 welcome to the ninth meeting of the health and sport committee in 2016 and I would ask everyone to switch off any mobile phones sometimes they can interfere with sounds, I must certainly interfere with the proceedings of the meeting. You will notice that some of us use tablet devices ac mae'r byw yw ddechrau ddysgu cyd-drygiadau. Thea Ysgrifenedd wrth gwyl ffordd, na ddic whiskredeidiol, y prosesau yn brydol i'r cystafellau? Mae'r cystafellau i ddysgu, pam mae'r cystafelloedd, y Llywodraeth a'r cyd-ddrygiadau, gan oedd yn dod ddyddai'r eifr� peppu ond y effaith cyd-drygiadau, mae'r cystafelloedd yn brydol i'r cystafelloedd. Felly, y ddysgu yn gweithio, mae'r cystafelloedd yn brydol i'r cystafelloedd. ahowa lŵr, i wneud o'r eich briffford o'r mewn gwaith, ynglynbarcau gwahanol ar gyffredinol awr Yngrifon i Gwair Prydidol yw'r cwmbramp pan oedd o gael y cwym ni'n gweithio ni, tawd i Gwymbrun i Gwymbrun, i wneud eich cwmbramp, a wgwym ni'n gweithio i Gwymbrun. Rwy'n meddwl, Fydydd. Petydus yn rhywfawr i'w rhaid i fynd i chi i roi costiwn gwyanedd yn ysgrifesgrain. Fy fydd werdenig fel ydym ni, Felle Pryd, Ilyw Fyddolyng, ... яrdu o'r ddodd yn ei wneud i meddwl i'r dysgliad y bwrdd, i fynd i wedi hynod. Fy gallai yn ystafell. Felly, wrth gwrs, rydym gwneud hynny dydag Achim Cymru. Prydwch chi yw Richard Lyle? Thank you, convener. I thank you, convener, and the committee for holding this session, a session that I'm sure many people have been affected in regards to the Penrose inquiry. Welcome. In my questions, I've got several today, convener, if you allow me, but I think we have to have a slight look at the history. 1999, the then Scottish Executive announced the internal inquiry into contaminated blood. 2000, the Health and Community Care Committee, this committee, that was a previous name, launched its own inquiry. 2004, a sceptin fund was established. 2006, the Health and Community calls for a full public inquiry. 2007, the Scottish Government confirms it will honour a manifesto commitment to hold a public inquiry. 2008, Lord Penrose was appointed in January 2009, and the Penrose inquiry final report was published in 2015. 17 years it has taken to come to this situation. I welcome the three witnesses today, and I would like to ask them. It has been said that the Penrose inquiry didn't cover all the issues raised by the campaign. We have been given examples of medical records, but there were other aspects of disaster that were not covered. What is your view and what was not covered by the Penrose inquiry? You will be well aware that those of us who endured the six-year-long inquiry, the common term that was used was a whitewash. A six-year-long inquiry costing £12 million like that came to only one recommendation. Does that bring the whole inquiry system into dispute itself and the Inquiries Act and the Inquiries Regulations? We believe that that is an issue for a future Parliament. It is an issue that stretches right across the whole of public consideration. Recently, with the Trams inquiry, the chairman has had to alter the situation there because it has moved from being a non-judicial inquiry to a judicial inquiry in order that witnesses could be compelled. One of the aspects that we have found most troubling was the fact that, while it was a six-year-long inquiry, there was a three-year gap between the end of the public hearings and the report being published in March last year. Any reasonable person when told that a public inquiry has to be held transparently funded by the taxpayer, it is reasonable to expect that the whole of its proceedings would be transparent. I am very aware that the chairman was limited in the Inquiries Act because of what is called maximalisation that you may well be more familiar with in relation to the Chilcot inquiry. That was three years where we were left in the complete dark wondering what was happening in terms of the touring and throwing between the chairman and his team and those witnesses who may well have been subject to criticism in the first draft of the report. We simply do not know what was happening there at that point. We find that extremely frustrating, potentially time-wasting. People died during that period due to their infections. We would very much urge all parliamentarians in looking to the next session of the Scottish Parliament to consider looking at the inquiry system as a whole and making, if necessary, amendments to potentially both the Inquiries Act and the Inquiries Regulations, but that is a matter for a future date. I agree with what Bill has said and many of the things that he has said. I think that what troubles me and members of the Scottish Infected Blood Forum, which, as I have said in my documentation, represents people who were infected with hemophilia and I have put my history about a history of the background, since I feel that I have been haunting this place and the corridors of black and white tiles for many since 1999. However, I think that the issues that are concerned were the fact that many people wanted to be witnesses, wanted to give their story and they were not heard. I have actually distributed this morning for you to read it later that some of the witnesses, some of the people affected, would have liked to give their story, et cetera. I am equally concerned that the way that Penrose inquiry treated the thing. The fact is that there is nothing to mention about the missing medical records, batch numbers that people had. There is nothing in it about the fact that people like Lord David Owen and Patrick Jenkins, both health ministers and Westminster, found at documents that they had suddenly, when they got to the Department of Health, were shredded, unfortunately, by a junior member of staff. However, as I say, they were coming back to the witnesses. I think that I put in my statement that my concern was that when we raised the issue about the way that Penrose inquiry took place, only six witnesses were called from the victims. There were plenty of witnesses for doctors, scientists, the Department of Health and all the rest of it, but where were the witnesses? When the council for the victims, first and foremost, I went on record, was the fact that many people wanted to be core participants. Lord Penrose, at the end of the day, only allowed six of those to be permitted to give. The appeal was heard by Lord Penrose himself, which goes against the natural justice for a judge to hear appeal against his own decision. However, even more concerning was the fact that, when the council was saying on my behalf talking about hepatitis C, the council said that Mr Dolan had sort of dampen his hanging over his head. Lord Penrose's response was that he meant a feather duster. That is how dismissive it was, that that was seen. We could say nothing. I sat in the background, like many other people, not allowed to say anything, but the fact that that is how dismissive it was just left me, as I said elsewhere, from the very first day when Lord Penrose made his initial statement back there saying that this is funded by NHS, every pound spent is a pound away from patient care, every doctor appears to time away from the health service. There is nothing to say about what about all the people. Sitting in that audience that day, where a number of widows or widower families whose relatives have died, they did not seem to exist, as far as the inquiry is concerned. The fact that so few patients, two of the people that were heard at that hearing were heard because the legal people had taken a case under the Human Rights Act and at the quarter session insisted that they both were heard, so that really came down to just about four other people were heard. On the first day, I said that it was a whitewash, and on the last day, I said that it was a whitewash. I am concerned. I spent years and years and years going back, way back into the 80s and beforehand, trying to campaign to get some justice. Justice does not mean just the financial part, justice is getting an answer for why this happened, and that is not in the Penrose inquiry. I am going to let Mr Wright to respond to the first question, and then I will maybe take some supplementaries in and around the inquiry process as it has been raised, and then, of course, I will come back and let you allow me to make some further. Of course, I was not personally involved in the Penrose inquiry. However, what I would like to comment on is that you are talking about the lengthy time that has been taken here. I think that we have been waiting something around 30 years, but it is obviously 17 years since the inquiry process came along. For me, as a person with hepatitis C, to come with one recommendation that is so much cost, that effectively says, please go and test people and find those who are infected, that is something that hepatitis C trust have campaigned for for years, a more effective way of screening to find these people with hepatitis C. Here we are after one recommendation, almost a full year down the line, and that one recommendation still has not been implemented. Time is something that is short for people with hepatitis C. Any other members on this theme of the process and inquiry? Malcolm? I will come back to you, Richard, if you are going to develop your theme. There is something else that I want to ask about, but I will stick to this at the moment. I totally take on board what you have said and I understand your concerns about what happened in the inquiry process. In the Hemophilia Scotland submission, it goes through the different expectations, and I was quite interested in expectations 2 and 4. In expectation 2, you seem to say that the Penrose inquiry had been reasonably successful at documenting the events of the disaster. In expectation 4, you were concerned because there was no criticism or apportionment of blame. On the first point, would everybody agree with that in terms of documenting the events? Was there anything there that you thought was inaccurate or was part of your concern that certain things were omitted and not dealt with, such as the issue of medical records? In terms of what is there, your comment seems to suggest that you are quite happy with that, or is that an overstay? No, no, no, no. I am going to ask if there are any other questions on this theme about the inquiry and its outcomes. Given the time that was taken, there was a substantial body of evidence collected. Much of it was new evidence that we had not been aware of before. It was well over 100,000 documents that they secured and looked at that the inquiry team examined, as well as about 89 days of oral hearings. Obviously, they gathered a lot of facts together. Whether they were able to find some explanation for those facts was in an entirely different matter. If you read the report of the Penrose inquiry, you will find that the term could appear very regularly throughout the report. In the chairman's view, those steps could have been taken rather than should have been taken. In other words, he gathered a body of evidence on much of the story. There were considerable amounts of the story that he did not explain, such as what happened in relation to medical records. Why it was that UK civil servants attempted to render crown immunity, which is an extremely savage tool to use against anybody who wants to look into the matter. It was very clear that UK civil servants, at the time when they attempted to render crown immunity, were feeling highly insecure about their position. There was no examination of that particular issue, for example. It indicates, however, an insecurity in the Government's part. As Philip has alluded to earlier, there was no evidence taken from, for example, Dr David Owen. When the report was released, we had a retired civil servant phonus up, because he had been concerned about the manner in which the issue had been dealt with. The answer to your question is that we did not get the complete picture. However, we got a much bigger picture than we previously had. There was not a great deal of judgment exercised, I think, as the point of having put together that body of evidence. There was no set of conclusions, and there was only one single recommendation, which seems extremely odd, given the cost of the whole exercise and the time involved. Mr Dolan? I feel far more strongly about the fact that during the six years of period time, or whatever length of time it has been, or the year or so at Penrose, you listened to stuff that you did not hear from victims. How can you deal with something when the actual people affected have not been heard? Hundreds and hundreds of stories are a number of people who wanted to give evidence and were dismissed. Granted, you cannot go on forever, but the fact is that people did not get an opportunity. If, for instance, I had been given an opportunity, it would give evidence. It would have been an opportunity for the Penrose Inquiry's legal team to question me or equally for the team representing people with hepatitis C, for their team to question it, but that was not there. Some of the evidence that was given, even by the experts there, were found wanting. For instance, the expert witness, very much in the very first day that the hepatologist spoke about in the first two cases, came off a chart that said that Mr X had a reading of 100 on the score charge. The expert witness said that that is a sign that he is a heavy drinker. I had to point out to council that you do not get hepatitis C from being a heavy drinker. You get cirrhosis from being a heavy drinker. He called for next witnesses with a case of a minister, a religious minister, who in fact did not touch alcohol or anything at all. He had a score of 150, taking the score. I am using those figures. It reminds me of going back to the days of old when somebody said in doing logic, saying, all men and all dogs are hairy. All it needed was one of you to come along and produce a non-hairy dog, and the whole argument is defeated. In that case, obviously, the expert witness was giving evidence. His expert views, and he is also an advisor to the scripting fund, his credibility was questionable. My whole concern is about the fact of hearing from people. If I go to a doctor, a doctor will listen, take notes and then base a diagnosis on what they have heard or take some other action. However, that opportunity was not afforded to us, and I think that it is a waste of £12 million there. As it has been said somewhere else, that note was taken. What was in that report could have been done by somebody who was not a judge, somebody who was good at taking shorthand, and that is virtually what the report seemed to me was about someone taking notes and wasting a lot of money. I do not know why all those lawyers and everybody was at the altar there, if in fact they were not going to speak for us. Richard, do you take us on a whole? Yes, I thank you, convener, and Mr Dolen for sharing with us your experience. Sadly, it is all too often that I am hearing the same from other sufferers. I move on, convener, by asking, was it a weakness that the Penrose Inquiry did not seek to apportion blame or establish liability? Again, meeting many of the sufferers, that is one of the points that has been put to me over the years. No blame, no liability, no one was basically putting the dock, if I can use that word, for this inquiry. Can I ask the witness when we go after that? Mr Dolen, absolutely correct. There was an inquiry about BSE many years ago in England and was chaired by a Scottish judge, in fact. At the end of that one, the inquiry came out and said that it blamed the chief medical officer for England and the chief civil servant for those unnamed people. In Ireland, when they had an inquiry, the two senior people from the blood transfusion were named. I think that you are absolutely correct that somebody should have done this in proportion blame, because it was not the victim's fault. They went to hospital caring hemophilia, but a lot of our members, and I think that two thirds of the numbers involved, are people who have blood transfusions. They went to the hospital looking to be cared for, and they came out suddenly finding that they had a life-threatening condition. I think that there was an opportunity, and somebody should have been proportioned. I think that it goes back and whether it is doctors or not. When we were taking information getting Mr Chisholm, when he was the health minister, it allowed for people to get their medical records. People started foring me up and saying that I have my medical records, but the batch numbers are missing. I thought that, well, maybe that is a bad administration at hospital. However, given that I was dealing with people in all five hospitals in Scotland, dealing with hemophilia, the same story was coming from that. It was not just a consultant somewhere. That had to come from somewhere in central government that that information was not around. The finger is not necessarily just a consultant, because most of us, as people with hemophilia or people who have hepatitis, have great respect and got on well with doctors. We spent a lot of time in their company, etc. I think that that had to be a decision made in some mysterious place in wherever it was. Mr Wright? The question simply illustrates the shortcomings in the inquiry system that I have alluded to earlier. If we look at a number of inquiries, I understand that the former First Minister has recently commented on this in relation to the Chilcot inquiry, where there may well be indications of seeking to avoid apportioning blame. Similarly, with the Taylor inquiry in Hillsborough, we really have to look at what we want out of the inquiry system. Sadly, I would agree that where blame should be apportioned, perhaps it should. However, if we are going to maintain an inquiry system where we do that, we have to expect that witnesses may well adopt defensive rather than reflective positions in giving evidence, which means that we are in a very adversarial position in conducting an inquiry. It depends on what you want an inquiry to achieve. Do you want to learn lessons? Do you want to apportion blame? Do you want to learn and improve current practice? Unfortunately, one of the difficulties that we have had in the case of this particular inquiry was that it was held so much later than the damage that was initially done that many of the witnesses had passed away. I am not just talking about, unfortunately, our own folk. We are talking about some of the so-called expert witnesses as well. I think that we need to look very fundamentally at the inquiry system. It is an extremely valid question, but it is not simply about apportioning blame. We have to look at what we want out of the inquiry system as a whole. I noticed that Mr Chisholm raised expectations two and four. I would add that, in expectation three, the witnesses would get their day in court, Philips raised. The Penrose inquiry is increasingly being seen in the same manner that the Taylor inquiry was seen in Hillsborough. Families were dismissed in the case of the Hillsborough inquiry. Years on, finally, we had a panel that was set up in Liverpool, where, finally, families were given the opportunity to relate their stories and to be able to express their concerns. That has led to an altogether different outcome to that that there was to Taylor. I see a lot of parallels between what has happened with Penrose and what has happened with the Taylor inquiry, which has now been pretty much recognised as a highly controversial outcome. All I would add is that, in future, we need to look at the purposes of an inquiry. I think that the position that was adopted by Lord Penrose as chairman was very defensive of so-called suffering victims. Some of us would have been prepared to stand up and be counted, to give our names. That did not happen. The 13 people who did appear as witnesses, apart from the fatal accident victims, were all given pseudonyms. If I had been one of those individuals, I would have been quite prepared, personally, to stand up and be counted, just as the expert witnesses were. It was very much a them in us that there were professional opinions who were exposed to taking the oath and giving evidence. The evidence that patients were given was somewhat dismissive. References have been made to alcohol. A lot of assumptions were made about the consumption of alcohol among those who died from hepatitis C. The only way that you can, in fact, establish how much alcohol someone is consuming is to be with that individual every moment of every day. Doctors, particularly in the west of Scotland, often on death certificates, make assumptions about alcohol. Death certificates have been improved since the disaster took place, but that is why I am saying that there are a whole number of approaches that need to be taken to looking at both the inquiry system and following the inquiry up. That is right. Do you want to add anything? Richard, if you have a final question, if you can move us on. I will give way to you, Dennis. I will give way to you, Dennis. Just a quick supplementary, convener. With regard to the death certificates, if I am hearing you correct, you are saying that the cause of death would have been something other than a hepatitis C or whatever. A person might have been thought that someone might have abused alcohol, but now, with the death certificates, we have a much better system of recording. Are you content with the new format of death certificates? Do you think that that is going to be an improvement in terms of saying that those are the facts in terms of the causal aspect of someone's death? I think that there have been some improvements made in that previously anybody could write a death certificate who was medically qualified. I think that the legacy, however, for us has been that it has caused considerable difficulties. To be honest, that is a matter that I am only aware of in a degree of detail. I think that I would have to write back to you further on that, Mr Robertson, in terms of just how we would view it. Just to follow on from the death certificate thing, I think that we will find that many deaths that were attributable to hepatitis C have been attributed to other things. In the years since hepatitis C was known about, the evidence has come out about other areas apart from the liver, which are affected. People who have died from cardiovascular disease, stroke and non-Hodgkins lymphoma where hepatitis C will not be on the death certificate. I think that the true picture of the number of deaths that are attributed to hepatitis C is a lot lower than it should be. It brings us on to the next stage, chairman, in relation to financial recognition. There is a surprising frequency of death from cerebral brain hemorrhage recorded on death certificates. At present, at stage 2, many victims died at stage 1 with respect to financial recognition, but they died of cerebral brain hemorrhage. The most famous of all, of course, was Anita Roddick, who founded the Hepatitis C Trust. It is a very common occurrence on death certificates that cerebral brain hemorrhage arises. The problem that we have is the medical input here in relation to cerebral brain hemorrhage to hepatitis C. We have the difficulty, in the case of hemophilia, that the possibility of cerebral brain hemorrhage is risen for people with bleeding disorders. Nevertheless, by having hepatitis C, it would appear that there is an increased risk of cerebral brain hemorrhage, but at the moment with respect to financial recognition that is not recognised. Some of that is reflected in evidence, of course, but it is good to get it on the record. Mr Dolan, I want to go back to your interest. I want to pick up one particular point. During the inquiry, those who are going back to the expert when they are coming in and saying, and remember, three or four doctors all close together giving evidence, were asked about a period during the 1970s-1980s about talking about hepatitis and novel estimate. All three of them said in their evidence that I do not recall, it is in my own statement here, that they do not recall. Now, it may not recall, but a few minutes later they could recall 10 years previous to that and 10 years afterwards. What I would say is that every person with a person with hemophilia or a blood transfusion will remember the day, the hour, et cetera, when they were told that it is hepatitis C and the impact that that had on them, the impact that it has on families and all the rest of it. It is not just about hepatitis. Anytime if you are told bad news, you will remember it very clearly. You may not understand what you have been told, but you will remember I have been told. I think that for that sort of statement to come in, I find it surprising. Maybe they had a loss of memory on that particular day, but I would suggest that when I was told, I know when it was, I know the day. I suppose maybe at the age I am, I remember the second world war being declared as a city in the garden, there was about three years of age at that time, but there are things that you will remember clearly. Richard, you have got a final question. I have been involved in this in the last number of years. Last year I had the opportunity to go and see the play factor 9, which was very emotional and very heart-hitting. It conveyed to me the effect that this has had on many sufferers. I must say that more than 30 years that people have suffered this, rather than the years that I mentioned earlier. Last night in social media, many people were discussing this committee meeting today. One of the points that I came out and I promised on the media that I would ask, and I may be jumping ahead, I apologise if I am. I have got a settlement for financial support and Billwright spoke on it. People want closure on this now. I am not going to put a figure on people's lives. I know that we all are members of the contaminated blood financial support review group, which has been established. I have to pay compliment to the cabinet secretary for what she has done in the past number of months and also to the apology that the Scottish Government, the First Minister and the cabinet secretary gave to all sufferers in what the pen knows about. However, the group is looking at recommendations. I do not want anyone to give me figures, but basically what closure many people out there want closure now. We have had the inquiry. A lot of people called it a whitewash. A lot of people now say that enough is enough. We have suffered this for the past 30 or 17 years. We have now come to recognise that we have a legitimate claim. What in your view would be—I do not want to create other members' questions—a closure on what people have suffered in the past number of years? A rightful closure is a good start. What would be a rightful closure? That is a very difficult question. For every individual involved, it is going to be something different. Some people, frankly, do not have money that matters. For many people, the First Minister's apology, the health minister's apology and the Scottish National Blood Transfusion Services apology meant a great deal. Over the past year, we have made considerable progress. In the case of hemophilia, there has been considerable progress made as well, because we now have a national hemophilia committee set up in order to avoid the circumstances that happened 30 odd years ago where patient groups will be much more closely involved in the way that hemophilia treatment and support are exercised. There have been quite a number of steps taken. The big question for many people is that of financial recognition. I use that term quite advisedly, because it was a term that was drawn in during the course of the production of the report by a legal official from the Government. It is a term that we can live with. If we go down the route of legal compensation, the story will continue for years and years and years much further. We do not want that. We want closure or as near to closure as possible to try and get money to people as soon as possible. Every different individual will have different ideas on what the correct amount of money is. If we go down the route of looking at each individual and treating their case on a case-by-case basis, then, as in Ireland, we would wait another 10 years. Ten years on in Ireland, there are still cases being argued over in the courts. We do not want that. We want to get money to people tomorrow. We are aware of circumstances where there are families where it is likely that the infected partner will die and they want to be able to pass away in the knowledge that they are widows. I must impress upon you the need for urgency that their widows are properly looked after because the widows in this story have been treated shoddily, really, really shoddily. I have spent a great deal of time sitting. I spent five and a half hours with one widow recently in terms of how shoddily the current arrangements are. I must impress upon you in the strongest possible terms not to obstruct this process but to ensure that those who have lost loved ones do not have to wait another 17 years to get justice. I want to impress upon you in the strongest possible terms that we need Government to move on this to make an early announcement so that the circumstances in which those people who are in fear for their partner's lives, at least know that, when they pass on, there will be some sound financial support for the people that will be left behind. I am sorry, but it is a matter that is very deep to my heart. I think that the recommendations that the review group has made will go a long way to beginning there and for a lot of people. One of the big things for me was this silly stage one, stage two, and the number of people at stage one who have died who are unable to work because of these other medical issues that are obviously now the evidence is there, they are caused by their hepatitis C, it is unrecognised, they get no help. We want to pursue that and widening the criteria for the script in stage two where more people will be able to access an income and all the other, if you could call them, benefits of having their health impact recognised by the hepatitis C. Even small things like the stigma, at the public meeting I went up to in Perth, I spoke to one gentleman and he was in his third generation of keeping a secret. He had hepatitis C from a blood transfusion, him and his wife had kept it from their son while he was growing up. The son had now grown up and knew all about what happened to his father, but now the son had a son and the family were back to the situation once again trying to keep this horrendous secret and the stigma away from their third generation. Bill is right to say that some people don't necessarily want some money, they want an explanation why that happened and that we have said all along as a case. Where I disagree and you have my note of dissent from the Scottish Infective Blood Forum, which represent probably two thirds of the people who have hepatitis C according to Rod Penrose's figures, whether you believe in statistics at all, but the fact is that the concern that is around was the fact that in stage 1 and stage 2 which we believe should not exist, it sort of splits people up, but in terms of a lot of people who are in stage 1 are very, very ill. In the book, the document that I have said to you put around earlier, you will read at your leisure tomorrow or later on the stories of people and it talks about the different types of experiences people have. A one here which maybe depicts a lady about her story, what the impact it had on her husband who had hemophilia died and the impact it has had on the total fact of her family. Just the basic things they are saying, you know, if he'd been alive he would have walked my daughter down Isle last year. Those are the sort of things which is a wider part of the family. I hope that some of you tomorrow night will be able to come to the event that we're holding in this building tomorrow night and where stories will be told. We'll be told on a video film where people have appeared telling their own story about this. There's also one which came from the scoping exercise, people telling what actually happened to them. I'm one of those people who don't get emotive etc, but I feel as much of it as anything else, but the fact that you differentiate between one person because they happen to be deemed to be in stage 1 and somebody who's in stage 2, I have nothing against people getting increased money etc in stage 2, but equally it is the difference between one and another where some of the circumstances are absolutely appear to be the same, they still have the same family, they can't talk about it and over is it. Those are important I think there. The fact that the review group did come out with a particular view and that's why we put in the dissenting, but equally why we put in the commentary because following the review group a report came out was published, but only recently I discovered that within that report the 10 page commentary that we put in with views of people going through a whole of the meetings that took place had been left out and I understand the reason that it was left out, that some parties who were involved with the review group had wanted it silenced, didn't want it to be published, it seemed to be censored. I don't know who those parties were, but I do know that some people on that group because anemphatism was put on stage 2 to get money and we have nothing against that financially, but the fact is that the majority of people are in stage 1 and those who are seeking financially will get nothing, it doesn't matter. We get into these situations where you expect the committee all of the time, in fact we'll be speaking in some things this week where we'll express a view of the majority and a view of the minority and in reading some of the background papers to this there are certain differences with a minority and a majority. I've heard that reflected today, I'm just trying to develop this theme so I'll give you an opportunity to come in, but we spoke about closure. For some people, without apportioning that blame and real understanding of what happened, there can be no closure. For some people, the financial arrangements generous or ungenerous that will be apportioned will not satisfy everyone. There will be issues about, certainly, the points that I made well in regard to the limitations of who that any support would be provided to, not simply to HEPC, but some of the other conditions that you mentioned earlier, which is still something that's to be argued in one as an observation and not being an expert. I wonder, I suppose that the follow-up question after all of that context is on what issues do we believe that we can get a majority of opinion from those who have been involved in this for far too long? Do they currently agree? We know that financial support and the financial arrangements are a priority at this stage. Everybody has agreed with that. We can get closure on that. How would we get closure on the financial matters before we move to some of those other issues that are still outstanding? Yes, Mr Dolan? I agree with you there. I think that your opening remarks saying at all those committees there are agreements and disagreements, but at least in the Scottish Parliament the openness that Rosewood has sent, their views are at least recorded, which has not been recorded in the report that came from the review group, even though we put in. In terms of closure, some people certainly do not want anything, but the fact is that the gap between what financial arrangements have been suggested for those in stage 1 and those in stage 2 is, I am not saying that it is ideal, but it is absolutely a width and a distance between what people get and what people are going to die. It was suggested to me recently that there is new treatment out for hepatitis C. Some folk will say that, because of that, they are cleared, but we know that from the Ebola case of a nurse in Lanarkshire that was told that she was cleared, and we know from talking to other people that, yes, there is new drugs, it is cleared, but it still is resident somewhere within the body, so it is not clear, but we certainly got the issue that those people who are in stage 2 or stage 1, stage 1 people, all that is being offered, was in 2004, Mr Chisholm, when he was the health secretary in this Parliament, he put me into an excracial payment, which he and I were on the opposite side of the table to disagree on this, but he made an excracial payment, which I was glad it forced a Westminster Government to follow suit, so at least it would do things right here, but we have argued that the Lord Ross recommended £50,000 back in 2003, and that was never reached. What the recommendation in stage 1 at the moment with his review group is that an extra 30,000 be given to people in stage 1 who got 20,000 some in 2002, 2003 or around that period 10 years ago, that was 30,000, would only bring them up to what Lord Ross recommended in 2003, and Lord Ross recommended that that would be for the fact that people have been harmed by the fact of hepatitis C, so the recommendation really, as coming through from a review group, is only to go what was recommended some 10 plus years ago, while it is good to know that people in stage 2 are going to get considerably more money. It may not help you enough, but it will get considerably more money, but the fact is that if you take two people sitting together, one is in stage 1, one is in stage 2, and they get some financial thing, at least it helps them to get on with their life in that sense, the other person gets nothing and they're destroyed. People don't know how they're going to bury their loved one whenever they die because they don't have any money. It's a complex set of arrangements, isn't it, as well, which is another thing in terms of the background paper. Mr Wright, do you have a comment on that, and then I'll go to... Stage 1, stage 2 breakdown is a difficulty, because we couldn't start when the review group started its work. It wasn't starting with a blank sheet. We were, in effect, in terms of the breakdown between stage 1 and stage 2, having to operate on the basis of what was originally the Ross recommendation to you, Mr Chisholm, when you were minister. Philip was actually on the Ross committee that made that recommendation of the breakdown between stage 1 and stage 2. Of course, medical understanding has moved on since then, and Petra is better positioned than I to talk about the extra hepatic effects. However, we didn't have the advantage of medical representation on the financial review group. If there's any weakness in the review that we conducted, I'd suggest that it was possibly that. However, nevertheless, we do not want to go back to a blank sheet here, because we think that it's better for everyone to have at least £30,000 in their bank account as a result of this review, which would happen if the recommendations are followed. I should also make the point that £30,000 is by no means a ceiling under the proposals as recommended. If you look at recommendation 4, the proposal for support and assistance grants is proposed to increase the amount of flexibility in terms of, for example, funeral costs or whatever that can be drawn upon, whether you are stage 1, stage 2 or widows or whatever. It's worth recognising what hasn't been mentioned so far. There were 60 people who were infected with HIV by this disaster. They were both infected with HIV and hepatitis C. 40 of those died. That particular element of this has somewhat forgotten in this whole story, in that they had a double whammy. We're particularly keen that the HIV provisions are brought up to Scotland. At present, the administration of all those schemes is, of course, down south. The McFarlane Trust has no Scottish representation whatsoever. We believe that the whole thing needs to be administered from within Scotland. If HIV is included in that, we're able to do that. The reason that the Hepatitis C Trust supported the report was that we built in some flexibility if you look at the fourth bill at bullet point of proposal 5, further work, that thresholds for stage 1 and stage 2 of the Skipton Fund should be subject to a specific evidence-based review. Now, that could encompass many of the concerns that Philip is raising here in terms of these extra-hypatic effects. I think that Petra, you're probably better qualified than I am, but we would want to draw in medical representation to that. There are considerations such as fatigue, which is an extremely common theme throughout those affected with hepatitis C, but it's very difficult to provide evidence on, because it's self-reported rather than through a blood sample or whatever. We need to find a way through that in terms of those who, for example, no longer—who are in stage 1—have no longer been able to work because of the impacts of fatigue, but the evidence states that they simply don't have the energy to go to work every day. I'm going to relate that back to my first involvement with hepatitis C when I was first diagnosed, because my biggest symptom was that my memory seemed to have disappeared. I'm going back to 2006, now one of the first conferences that I attended, and we were shown some new magnetic resonance image in scans of brains of people with hepatitis C, and you could see where the brain damage had occurred. Hepatitis C at that time was unknown to cross the brain blood barrier. It had found hepatitis C active virus within the brain on postmortem. One of the first things I learned about it was that it was a systemic disease that affects multi-organs around the body. Initially, the liver cirrhosis and the liver damage was the first thing that was recognised. That seems to have taken precedence throughout. Maybe hepatitis C is an incorrect name for it because it relates to the liver too much. That was my first involvement, because to find that I wasn't going mad or had early Alzheimer's, it was because of hepatitis C that my memory had escaped me. It was very disturbing for me not to be able to remember things. The other thing that's gone on for a long time, as Bill mentioned, was demonetorodic passing, not long after she was diagnosed with a cerebral hemorrhage. In the last sort of year or so, there's lots of evidence coming out now about the various things that are now attributed or linked to hepatitis C, cardiovascular disease, lymphoma, stroke, diabetes, all things that we're concerned about here in Scotland anyway. The other things are that the kidneys can be affected. Natalie Cole had a kidney transplant as a result of her hepatitis C. All that range of things seems to be largely ignored in some respects by the medical profession. I've heard of people going along to their doctor after being successfully cured of their hepatitis C infection, but those things still go on. One lady said that a GP had said that her hepatitis C is cured, but she's still suffering from those other things. The latest framework published by the Scottish Government, the latest sexual health and blood born virus framework for the next five years, the priority areas that they have listed in terms of being treated for hepatitis C, getting access to these new drugs. It's patients with F3, F4 hepatic fibrosis and Ben and or patients with severe extra hepatic manifestations of hepatitis C and also patients with significant psychosocial morbidity as a consequence of hepatitis C. Already we're seeing some recognition within the medical profession of the other aspects and the other health issues that hepatitis C can bring. I really feel that once we reconvene the group and can take a deeper look at these issues, it will help not only the people in this disaster but also the thousands of others out there who got hepatitis C possibly by other means. We could go a long way to helping these people's lives. Thanks for that. I've got a couple of committee members, Malcolm and Rhoda, if anyone else. Dennis is wanting in as well. Malcolm. I just wanted to ask Philip Dolan so I completely understand his position. Is your main concern about the recommendation about the £50,000 level or have you still got issues about whether there should be a stage 1 and stage 2? Is it main of the initial? I think that the people were saying that there is a difference between stage 1 and stage 2. Many of the members don't feel that there should be a stage 1 and stage 2. There may be some way of putting tears of where a payment comes in. I think that the level of payment that people will be offered is seen as to reality because many people started on this road feel at the end of all of this thing and Penrose and that they are no worse than what they would have been if in 2004 the recommendation of Ross had been implemented. A majority of people would only ever get to what Lord Ross recommended. I know that there were difficulties in your time and difficulties elsewhere, but I think that a lot of people want some support for people who have been affected. Setting up a Scottish Infected Blood Forum created an opportunity for the first time for people who had blood transfusions who had hepatitis C. Hemophilia had been around for a long time and therefore, as an organisation, people knew about hepatitis and got there. People who got infected with a blood transfusion felt stigmatised and felt that they could not talk to anybody about it. One of her members who would have guidance teaching at Wake School said that she was first diagnosed as having ME, then she was told that she had hepatitis C. She felt unable to go and talk to her fellow teachers because they assumed that she was a drug addict. That is where her assumption comes in. There are lots and lots of that type of thing there. Perhaps to answer a question welcome, I would think that, while a number of people are not interested in the money, the majority of people are not interested in the money and my experience in when we are going through a campaign, etc, being told that I remember a doctor I used to sit in tribunals with saying that doctors are good people who do not make mistakes, etc. When Mr Chisholm announced the X-grasio payment, seven o'clock that night, I got a phone call from the same doctor saying, how does my cousin get money? No one had ever worked this out. His cousin probably would spend £20,000 in the casino in one night. However, when the X-grasio payment was made, we did not differentiate between the rich and the poor. People got what a recognition in terms of it. I think that the biggest thing is a gulf between stage 1 and stage 2. If some sort of way could be done to at least take away from having stage 1 and stage 2 and have some system where people could get financial aid, I am sure that a lot of people who are currently in stage 2 recognise that difficulties are being experienced in people who have not, by chance, had a doctor come down and say that they are now in stage 2. Having all the effects that Petra has spoken about, they are suffering from a whole range of illnesses, etc., which are probably associated with having hepatitis, but they just have not developed a cirrhosis to the level. We have members in stage 1 and stage 2 in what is called stage 0. Stage 0 is where people have applied to the script and fund for £20,000 funding and have been refused because their medical records were lost. In other words, any record of them having received a blood transfusion, because we actually have members who have had blood transfusions as well. I think that coming down to the point here and going back to what I said earlier about where we are in terms of what we inherited, we looked at the Canadian system, which has six stages. I think that my colleague, Dan Farthing, our chief executive, and I did, have some informal discussions with Government officials about perhaps looking at stage 1A or whatever in order to bridge that gulf. However, our concern here is that if we start to rewrite those proposals that have come from that group, we will be a year on, no further forward. There will be further deaths. There will be people who will not have received £30,000 perhaps before the election that they might do. We do not know when we are going to get that £30,000 to people. We think that it is far better that we get that money in. We have access to the new support and grant fund, which is going to take some time to establish. Petra mentioned here that there is further work to be done. That is by no means the end of the story, but there is some of that in this report that can be acted upon immediately. That is my concern. I want to get some money into people's bank accounts. There is an opportunity here to do that. It is very important to put that into context in terms of the situation within the wider UK. You may well be aware that the UK Government announced a further £100 million to be dedicated towards that particular issue for the rest of the UK. We have had a brief look at what is being proposed under the consultation. It appears that that will include the cost of treatment of the new drugs—£60,000 per person. That takes a very large chunk of that £100 million out. Last year, on 25 March, on the day that the Penrose report came out, the Prime Minister announced a further £25 million, which, on the face of it, appeared pretty generous, as an interim payment. I wrote to him and asked him how that was to be distributed and how he would reach the £25 million figure. I never received a response. I say that in context because, on 25 March last year, Jackson Carlaw, the spokesman for the Conservative, said that he was personally rather proud of how Scotland dealt with that issue, in that we set up a group of people who worked with the Government. We argued that the discussions were very tense at times. There were tense between us at times, but we came up with the report. I commend to you the report that we need to get ahead and enact as much of it as we possibly can. The report acknowledges the further work to be done on the issues that are raised with regard to stage 1. We do not shy away from that. As I said, we have people with stage 1. I have spent time with stage 1 widow and seen how unjust the situation has been. There are hits that we can make here at an early date. I think that we need to get ahead and, I must impress upon you, get ahead and take what action we can. When we engage the medical profession and academics, for example, in exploring those other issues about fatigue and mental health problems that have arisen as a consequence, which I am sure Petra could comment on. I was going to bring it back to what would give a good conclusion to find the people who are still to be found. The hepatitis C trust are on the short-life working group. Although we are happy enough, we are getting a bit impatient about it all. For instance, the estimates that there are only 200 people in Scotland who acquired hepatitis C through a blood transfusion pre-1991 are still to be found. I would dispute that number as being extremely low. If we think of recent history, there was an infection in the Royal Infirmary in Edinburgh and the A&E department. There was an infection in an impatient in Lanarkshire a couple of years ago. We have had the rogue dentist in Ayrshire. There have been many opportunities in the past other than blood transfusion directly where people may have picked up their infections through NHS treatment. By introducing some degree of screening across the country, whether it be birth cohorts screening, like they do in America, everyone of a certain age group gets requested to go and have a hepatitis C test. We would help a lot, but we do not think that spending a lot of time trying to figure out how to find only 200 people will prove to be cost effective and find the people that we need to find. We need to look at the whole community—I hope that you do not mind—of people out there who have hepatitis C and do not know it. Can I add to what Professor Sead, on that working group, said at the set-up at Look Back under Professor Goldberg? Interestingly enough, it is met once. I keep trying to find out when it is going to meet again, but I understand that the difficulty has been that people who are required to be on it for either doctors from a blood transfusion service, etc., are never available. Therefore, the group had been appointed a way back at the same time as the review group, both set-up at the same time, but a year on, we are no further forward. It is quite interesting to say that. I always come to meetings like this when I carry various documents. I have a letter back, I think, about the 80s, etc., from the senior persons in the blood transfusion and the Scottish office, writing saying that we have to have a look back, but that letter is there. It seems to have not got anywhere since in those 30 odd years, etc. We could see it later if you want, but that is just to go on what Professor was saying. You mentioned that there was a figure of a 200 still not identified. Are you aware how they would identify a 200? Why did they come up with a nice round number of that? I have no idea at all where those numbers come from. It just seems like a ridiculous number. Do you collectively do any work about estimating what that number was more likely to be? No, not in particular, but what I am referring to is that there are a lot of people who applied to Skipton who were refused because they did not have enough evidence. There are also a lot of people out there who are recorded by Health Protection Scotland and the criteria for transmission routes do not know. I just feel that sometimes we can be too narrow in our search criteria and that it would be more cost effective to cast a wider net and the hope of helping more people. That always amuses some people because it is always related to watching casual care whole-by-city. When you go in there, people get brought into A and E and it is UFTs, LFTs, whatever else. Why not just tag it on? Why make it different? Why make it a normal part of healthcare to test for it? The majority of people out there, particularly women who have had babies, will say, I cannot have that because I have been tested for it. They will say, no, you have not. You will automatically be tested for HIV and hepatitis B, but you will not be tested for hepatitis C unless you are a known drug addict or you come from another high-risk area—I see a Pakistan or something like that. There are so many missed opportunities out there to find those people. Do we want to find them? Thank you, convener. I do not think that the witnesses are poles apart in what they want us to see today. Can I move on to another subject that is to do with tissue samples for research? That was an issue that was brought up where there are currently held tissue samples, but the people whose tissue samples they are are not aware of their samples being held and, indeed, if they are being used for medical research. I want to know your thoughts on that and how easy it would be to identify the people whose samples are being held because it seems to me that, given some of the evidence that we have had, that might be easy if they could be identified from research, which seems to be one of the concerns. How would you go about getting permission to use that on informing people of that cell? It is an interesting question. I, for 12 years, was the vice-chairman of the Research and Ethics Committee for the Primary Care Trust of Glasgow. I also have, at various times, for hemophilia, said that we want to take something for research. I stick to what the health sinky agreement was that when a sample is taken from you for research, it is for that specific particular topic at that time, but you have to go back to the person to seek their permission if you want to use that specimen, a sample, for some other reason. I recall when, way back when various researchers were done, certainly in Glasgow, in the red light district, of the street workers were being tested. When the question was cropped up, they were being tested anonymously, but there still was a question that if they had been tested there, at some time at a later date, someone would be put in for insurance, etc., and they do not mention it, they suddenly find, if they suddenly were a millionaire and they wanted some money, etc., they can no longer, they are not getting anything because insurance companies will sure find out a reason for not paying. I think that the basis is, the answer I would say is that if anybody gave us, excuse myself, if I give a specimen for something, I give it for that particular thing and I would not want it used for anything else unless I was asked that permission. It may well be, I would be quite happy to do so, but I do not think as best under the original thing of ethics was that you give agreement and sign for a particular test survey that is being done, but I would have reservations. That is a personal viewpoint and it would be the view that was being held at that time while I was involved with the ethics committee. Anyone else in response, Odo? I am a wee bit reluctant to enter into that because it is beyond my technical expertise in terms of the way that these samples are presently administered. Could you be enlarge a wee bit on an example? My understanding is that there are samples held that they could be used for research, but they are anonymised, so the excuse is that they cannot track back to who they belong to and that is going back historically. There are concerns that people living have samples that are being held and might be used for research. I suppose that they need to know if that is a case and give their informed consent of that. I can think of instances where, for example, with CJD that might be a concern. Unfortunately, the hemophilia community, as well as having been victims of hepatitis C and HIV, were informed in the 90s that there was the possibility of exposure to CJD. That was at a very discrete period of time over a couple of years, because previously CJD had only been thought the passage through beef, but it did appear that, because of the concentrates, it might have been passed through blood products. I think that there is a big ethical question in that, because in Scotland, like any western country, developed country, researchers need it. It is the medical ethics that we need to get right. I think that we need to have a look at the actual detail of that. On blood, certainly, we would say that anybody who is giving a blood sample, if it was to be used for research purposes, would have to be made well aware of what the research purposes might be for and whether or not they want to be informed of the outcome that is a general rule. I have to confess that I do not know what the exact written ethical rules in that are. Scottish Government has agreed to fund the Scottish Infected Blood Forum and the hemophilia Scotland for the next three years. Do you have a common purpose in terms of what you will be doing over the next three years, and do you expect that there may be recurring funding after that? Obviously, the money has been given. Although it was announced several months ago, the money has come into our bank this weekend, but it has not reached us. We have been soldering on my superannuation and various other people's donations, but I have a list of receipts, etc., which may go to it. However, the main purpose of the Scottish Infected Blood Forum has been to create the forum in which people came to discuss. In particular, blood transfusion people have never had an opportunity to talk to somebody else who would happen time to see. It is amazing how having this forum an opportunity to meet, discuss and share things and be supportive to each other. In the document that you have here today, you will probably find a number of people who have given their stories. We will be speaking often on television on the film tomorrow night. We have told what the advantage of having an opportunity to go to the Scottish Infected Blood Forum is. The advantage of that is that, at the moment, we publish documents and give support to people. My phone rings regularly. We are hoping to put in place a part-time worker in the same way that it stands farther than it does to the hemophilia of Scotland, but I do not know whether there is something else that you want to talk about. I am just wondering. Obviously, you have stated that it is a support forum, which is excellent in terms of providing support. I dare say that it provides appropriate information and advice. I am just wondering if there is a common aim between both organisations in working together in a common cause, in a sense, to keep their awareness there, but to look at the appropriate outcomes? The answer is yes. We are here today because we have been campaigning for the help and support to people financially and otherwise. For counselling, for instance, although there are suggestions in the review group, counselling could become available. The opportunity is also to improve on the treatment. There are new treatments around, but, again, there are treatments. It depends where you are and whether you are available to you. I know that I am wondering whether you are reluctant to people who are very wary about going on to new treatments and having lived through a lifetime of getting snake venom a way back in my early days to various cryoccipitating fact eight, which gave me a hepatitis C and products that tell me—as we mentioned earlier—that letter coming in saying, we know that you have received blood from products from somebody who has since died of valiant CJD. When I mentioned this in our household, the best thing for me to do is to get a dictionary—all the dictionaries in my house have a bookmark under the letter S, where I find sympathy. In the sense of what the whole purpose I would say is to try and get the improved treatment. At the end of the day, hopefully, one of these days will come back and somebody will find something that will cure. However, at the moment, the suggestion—you may see it in the film—is a doctor saying that the new treatment will be cured. However, as I said in the earlier day, there is now—you can never guarantee something to cure because something is lying in dormant in the back somewhere else in your body and the effect. However, we are obviously working to try and improve. We are trying to improve the life of our members and give support to families. Anyone else? Yes, please. I was just going to say in that respect the hepatitis C trust. Through our patient helpline, we have contact across anyone with hepatitis C and user services. We already run a counselling service that is funded by England and Wales for victims of the contaminated blood through Caxton or Skipton or through something like that. We have a good understanding of the needs of those people. We also do a couple of health days to try and encourage them towards doing treatment as well as explaining the advances that have been made in hepatitis C over the years. We have a set of objectives that are set out with Oscar, which overlap a great deal with those at the Scottish Infected Blood Forum. We do not name either HIV or hepatitis C in those, but, for reasons that are obvious, we have a considerable section of our membership and the population that we seek to support who were infected. There is considerable overlap in the work that we do with the Scottish Infected Blood Forum and the hepatitis C trust, who have learned a great deal from it and other organisations such as Waverly Care that deal with HIV. I think that the implication of the question is how do you get best bang for your buck in terms of the spending of public money? To a certain extent, we are potentially drawing on the same pot. We can see advantages in the Scottish Infected Blood Forum having a part-time officer, because, obviously, they would be in daily contact with our own office here in Edinburgh, as well as, obviously, Petra, who administers the hepatitis C trust in Scotland. However, from our own perspective, it is very useful that we have secured some public funding to have people working for us, but we are looking to the future in terms of trying to be more independent. Ultimately, as a charity, we do not want to be dependent on government, because, of course, at some time, at some stage in the future, we may well wish to be critical of it. There is a balance to be achieved in relation to funding of all health charities. How much is the public funding of the various bodies that we know? Deputy trust does not get anything in Scotland at all? The funding that we have been given is £25,000 for this year. Did you not get anything, Mr Wright? Are you not expecting a check in the post this weekend? We have already got it. It is in the bank, not in the post, but you are not telling us what it was. We have an arrangement that we have had £75,000 for this year. I was just to complete the question that was not anything other than that. Did you say that £75,000 can be not be up for the three years? Until what is it, April 3 or something like that? I presume that you welcomed the three years funding that has been needed. Is there any other questions from the committee, members? No other questions? Mr Dolling, if you feel that there are issues—we have written evidence, of course, and that is extensive—if you wish to mention any of that, or feel that there are issues that you expected to be asked, I wish to place on the record, please do so, take the opportunity to do that. The cabinet secretary has been delayed a wee bit, so it allows us that opportunity. In our presentation, we mentioned that on 4 March 1998, in the Westminster Parliament, there was an adjournment debate about factor 8, which is really to do with blood and getting a proper ideal blood product. It was introduced by Roseanne Cunningham at that time, supported by John Swinney and John McCallion, and it was really to point out about a young person in Scotland who had been refused the correct treatment, etc. For your benefit, if you want to read, you will see in this book on page 20, his story. He was the youngest person in Britain to, in fact, be put on treatment for hepatitis C, which did not work. He was aged eight at the time, the youngest ever person at the time. You may or may not want to read it, but I will draw attention to those. There is also a story about a person who got hepatitis C, but as a result of it being sexually transmitted by his wife who had had a blood transfusion before. Those things are always seen as rare, but they exist. For many of the people who have mentioned and not just in this, the difficulties in getting benefits are getting them stopped, going and having to get no benefit for months and months until they go through various tribunals, etc. Other ones about the stigma at school, where when people heard him and feel that that was fine, but then, when the HIV came around, they wanted him removed. In the classroom, suddenly, the head teachers, niece or somebody, would happen to be in the same class, and he was moved away so that he would not be close to them. That type of story cropped up, going over and obviously the issues. The impact of those things is half the stigma that is associated with people that we mentioned earlier. It is just to remind you that those are some of the main issues. Because you got hepatitis C, the assumption has been mentioned many times already, the fact of tiredness is of impact. The time that it takes something to be told that you have got hepatitis C and I make that mention in my early submission that, in 1991, I asked a consultant if I had hepatitis C and he told me that there was nothing to bother about. I insisted and went back, got my medical records and said that, in 1978, we knew that you had non-A, non-B, which was the forerunner of hepatitis C. Ethically, for someone to be testing someone, they should get your permission, they should also tell you and they should also inform you, because the important part is that you have to make decisions about what can be passed on to your partners, etc. Those are issues that would crop up. Are those a complaint in some places? It is very difficult to get an appointment with a hepatologist there, even though it has been mentioned. As I mentioned earlier, being regarded as a junkie or a leper, those stories come out in here. In some cases, there is a lack of professional understanding. Someone finds that you have hepatitis C without reading your case records and nurses will hand you a box of needles saying that you know what to do with them. Of course, the person does not know what to do because they had been told and this here will tell you the number of stories of people where marriage has broken up or they have lost their home because of financial things. Are those practical issues that the real thing is about? I think that the committee would agree that you are finishing on a significant note. That is not about medical titles or formulas for compensation or financial. That is about people. I think that you are finishing on that note, which the committee genuinely understands. Many of us have been involved in that journey, not like you were, but I and others. Malcolm has been mentioned. We are on that health committee. Indeed, the cabinet secretary, who is now waiting outside the door, was on that health committee when we first started this long, long journey, but it is on that note that we conclude this session that this is about people. We know from our case work as well as our committee work that we have dealt with many of our constituents who have found themselves in this very frightening situation. We have all been in a position to help where we could there. The brief is a word for Mr Wright and I would not deny Petra a final word if she wants a final quick word. The cabinet secretary is now with us and we need to proceed. I would just like to say that we are running out of time. We have spent 30 years waiting for this. I really hope that the Scottish Government will accept our recommendations from the financial review group and at least let us make some kind of forward movement towards finishing this. I would like to thank you, chairman and members, for having us here today. I am aware that some of you, after a very long period in Parliament, in the health committee or various health committees, are now retiring. Others may or may not return. I hope that those of you who are here today, having heard this story, may well return, because there is a job to be done in future parliaments in order to ensure that what is recommended here is actually seen through. I understand that you are obviously going into private session to discuss both this evidence and that from the cabinet secretary. I very much hope that you are able to support those recommendations and we can move forward in the manner that you talked about closure. That would be a big step toward that. Thank you. No, I am sorry, but we are not going into private session. We are going to take evidence now from the cabinet secretary and her colleague and you are welcome to stay in the public gallery. Thank you all for your attendance, the time that you have given, the written evidence and indeed the oral evidence that you have presented this morning. Thank you all very much. I suspend at this point and allow the next panel to take its place and for me to go a place. I now welcome the cabinet secretary and officials for the second panel. We have this morning shown a Robinson Cabinet Secretary for Health and Well-being in Sport. Welcome. Gareth Brown, acting head of health protection division Scottish Government and Professor David Holberg, health protection Scotland. Welcome to you all. Can I give the cabinet secretary an opportunity to make some opening remarks? Thanks for the opportunity to speak to the committee today about the Penrose Inquiry report. The Penrose Inquiry scrutinised the tragic past events in detail, but since the publication of the report, our focus has been on the future and trying to better support those affected. I've met many of those who have been directly affected over the years and I continue to meet with key campaigners on a regular basis. It's very clear to me that they face a multitude of physical, mental and social impacts that continue to this day and in many cases will endure for the rest of their lives. For all those affected in their families, there are clearly complex and interacting impacts on overall health, life expectancy, quality of life, mental and emotional wellbeing and the ability to work. Following the inquiry report publication, I and the First Minister apologised on behalf of the Government of Scotland and the NHS in Scotland to everyone who has had to deal with those devastating impacts. I would like to reiterate that apology here today. Expressions of sympathy and regret only go so far and there is an on-going need for direct support systems, financial and otherwise intensive support, including mental health support, if appropriate needs to be made available for those most severely affected. Lord Penrose's single recommendation was that the Scottish Government should take all reasonable steps to offer a hepatitis C test to anybody who might have been infected before 1991 by a blood transfusion and who has not already been diagnosed. We accepted that recommendation and have considered carefully how to take it forward in the context of a previous look-back exercise in 1995 and awareness raising campaigns as late as 2008. We established a short-life working group chaired by Professor David Goldberg to consider that recommendation further. That group, which involves patient representatives, is modelling the number of people who may be infected and undiagnosed and will consider what further action should be taken. Beyond the work of that group, Scotland has invested significantly in tackling hepatitis C since 2008. We recognised internationally for what we have done. Anyone who can ask to be tested at their GP practice and the chief medical officer specifically wrote to GPs to encourage testing following the publication of the inquiry report. The other major piece of work is our review of the financial support schemes. We established an independent group with a majority of patient representatives and an independent chair to provide us with recommendations on how patients in Scotland should be supported in the future. Although there was debate and some disagreement among the group members, the group concluded its work late last year and provided me with a report and recommendations. I am now considering that report and will make an announcement before the end of this parliamentary session. I am also pleased that we have been able to provide funding to both HEMophilia Scotland and the Scottish Infected Blood Forum to support their advice, advocacy and peer support services. We also funded the Scottish Infected Blood Forum to carry out a scoping exercise to investigate the support needs of those affected, which contributed to the work of the review. We have funded a pilot of additional psychological support for HEMophilia patients in Edinburgh involving adults and children. I can also confirm that a national managed clinical network has been established for inherited bleeding disorders involving patients in service decisions and driving best practice and quality improvement. We continue to ensure access to hepatitis C therapies in Scotland, despite the very high cost of the most effective therapies. We support NHS boards with around £28 million per year for sexual health and bloodborne virus services. In all those ways, we have shown our commitment to supporting those people affected by this tragedy. Considering how we respond to the recommendations from our review group, I am optimistic that I will be able to show that we want to maintain and improve that support into the future. I look forward to answering any questions. Thank you, cabinet secretary. We now move directly to questions, and the first question from Dennis Robertson. Thank you, convener. Thank you, cabinet secretary. You have heard quite a lot of the evidence, and I have no surprise to you that there is some frustration about the Penrose inquiry in itself, the length of time it has taken and only the one recommendation. In light of that, what discussions have you had with the UK Government in terms of the outcomes of Penrose? I welcome the statement that you have made this morning and the financial support that you have provided, and I obviously advise two groups. However, do you have a discussion about the outcome? If so, could you maybe share that with us? First of all, as I am sure you have heard through the evidence session, Penrose was an independent inquiry, and I accept, as I said at the time, that the outcome of Penrose did not meet the expectations of many of those affected. That is just a fact, but it was independent. It did, if nothing else, give the opportunity for testimony to be given and for people's experiences to be recorded. Clearly, the recommendation and what Penrose said in his report was as much relevant for other parts of the islands, and potentially internationally, as well as for Scotland, that we would expect all Governments to look at the Penrose inquiry and take from it any lessons for their own systems. In terms of what happened beyond Penrose, we have had probably the most discussions that we have had with the UK Government have been around the financial provisions. You will be aware that the UK Government has just recently made an announcement about the review of their systems. What we have been clear about is that the biggest priority for us is to try to get a better financial set of arrangements into the hands of those who need it most as quickly as possible. There are some practical issues to be addressed. The systems that deliver the current financial provisions are UK systems, in the main, the Skipton and Caxton funds. The UK Government has signalled that it wants to change those systems anyway, and we want to get our own Scottish systems up and running. In the meantime, we will require a delivery mechanism for any enhanced financial arrangements. Obviously, we have yet to announce the acceptance of those recommendations, but we would need to have some interim arrangements to be able to get the money into the hands of people as quickly as possible while we set up our own arrangements. However, we have been having a very good dialogue with ministerial level and official level. I was disappointed about the winter fuel payments. I thought that that could have been a quick way of getting additional resources into the hands of people who feel the cold in winter because of their conditions, but it required all four nations to agree to that. I have expressed my disappointment directly to the UK Government that we could not agree to that. In terms of the financial settlement and the discussions that our Deputy First Minister is having with the UK Government, do you anticipate that it will have any impact in terms of aspects being devolved? There are a number of issues here. The arrangements that we would set up, any enhanced arrangements that we accept those recommendations, would be required to be funded here in Scotland, and we do not have an issue with that. The one area in which we are in discussion is the area of support for people who were infected with HIV because those schemes predated devolution are set up and funded on a UK basis through the Treasury. We would be keen to bring all those arrangements into one system in Scotland, but we would obviously want to ensure that the resources and some of the infrastructure costs are disaggregated and that we get our fair share of that, as would Wales and Northern Ireland. There are quite a few issues to be resolved. My main priority is to try and get something in place, even on an interim basis, to get the payments out to people as quickly as possible. I think that that is very welcome news, cabinet secretary, and I am sure that those who are affected will be pleased to hear that announcement. Finally, convener, we have also heard the impact that AHEPSY and other bloodborne conditions have on people's wellbeing. Have we made any representation at all to DWP on behalf of people with those conditions—maybe AHEPSY or hemophilia—in terms of the welfare reforms that are going through at the moment? Have we made any conversation with DWP to recognise the impact in terms of work and financial recompense in a sense? What we have said very clearly is that if we accept the recommendations and we have an enhanced set of financial arrangements here in Scotland, whether that is the lump sum or the additional annual payments, none of that should be affected by benefits that people are already entitled to or become entitled to, or that they should not be taxed or not under the current arrangements. We do not see why that should change for any enhanced arrangements here in Scotland, so we are still under discussion with the UK Government, the DWP, about that. Gareth, do you want to— Absolutely. The current recipients' payments received are not subject to tax and it has no impact on benefits. There was a very clear message in the process of the financial review group that, from those who receive payments, that should continue to be the case. As the cabinet secretary said, that is what we want. In the discussions that we will have with the UK Government about setting up new schemes in Scotland and, indeed, putting in place an interim arrangement to cover the time when we need to set up Scottish schemes, we would absolutely want that practice to continue that benefits are not affected by payments under those excrashier schemes. Thank you very much, and I am sure that it is very welcome news to all those who receive payments. I welcome that you are looking at the recommendations of the review group, but there were some concerns. I think that all our previous witnesses were keen that the recommendations were taken on board and put in place as soon as possible, but there were not, maybe, the final stage. There were concerns about the Skipton 1, Skipton 2 and, indeed, Skipton 0, where people could not prove that they had contaminated blood products and therefore did not qualify for any compensation. Is there going to be work continuing into that? I mean, I think that I have mentioned before a constituent who has helped to see and is absolutely debilitated by it but does not have chronic liver disease and therefore cannot qualify for Skipton 2 for many other people in that category and, indeed, many people in the category where they cannot even start. Is this work going to continue to make sure that we pull in the greatest number of people that need compensation? Yes. I was very struck by the proposal 5 from the review group. Within that, it says very clearly that the current thresholds for stage 1 and 2 of the Skipton Fund should be the subject of a specific evidence-based review to create new criteria based on health impact rather than focusing predominantly on liver damage. That is absolutely right. It is going to take about a time to do that. That is why we are trying to do that in stages. First of all, the review group is clear that it wants, in its recommendation, to get money to people as quickly as possible to those most affected and in most need. In my mind, should we accept the recommendations, that should happen. While we get that done, we should be looking at getting on with the relationship between stage 1 and 2. There are international comparisons. If you look at Canada, I think that they have six different stages. There is not a stage 1 and stage 2 with the diverse differences between them and nothing in between, whereas it is fair to stay within stage 1. We recognise that there are different health needs within stage 1, and that the system at the moment does not really recognise that. In short answer to your question, yes, and we see that as an important recommendation that has been made to us. Can I ask about those that do not qualify at all, because their medical records are maybe incomplete or proper records have not been kept in the first place? Yes, that was an issue that was raised with us during the financial review. There are a couple of comments to make. One is that our understanding at the moment is that the schemes that currently exist do not require medical records. They adopt a low threshold of doubt, and they will rely on, for example, if a treating clinician thinks that it is reasonable to assume that they were infected by NHS. It is not an absolute requirement that medical records are required. We know that there are some people who receive payments without medical records, but clearly there is a sense there among the community that some people are being refused without good basis. I think that what the core of the issue is is actually about how the current schemes engage with the people that they make payments to. There was a real sense coming through that decisions are made in a locked room and the appeals mechanism is not very good, and it does not communicate very well the reasons or give people an opportunity to state their case. One of the things that the cabinet secretary will be reflecting on in line with the recommendations is that when we set up schemes in Scotland, we want them to be much more open, much more transparent. There will always be decisions made. I am sure that people are not entirely happy with what is important, but what is important is that those decisions are explained and communicated. It is a clear appeals process with a different set of people to make a second decision. That is how we would hope to set up the schemes going forward. I think that the direction of travel is what that community would want. We heard that in evidence earlier today, we need to get to that point of financial help for people. I have heard from the cabinet secretary that there will be enhanced arrangements around that. Could you help us by describing what an enhanced arrangement means? Essentially, we have a decision to make about accepting the recommendations of the review group. If we accept the recommendations of the review group, what they recommended would be the enhanced arrangements. However, the complexity of that is what Gareth was describing about having a Scottish system. It will take a bit longer to establish, and we do not want people to have to wait until we get a Scottish system up and running. Meanwhile, we are talking to folks out of the border about how we could have some interim arrangements through the existing schemes to get payments. Before I announce what I am going to do, I want to be in a clearer position about the delivery mechanism of that and when we will be able to deliver it. You will appreciate that we are in some detailed discussions with the UK Government and those who run the schemes south to ensure that we are able to not just say that we are going to do something but have the delivery mechanism and a time frame of being able to get the money into people's hands. I want all that to be clear before I announce our decision. Obviously, I have said that we will absolutely do that before part of it. You say that an interim basis has been a part payment or something. I would say that the ideal would be that we would accept the recommendations and the levels of payment as recommended through the review group. I would just say that it is not about those payments reducing in any way. Those payments could be made. It is just how they are made by what means and through which scheme. At the moment, they are most likely to have to be paid through the existing Skepton and Caxton scheme because we do not have a Scottish scheme established and it is going to take time to do that. It is more about the technical side of how we get it because they hold all the data and information about people who do not hold that information. Therefore, it is going to take time for all of that to be passed over to a Scottish scheme. Ideally, I want to get the additional resources into the hands of people as quickly as possible. A Scottish team would be a Scottish setup after the financial arrangements have been settled and would deal with further actions? I would imagine that it would be setting up the Scottish system while additional payments are already being made through the existing schemes. The UK Government is reviewing the schemes as it is. It wants a different set of schemes anyway, so it is all going to be changed. It is going to take time for us to get the Scottish end of that sorted out. Meanwhile, I want to use the existing schemes if possible to get the payments to people. We are in dialogue with the existing schemes about that. How would you get an interim payment? Who would be entitled in Scotland to an interim payment by the fact that they live here? The fact that they were contaminated here? Are they living in Canada or are they now living in England? The Skipton and Caxton funds already pay recipients in Scotland and we pay into those schemes with the people. We know who they are. Essentially, the data information is held by Skipton and Caxton. We pay into those schemes so that Scottish recipients get the existing payments. Those people are already identified. I guess where we might get into is if new people are identified. The new people could be identified tomorrow and they could go on to the Skipton and Caxton schemes. However, if we get a new set of Scottish arrangements in place, then clearly any new people could go directly on to that once it is established. However, most people are known about already and they are already receiving payments. It is just that those payments are inadequate. That is why we set up the review group to look at that. If we know them, is it just getting money from the UK pot of money to get agreement to do that to pay them? We know where they are. What is stopping us from giving them an interim payment before the election? A couple of things. First of all, we already pay for Scottish recipients. Scotland pays into the Skipton and Caxton fund for Scottish recipients to get the money, but it is administered on a UK basis. All the data information about who they are is administered on a UK basis. What we are saying is that, as the interim measure, we would enhance the payments that we give to those UK schemes so that Scottish recipients would get a higher level of payment in line with the review recommendations, but eventually what we want to do is to set up our own Scottish scheme to pay people. It is not about the UK Government paying anything, it is about us being able to use those existing schemes to pay more money out to folk in Scotland. Do we not expect something out of the announcements of the UK funding of all of this? We already pay for people in Scotland to receive money, apart from the HIV schemes, which are treasury funded. That is the only scheme that is paid on a different basis. The other schemes, we already fund Scottish recipients. I am talking about the enhancement. If it goes from 20,000 to 30,000 to 50,000, is that the good way to put it? Will none of that be funded by the UK Government and its announcements? If we accept the review group recommendations, those are resources that we will pay here in Scotland. Do we not get anything from the UK Government? Other than that, if the schemes are disaggregated, there may be some infrastructure costs and administrative costs that will be shared out among Wales, Northern Ireland and Scotland and England. The HIV scheme is different. It was treasury funded, so it would be treated in a different way, and we would expect a share of that. If you look at the Department of Health review that it has put out, it makes it very clear that what it is talking about is England only for English recipients. It is talking about doing a different thing. It is taking things in a different direction than we are. That is seen where it is entitled to do that, and it is consulting on its arrangements. What we are doing here is trying to come up with the best set of arrangements for people in Scotland to meet their needs. The review group has given us the indication of what those priorities should be, but it will be for us to pay for that. It was just some evidence that we heard earlier. There was a concern from an earlier panel that the announcement of finance to support those enhancements in the new scheme included treatment costs, which was a concern to them because they felt that that was going to impact on payment. That is what the UK Government has announced in terms of the Department of Health has announced more money for treatment for people in England. We have been a bit slower to roll out their hepatitis C treatment than new drug therapies. In Scotland, we are not in that position, so we have been a lot earlier getting the new drug therapies out there. The review in England for England only has focused more of its attention on hepatitis C therapies to help people to clear the virus. We are talking about two different things here. One is around the review for England only, focused on hep C therapies in the main, with a look at some of the other arrangements. That is obviously for them to decide what they do around that. Our set of recommendations from the review group are very different, and our hep C drug payments, as I said in my opening remarks, we already put £28 million a year into the system for hep C drug treatment. New drugs are all coming online all the time, and this year we are expecting more still. We have a different set of issues to deal with. In England, there is a bit behind the curve in terms of the number of people who have not had access to those hep C drugs, and they are catching up to some degree, which is why the focus of their attention has been more on that. How was your last minute answer? I dealt with what my initial question was about, because I was just trying to work out. For me, it was a bit of deja vu, because you remember that we had to sort out the powers to do a payment and whether it would affect social security, but I am assuming that the latter issue is not really an issue anymore. We are assuming that that is all right before it will be all right. Exactly, that is our assumption as well, but we are getting it kneeled down just to make sure that it is. It sounds as if it is just the practical administration that you are dealing with. Over and above that, which I think that you have answered exhaustively about in the last 10 minutes, are there any other issues that you have to resolve in terms of the recommendation of the financial report, or is it just working out the practicalities with the UK Government? First of all, we have to say whether we accept the recommendations, but I hope that I have given you a flavour. I am very sympathetic to those recommendations. I know that they have been long debated and thought through by the review group. It is the practical arrangements of what is the mechanism of getting that money into people's hands and making sure that we have nailed down the issues around it being on the same basis of being tax-free and no impact on benefits. We want that absolutely assured. Is your intention to pull it out completely? Do you have a completely separate Scottish scheme, or would it still be a Scottish scheme sitting within the existing arrangements? The review group and those involved in the review group—actually, people that I have spoken to outside of the review group—all say the same thing, that their preference would be for a Scottish system, not just for administering money. That is a technical thing. You can do that anyway. However, as Gareth laid out, there are other issues to consider about the tone and the approach of the schemes. I have heard quite a few people feel that they have had to jump through hoops and have had quite negative experiences in accessing some of the existing UK schemes. We would want to get Scottish arrangements to be coming at it from a bit of a different perspective. They are trying to be helpful to people to maximise the support to folk. Obviously, there will still need to be systems in place, but we could make the whole tenor a lot better than perhaps the feeling is around the existing Skipton and Caxton schemes. A lot of what we had this morning was about the Penrose inquiry and the concerns that have been expressed. Is the Government looking at the whole issue of the conducting of inquiries in the light of the Penrose? Is that not really an issue that is on your radar? It is not a formal review of the inquiries act, if that is what you mean, but clearly any inquiry. We have had a few over the years where there have been issues around the length of time and cost. Consistently, we would want to learn lessons from any inquiry that is carried out, but we cannot get away from the fact that, under the inquiries act, inquiries are set up, they are independent, so to start trying to interfere in the time frame and the cost, we can give guidance. Of course, we have, in a number of inquiries, written to the chair of an inquiry saying, we hope that you will be keeping to the timescale as laid out, but ultimately we are very limited for good reasons about the independence of an inquiry in itself. It is that fine line of wanting an inquiry to get to the root of the matter, to do it in a timely fashion and within a reasonable cost, but ultimately these things are difficult to always deliver, given the independent nature of the inquiries, for good reasons. Lessons will be learned out of every inquiry. I might be treading on someone else's tools, but I am sure that the issue of the recommendation and the implementation of it is something that we would want to get about and perhaps Professor Goldberg would be able to help us with that. Thank you very much for asking me to provide evidence. We were asked to identify the extent of the challenge in relationship to the inquiry recommendation and then decide on what more could be done. This is an important consideration, because it was in the context of Scotland probably having done more than any other country in the world to tackle hepatitis C in terms of raising awareness, prevention, diagnosis, treatment and care. One has to consider all that has happened in the past, particularly over the past seven or eight years. Is there anything more that could be done? We also had to look at the impact of the publication of the Penrose inquiry, because it generated an enormous amount of publicity. You could not buy that sort of publicity. It was front-page headlines. I think that you were talking about it in Parliament, and it was also in UK Parliament as well, so there was an enormous amount of awareness raising. We took it upon ourselves to look at the impact of that publicity on HCV testing. Indeed, there was a serious impact—several hundred people, if not perhaps even getting up to the thousand mark—in the few weeks following the publication of the inquiry, particularly in the first week. We had reports of general practices being inundated and phone calls galore. I think that there was a bit of concern in the primary care setting, but it settled down. That was another dimension to all of that. A short-life working group was established. I chaired that. It is a multidisciplinary group. It has representation from a number of agencies, including Public Health England. We wanted to bring in an external view of the UK Hepatitis C Trust. We met in October—we could not meet any earlier—because we were waiting on the data surrounding the HCV testing data, which would indicate what impact the publication had. We had a very good meeting. Philip was at that meeting and made some very fine contributions to the debate. Out of that meeting we were given the task to generate some more information, not just on the estimated number of people who were infected and remain undiagnosed from the pre-1991 period, but also on the number of people at risk. We were going to do anything about that. We would be focusing our attention on that group. Since October, Scottish Blood Transfusion Service has done excellent work to estimate the size of that at-risk population, i.e. people who were transfused are still alive today. We are talking about the near 100,000 mark. I was quite surprised that the size of the population, but about 100,000 individuals are estimated to be alive and were transfused pre-1991. We do not think that many of those individuals are infected. The number 200 was mentioned earlier today. In some of the notes, we think that probably around 200 individuals who were infected are alive. Of those, the great majority have been diagnosed. That leaves us with about 20 to 40. It is not an exact science. We are doing our best to try to estimate the size of the infected population. However, if it is 20 to 40, that means that probably about 1,500 to 1,500 of that 100,000 out there who are at risk are infected. That tells you what the challenge is. Of that 100,000 or so, what proportion have already been tested, it is very difficult to tell. We just do not know. I think that the majority probably have not had a test. That said, we think that the great majority of those who are infected or the 200 who are infected and alive probably have been diagnosed. The reason for that is because 25, 30 years or even more has elapsed between the time of their infection. Today, there are loads of opportunities for them to come through health systems. People get blood tests taken, liver function tests done and, if they are raised to enzymes, they will generally get tested for various viruses, including hepatitis C, some will have developed symptoms and that in itself will have promoted testing and therefore diagnosis. There is a skew towards the diagnosis of those who are infected for those reasons, but for those who have received a blood transfusion and are at risk, generally speaking—those who are still alive, generally speaking—they will not have been tested. That is where we are. A report is in preparation, including an option appraisal in terms of what we can do and what more we can do. That report in draft form will be completed by the end of this month and circulated to the short-life working group for comment. We are meeting again in late March, early April. Following that, I hope that that will be the final meeting. I hope that there will be just a few amendments to the draft report and then the report will then be submitted to the Scottish Government for its consideration. What is the figure of 200? That figure of 200 is the estimated number of people who are infected through a blood transfusion pre-1991 and who are alive. What was it based on? It was based on a whole range of modelling work. Did the people who did come forward for testing after the report to the results of that match up with that? Looking at the data, there were about 300 or 400 individuals who came forward for whom it was indicated in case notes that they came forward because of having had a blood transfusion or because of penrose. There were others and there was no indication, but of that 400, one of the 400 turned out to be positive. We do not know if that individual actually did acquire his or her infection through a blood transfusion. Scotland and I are in a very good position in relationship to data. I am trying to estimate the size of populations, infected and unaffected populations, probably better than most other countries, but we are still at the end of the day and there is still a bit of uncertainty around some of those estimates. I was going to ask if it was just being covered or something, but I know that 200 are done. Fionnw, you do not want to follow up on that. Good morning, cabinet secretary. 30 years ago, it happened, a disaster. 17 years ago, or 17 years, we have been talking about it and now finally getting to an end result. I personally thank you, cabinet secretary, for the work that you have done in the last number of months. I thank the First Minister and you for making a public apology to the people who suffered under this. I welcome the announcement that you have just made this morning that this will be a Scottish scheme, a Scottish settlement, and that you will ensure that the announcement regarding any payout, funding or whatever—I do not want to know figures at this moment in time—will be made before the end of this Parliament, because the comment that was made by Mr Bill Wright was that it would spill over to the next Parliament and that it wanted the system to be done. Basically, it will be a Scottish scheme. You made a comment to me and a question that I put to some a few weeks ago during the budget process that payments will be made from the Scottish Government, which will not affect local health boards. Funding will not come out of local health boards. I want, again, if you could just confirm that. I know that you have answered quite a few number of questions, but can we ensure that by the middle of next month, because many people last night in social media were discussing what they wanted to see? That was a question that I promised that I would ask that we would have a financial closure or a financial system in place for people who have suffered for the last 30 years. First of all, I recognise your involvement in this issue and your campaigning over the years. I think that the people who should receive the most thanks are the campaigners out there, because I remember sitting around this table in the first Parliament and it was one of the first issues that the health committee dealt with. If it had not been for the campaigning and the fact that there was a group of people, many of whom had quite severe health needs themselves, but who got the attention of this Parliament and who made an issue that was given the focus on attention and led to Penrose, no matter what people think about the outcome of Penrose, if it had not been for the racity of the campaigners, an inquiry would not have come about. I thank all of you for that. In answer to your questions, yes, it will make an announcement before further, because people want to know. You will appreciate that we are trying to get the eyes dotted and teased crossed around some of the mechanisms, but I want to be able to answer that, yes, the new financial arrangements will be funded to the Scottish Government. Obviously, the hep C drug therapies will continue to be funded through health boards and they have targets set around how many people should be treated each year and so on and so forth. We will want to get those financial systems up and running as quickly as possible, but that requires us to get some of the practicalities sorted. We would want to do that as quickly as is absolutely possible and that is the focus of the discussions that Gareth and his team have been having with folk down in the Department of Health and those in charge of the existing schemes. I have one more question to Professor David Goldberg. You are saying about the number of 200, so prior to 1991, more than 100,000 people possibly. If I was in a car accident then and was in a coma or did not know that I had got a blood transfusion, basically how would I know that I have got hep C? The point that was made again this morning was that if I get, you know, I take the point, if we get into a doctor, discuss with me a doctor, a doctor could possibly tell us or, you know, I've had a blood test, I've had blood pressure test, et cetera, et cetera, et cetera. My wife gets very annoyed when I tell I've got one of the best blood pressures that the people have came across supposedly. I'm told. But if I get into hospital today, am I tested for hep C? You know, second A and E, that's the point. The recommendation upon those, the one recommendation was that we check that in Scotland we check that are there more people out there with the greatest respect to those people that require our help or require our assistance. So, with the greatest respect to you, Professor, how can we say that there's only 200 people? I might have been in a, you know, I wasn't in a car crash by the way, I haven't ever received a blood transfusion but how can we say that there's only 200, we suspect there's only 200 people? We honestly don't know. Well, it is an estimate and I'm not saying that only 200 people acquired HCV through blood transfusion. It was many more than that. What I'm saying is that we think that the great majority are now, have died and there are now 200 still living. All those estimates are based on a range of data available to us and assumptions are made and we do our best to provide an estimate the size of the, and there are confidence intervals around that estimate. That's a central sort of estimate. There's a low figure and a high figure. I think your point about an individual knowing whether or not he or she had a blood transfusion is a good one, actually. I think it's a really important point because not everybody would know. So, this is actually a really tricky area and certainly all the things you're just, I think, alluding to are going to be considered in this option appraisal. What to do? What more can we do in the context of the reasonable steps that Penrose is talking about? So, we do this option appraisal and then we will come up with a favoured option and that will be submitted to government. I think that the other point to make is that one of our challenges is that although we think that the numbers here are small, they're very important, very, very important, but also we've got to consider that there are probably in the region of 14,500 people in total with hepatitis C in Scotland who remain undiagnosed. Scotland's got one of the best case-finding records of any country, anywhere in the world, but still, there are maybe 35 to 40 per cent of the total infected population that remain undiagnosed. I think that Philip alluded to this earlier, that we can't just look at this group in total isolation, although Penrose is about this group. We need to also think of that undiagnosed context, the 14,500, and the very great majority of those are people who have injected drugs in the past, probably no longer inject drugs, most of them. We need to do as much as possible to try and identify them because their new therapies are very, very effective and those individuals can benefit from those therapies. It's a challenge, but, as I said, Scotland has, and will continue to do, a really good job in this front. I have one last question for you, to the cabinet secretary, and Professor Goldberg is just reminding me of it. We have closed it well. We will announce it next month. People who have died, the families who don't have their loved one there any longer, what retrospective provision are we making? Are we making any retrospective provision? I don't know the findings of the review group, so I'm asking you what if you can give us that information, or if you can, I'm quite happy to wait until next month. This is obviously a difficult area. The review group recognised the needs of widows and widowers. One of the things that was very important to them was to ensure that those widows and widowers received support. One of the recommendations was that a proportion of the support given to the person concerned would continue after their death. Obviously, that is going forward rather than being retrospective. In the current schemes, there is discretionary funding, which is available to widows and families. I think that this is one of the areas where the patient groups tell us that this is quite often difficult funding to access. One of the other recommendations in the financial review is that, in addition to future widows, if I think of it that way, when a primary recipient dies in the future, they will receive 75 per cent on-going. The group also recommended that widows of people who have died in the past should also be eligible for that 75 per cent of what their partner would have received going forward. One of the bits of work that we will have to do is—that does not exist at the moment—one of the bits of work that we will have to do is to work out how we can make that work. Some of those people will not be in contact with the schemes anymore. They may have had somebody who died 10 years ago, and it is about trying to track them down. I know that the group in particular was concerned that there might be widows out there who have moved on or who are not in contact with schemes anymore, but who would be eligible for that funding under a new Scottish scheme if those recommendations were accepted. There is absolutely something in there for the future bereave but also people who have been bereaved in the past. I think that there are a couple of supplementaries in regard to Professor Goldberg. At risk group, the Scottish Government has got a view of extending test to drug users from the 1970s, 1980s and 1990s? The way that the system works at the moment is that anybody who presents a high risk would be encouraged to have a test. Obviously, the person is ultimately their decision, but given that we want as many people as possible to get access to new therapies that, in the vast majority of cases, can clear the virus, the whole emphasis is on trying to identify who those people are, no matter what the circumstances of their infection, and to get them on to the new drug therapies. That is the whole thrust of the strategy at the moment. As more drugs are developed and, as I said earlier, there are new drugs coming on-stream this year, those drugs are very effective and very different from the therapies of the past. Again, that is an important message about the fewer side effects, so people who may have decided not to have the previous treatment are opting to have this treatment because the side effects are much less. Just in terms of the brief and the evidence, I presume that there is a regular drug test or a programme to test those who were drug users in the 1970s and 1990s. Is that group being caught at this point? Is it something that would be considered reasonable to do to extend active testing around that group of people, or has it just been mislead from the brief? There is a huge range of initiatives to promote testing among not just people who currently inject drugs but people who have injected in the past. I think that that is a very important group of people who have injected in the past in the 1970s and 1980s because they may well have more advanced liver disease. We have done some surveys of general practitioners throughout the country. They report very high rates of offering individuals who they believe have ever injected drugs in the past, offering them a test for hepatitis C. That said, there is still work to be done because 14,500 is still a large number of individuals. I have got to put it in context. Before the action plan, we had under 40 per cent of people infected and people diagnosed now at this particular point, over 60 per cent. Every year, another 2,000 individuals and additional 2,000 individuals are being diagnosed. A lot of really good work is being done. We have been scratching our heads to think, is there anything more that can be done and should be done? It is not an easy one, but within the option appraisal that we are doing, what will come out is a recommendation that does not just focus in on those who have acquired infections with blood transfusion but who also got it in other ways, got the infection in other ways. Is there an issue about the historical impact on themselves and the community then? Is it something that will be considered or not? I think that it may be that if people are not in contact with services anymore, then they are obviously harder to find, but I think that as David has laid out, that your GPs are very proactive in having that conversation with somebody about whether or not previous drug-taking behaviour may encourage them to have a test. For example, with those things, there are obviously difficult discussions that happen between clinicians and patients. David also said that the work that he is looking at just now about how we can do more to try to find those who are currently undiagnosed, no matter how they were infected, will have a benefit not just to those who were infected through blood transfusion but to that wider group of people as well. That will be something that we will obviously receive in due course from David's group once they have put their conclusions together. The other wee one that was mentioned with the extent of evidence from Peter Wright, and I think that I have got the right extent of which extra hepatic conditions should have a key component in the eligibility criteria for financial support. Do you have a view in this and given the evidence that we have had with Written and Oral this morning about not just focusing on their liver to put it in lame-age terms but about the wider impact on the individual and body and outcome? The further work proposals that the review group came up with captures that. First of all, people at stage 1 have a big variety of health issues. Some people have cleared the virus and may have very few health impacts, although they are not playing the psychological and emotional impact of having been infected at all. That is obviously recognised, but in stage 1 there will be people who have significant health needs. There is a wide variety and the review group recognised that and said that we should look at whether or not there needs to be various bands rather than just stage 1 and stage 2. The research is beginning to show that there may be a whole range of conditions that are linked to hepatitis C infection that is taking time to understand those a bit more. We need to keep on top of the evidence and what that is telling us. It is not just about the focus not just on liver damage. Further work that the review group has recommended would be part of the response that I will give, not just on the financial elements that they have recommended, but the future work that they have said should take place, which includes what you have outlined there. Does the Canadian model and the six-stage model take those wider? Yes, it does. We have had a look at that, Gareth looked at that in some detail. I think that there are international models that may be something that we would want to look at when we establish our Scottish system that is a bit more responsive to the needs of people. Rhoda Grant, on the end of the night. I will just ask a quick supplementary and then get to my substantial question. I understand from this morning's earlier session that the short-term working group that Professor Goldberg is chairing has only met once. I am just wondering how, if it is only met once, is it in a position to report? Has other work been on-going between the first meeting and what will be, I think, the last meeting when the report is drawn up? One of the actions that were generated by the group that was met in October was to generate estimates of the size of the at-risk population. Blood transfusion services were asked to do that work and they have now deliberated. They are one of two other smaller pieces of work that needed to be done. The group is now going to meet—we have struggled a little bit this month with dates and we will meet again, hopefully, for the final time in March or early April. The working group will only have met twice when it reports? I mean, we will just have to wait and see. I am hoping that the—it is a short-life working group—I am hoping that the group will come to a conclusion. Draft report will be sent in advance to the group and so it will have that in advance of the meeting. I think that I do not anticipate too much in the way of change following the meeting and I am hopeful that we can get a final report up to government just shortly after we meet. That is the position. It would be unusual to say that a group would have a lot of other work going on by other people that they have requested to work from and between meetings and then it is about analysing that and coming up with some conclusions when you have just outlined that there were other pieces of work that other organisations were asked to provide to you. Indeed. I mean, there are a number of things there. I mean, I think that we did not meet until October but we were waiting for the results of the HCV test date in relationship to the publication of the inquiries that I mentioned earlier. I think that we have just been a few months for the SNBTS work to be done and a few other bits and pieces and now we are meeting—and a report has to be written. I think that in the context of the inquiry in general that seems quite reasonable. I do not really have any concerns about that. I go on to my second question, which is about blood and tissue samples that may be held from sufferers. There is concern that those are being held and used for research. I wonder what the cabinet secretary is going to do about identifying, if that is the case, and if so, making sure that those who have blood and tissue samples being used in research are informed and that their consent is sought. Gareth, do you want to answer? It is an issue that has been raised. We are not aware, specifically, that there is a big problem, but, of course, there may be samples held historically that people do not know what they are or are tracking it down. The important thing is that there are the right sort of regulatory arrangements in place to ensure that the right consent is gathered where it is possible to do that. There is a process, I understand, of Healthcare Improvement Scotland is responsible for developing standards, assessing performance, and there is an accreditation scheme sent out of the governance arrangements for repositories of tissues and samples. There are certainly arrangements in place. I think that the challenge is trying to find historic samples, but, clearly under the current arrangements, any samples that were identified would need to be dealt with under the governance arrangements that now exist, which is all about absolutely informed consent, making sure that people have the opportunity to see what happens to their samples. We are not aware that there are banks of tissue, and we have gone through clearly a number of issues in the past about retention of organs, and we have had human tissue legislation in this area. It may have been an issue in the past because of how the NHS worked, but it certainly should not be an issue now. There are clear governance arrangements that exist, so if any samples emerge or any tissues emerge, they would be dealt with under those governance arrangements absolutely. What we will do, though, is we will make sure that Healthcare Improvement Scotland is made aware of the evidence that was presented to the committee on that, so that they can have a look at that and reassure themselves and us that all of that is now being followed as it should be. What we are talking about here is, as Gareth said, more historic samples, rather than anything not being carried out as it should be under the current legislation, which is very detailed in this committee, was very involved in establishing those samples. With samples taken historically, we would come under the new legislation, although we would assume that, if they were being held, they should not be being held without permission. We would need to come down to the termination of what the legislation says, and I do not have a view on that, but we need to check. Certainly, the governance arrangements that exist are not necessarily about legislation, but about the accreditation scheme and the processes, bodies and research organisations that should follow. I would expect that any historic samples that come to light should be considered under that sort of process. I cannot today say what the legislation says, because I am not clear on that. We need to check that. What we will do is we will check that and we will get back to you on that specific point, but we will also, as I said, make Healthcare Improvement Scotland aware of the concerns that have been raised and ask them to reassure themselves and us around those issues. To mention that there has been quite a lot of frustration expressed to us about the small number of case studies that were examined during the Penrose evidence-taking. Is there any intention to investigate the other people who were affected and who were not interviewed by Penrose? It was obviously very difficult, because it was a matter for Lord Penrose and the inquiry to decide which and how many witnesses and oral testimony that he wished to take obviously had to satisfy the terms of reference, but otherwise, there was a great deal of flexibility around that. Normally, inquiries would try to get a range of specific cases to highlight different circumstances and to be able to look at different circumstances. The independence of the inquiry really leaves it to the inquiry to determine how many that should be, but we would expect any inquiry to take a range and to make sure that there was a range of circumstances looked at. I understand the frustration. I have spoken to people directly who felt that they should have been given the opportunity to be heard in front of the inquiry. As I say, it is not for us as politicians to determine that. The inquiry had to determine that, but I understand people's frustrations. I think that it is important to put that in the record for this committee. Thank you. Is there any other questions for the committee? Cabinet Secretary, there are no other questions. I thank you and your colleagues for being with us this morning and the evidence provided. Thank you very much indeed. We now move to agenda item 3, subordinate legislation. We have four negative instruments before us today. The first one is the public bodies joint working prescribed health board function Scotland amendment regulations SSI 2016-15. There has been no motion to and all and the delegated powers and law reform committee has not made any comments on the instrument. Do we have any comments from members? No comments from members? Can I take it from that that the committee has agreed to make no recommendation? Thank you. The second instrument is the national assistance sums for personal requirements Scotland regulations 2016, SSI 2016-23. Again, there has been no motion to and all and the delegated powers and law reform committee has not made any comments on the instrument. Do we have any comments? No comments from committee members? Can I take it from that that the committee has agreed to make no recommendation? Thank you. The third instrument is the products containing meat etc. Scotland amendment regulations 2016, SSI 2016-24. There has been no motion to and all and the delegated powers and law reform committee has not made any comments on the instrument. Do any committee members wish to make a comment? No, so I take it from that that the committee has agreed to make no recommendations. Thank you. The fourth and final instrument before us this morning is the national assistance assessment of resources amendment Scotland regulations 2016, SSI 2016-25. There has been no motion to and all and the delegated powers and law reform committee has not made any comments on the instrument. Do any committee members have any comment? No comments from committee members? I take it from that that the committee has agreed to make no recommendations. That is all agreed. Our fourth item on the agenda today is consideration of petition PE 1492 by Alan Kennedy, co-location, GP practices and communities, pharmacists, which you will see from your papers. I note that the committee member has agreed and communicated with and the petition has advised that he is happy for this petition to close at this point. Of course, it would remain open to the petitioner to bring forward any other petitions around this matter if, in the fullness of a time, it transpires at the work currently under way to address the issues from the petition and do not improve services. Are there any views from the members? Can the committee agree that we close the petition? Thank you very much. As we previously agreed, we now go into private session.