation i know that was probably not somebody anticipated just to see if it's possible when you do come back to the committee with some written evidence of being just the idea that a country which is passed a law which says you must be 18 to have an organ donated would then accept ones from 16 year olds kind of jars a little bit just if there's any you know basis for that you could provide back and we'll shall be really useful thanks thank you very much can i thank the witnesses for for your very comprehensive evidence and look forward to hearing from you a little further on the basis of our conversations thank you very much we'll now suspend briefly um and we will resume in a in two or three minutes with one further item in public resume with agenda item two which is an opportunity for the committee to consider five further proposals by the Scottish government to consent to the UK government legislating using the powers under the European Union withdrawal act in relation to a number of UK statute instrument proposals these are the EU exit regulations relating to food and feed imports materials and articles in contact with food the sprouts and seeds regulations the animal feed amendment regulations and the food additives flavourings enzymes and extraction solvents regulations now a private paper has been circulated to colleagues which you will have seen and which highlights a range of issues and points of clarification that we may wish to seek written answers to from the minister for public health sport and wellbeing who has already been to see us in relation to other regulations i hope members have the opportunity to look at these but they will see the the the essence of them are to obtain clarification on a number of areas and i wonder if colleagues have any comments on those suggested further questions we may wish to push to the Scottish government sander white thank you very much chair yes i mean read through the papers and thank you so much for providing them there's lots of issues that i want to raise but i'll stick with one at the moment which as the paper says as well as a recurring theme it's the costs uh basically who's going to bear this cost is it going to be the public purse Scottish government local authorities appear to be having to find some costs so i would be interested in finding out a wee bit more about that it seems to be four or five of the issues does come back to it's going to it's going to cost but we don't know how much i think that's that's fair and uh the advice we've had from spice and the legal department does say that we should go back suggest that we go back on costs your point about local authorities is a fair one and it may be worth adding that uh to just to confirm whether or not there are costs for local authorities in addition to those for i think there will be but it would be good to have clarification on it indeed i think we should inquire on that Keith Bryant yesterday we've been in relation to the letter that you received from the minister paragraph on 2345 and i've made this point before and it's really just to put it on the public record that it's asking what it's saying that the Scottish government has not yet had sites of the final SIs and they are not available in the public domain at the stage and this committee is being asked albeit that i think we're likely to ask for more information anyway but we've been asked to approve this as part of a legislative process the jeopardy in that i think should be pretty obvious to us all trying to agree something without having seen it when it can go off in different directions when there are competing views on whether it's category A or category B i think is a difficult situation but in general terms can i just say that i think the questions which are raised in the briefing i have no objection to those being asked to the Scottish government i think there's one or two of them i was probably less concerned about costs at least those that fall in the Scottish government because to me it's part of the nature of government but i've got no problem with the questions which says clerks have raised being asked thank you very much and certainly that general point about it in seeking that the minister confirms that we get that clarification or certainty around the final content of the SIs i think is something that we can accommodate within those the terms of those points. Alex Cole-Hamilton. I mean just to put on record i intimated to the committee previously that i and my party will be dissenting from all such regulations that come before us just on for two principal reasons firstly for the level of power it they confer on ministers without use scrutiny of parliament and in terms of my party's general resistance to all aspects of the EU withdrawal process. Thank you very much that's noted clearly we're not at the point on these regulations if members are agreed to seek further information we're not at the point on this set of coming to a final conclusion but that point is certainly noted with reference to these and to others can i say thank you to colleagues i think this seems to be general agreement we should seek the further information that has been described and we will therefore move on in a moment to a the end item three which will be in private session thank you very much