 Good morning, everyone. Welcome to the 16th meeting of 2015 of the Public Petitions Committee. Can I start by reminding everyone present to close down their mobile phones and black berries completely because they do affect the sound system? This morning, we've received apologies from Anzala Malik, which I'd like to put on the record. The other agenda item is seeking the committee's agreement to take agenda items 5 and 6 on a new petition and on witness expenses in private. Does the committee agree that that's okay? Agenda item 2 is consideration of petition PE1517 by Elaine Holmes and Olive McElroy on behalf of the Scottish mesh survivors. Here is our voice campaign on mesh medical devices. Members have a note from the clerk on this petition. I'd like to welcome Neil Finlay MSP and John Scott MSP to the meeting, both of whom have an interest in this petition. We are taking evidence on the petition today in two panels. I welcome the first panel to the meeting that is Dr Leslie Wilkie, the chair of the independent review of transvaginal mesh implants. Dr Wilkie is accompanied today by Dr Rachel Wood from NHS Information Services Division, and Dr Phil Mackie from the Scottish Public Health Network. I now like to invite Dr Wilkie to make a short opening statement after which we'll move to questions. I want to thank the committee for this opportunity to discuss the interim report of the independent review of transvaginal mesh implants. We've published an interim report at this time. As we have carried out an extensive body of work, it already lets us make recommendations and actions to improve patient care in this area. We hope that it is possible to begin as soon as possible and with certain lots of provisos to put those proposed actions in place. This review into the use of transvaginal mesh surgery for stress incontinence and pelvic organ prolapse came about because of growing public concern, as you know, about the number of women experiencing serious and life-disabling complications. Women felt that their voice had not been heard as they raised concerns about the complications a number of them had suffered. Bringing a petition to this committee was a way of bringing those concerns to a wider arena. As a result of those concerns, the then Cabinet Secretary, Alex Neil, set up this independent review. He charged the review to take an objective look at all the routine and published evidence, listening and valuing concerns, both of those in the Scottish Mest Survivors Group, with serious and disabling complications and those women who had found the operation an effective solution to troubling and serious problems. Stress urinary incontinence and pelvic organ prolapse can severely impact on the physical, psychological and social wellbeing of women and can have a profound effect on the quality of their lives. The use of mesh procedures to treat those conditions began in about 2000 and 2001. They were introduced then in an effort to improve effectiveness, reduce complications and prevent repeat surgery. We were asked to review the best available research evidence statistics and both patient and expert opinion to find out the nature and scope of the problem causing concern and to establish the facts as far as it was possible concerning transvaginal mesh procedures. As well as taking objective review of both the results of the research and run off the statistical analysis, we have also examined what they did not tell us, what was missing, what the patient's stories can tell us and what the experience and knowledge of clinicians in practice can tell us. I want to say a bit about each of those strands. Chapter 3 of the report has tried to capture the experiences of women who have undergone such surgery. I know that members will have read this and it contains really quite upsetting stories. For women who have suffered serious complications, their stories describe painful and depilitating experiences. Often experienced years after their surgery and then distressingly at times not being believed when they sought help. We also heard from women of good outcomes where mesh surgery had been successful and, understandably, the review heard fewer of those as they have been less likely to come forward after a good outcome and both condition and surgery remain a personal and private experience. This chapter confirmed that some adverse outcomes experienced by women can profoundly affect their everyday lives. Where women have experienced a positive outcome, this was reported as strongly as those with anedicadoutum. However, in the absence of specific qualitative research, the largest proportion of women who have had mesh surgery have not shared their personal experiences. Chapter 4 presents an objective epidemiological review of the information from routine health data led by Dr Wood of Information Services Division. She has joined me today and I will be able to answer any questions that you have later. This is a key piece of evidence for which we are particularly lucky in Scotland, I may say, of having this available to us, which has analysed health data over a 15-year period and reveals the complex decisions that clinicians are presented with when considering the best treatment options for women. Chapter 5 presents an objective review of the research literature for which I am grateful to Dr Mackay on my right here from the Scottish Public Health Network. A review of evidence undertaken by those agencies responsible for the safety of medical devices on an international and national basis and the second peer-reviewed coherence and chromatic reviews in health technology successments. In heat, Phil has joined me today and will be able to answer any questions on this work. The conclusions of this evidence confirm that this is a complex area and that dishes in making, as often in medical practice, is a balance between benefit and risk. Our conclusions emerging from this wide evidence review also reflect a balance. We have concluded that robust clinical governance should surround treatment of these conditions and therefore management of patients should be carried out in the context of multidisciplinary team assessment. Good information is crucial to this process and another recommendation respects to that. Evidence of clinician involvement in this process, including audit activity and the reporting of adverse events, should form an important part of the formal appraisal process already in place in the NHS. We wish the Scottish Government to review the options given for adverse event capture to determine the most effective way of doing this and improving its uptake. A considerable body of work on informed consent, which was highlighted as a major concern within the literature, has already taken place, and we wish that to now be reassessed in the light of the review and extended to the other procedures. The lack of studies, research studies looking at long-term outcomes, including outcomes on quality of life and activities of daily living, is a concerning and we conclude that research on this basis is a priority. There is a need for an information system, which is universal, robust, clinically sound and focused on good patient outcomes. ISD has already started work on the essential preparatory work on improved coding of procedures. Good communication in healthcare is essential to good patient care and we see an educational need to ensure that adequate knowledge of those procedures, their uses and potential complications are included in educational programmes. They should embrace that with the encouragement additionally of good listening skills. In our final conclusions, we differentiate between the use of mesh in the treatment of stressed urinary incontinence and when it is used in the repair of pelvic organ prolapse. While we await the outcome of the prospect study, which is looking at mesh used to treat pelvic organ prolapse, as a group we considered, we had sufficient evidence to express concern at the use of transvaginal mesh surgery for pelvic organ prolapse and have concluded therefore that it should only be considered in the context of that multidisciplinary team assessment. The clinical experts on the group have also further reviewed the evidence on stressed urinary incontinence mesh procedures together with their clinical experience and considered the clinical significance of the complications reported. We conclude from this and from the patient evidence that the retropubic approach is preferred when offering routine surgery for women with stressed urinary incontinence. We have recommended that the expert group, which has already been set up, oversees the implementations of an improved way of working and of organising services. We are aware that we have still to publish our final report but consider that there is sufficient evidence to start in that expert group developing services and implementing recommendations based on the evidence presented to this report. I hope that this report goes some way towards ensuring that, above all, patient voices continue to be heard, believe and valued, and that women with those conditions can be assured that the treatment that they receive within the NHS is evidence-based, audited and likely to produce a good result while keeping to a minimum the possibility of an adverse effect. I will open up by making a couple of comments. I was not the convener of the committee when the petition first came forward, but I know from talking to colleagues on the committee and those who have shown an interest in the situation since it was brought to their attention that this has been, if not the most distressing among the most distressing issues that the committee has heard. I would like to put on record my thanks to Elaine Holmes and Oliver McElroy for bringing such an important matter to the attention of the Scottish Parliament. I think that it has been vital that that has been done. I would like to thank you for the work that you have started to undertake. I know that you have not completed it, but I think that it has certainly allowed us to keep the foot on the gas, if you like, in terms of taking this issue forward. I will open it up to committee members to ask questions a bit more, but just because I am new to this, I am trying to get a bit of context around that. The figure that you have given is that one in five women affected by the process have had difficulties of one form or another with the process. How many other procedures that are taking place in the medical field at the moment would have such a large number of people adversely affected and would be allowed to be undertaken as a matter of course? I find that quite difficult to answer because of such a wide range of it. I am not sure that I can answer and apologise. It sounds as if you are putting off, but it depends on what you define as complications, whether it is minor complications or serious complications. I do not know Rachel, but you want to add anything to that. Perhaps you might want to direct that more at the chief medical officer when she comes along. I am not aware of something that would allow me to say, well, that is the cut-off point for such-and-such. It depends on the severity of the condition, how it is impacting, what type of procedure it is, where it is done and how it is done. I am not sure. I do not know if you could help on that, whether there is an answer. I am not apologised for that. That is fine. If you do not have the answer, it is… Yes. Again, I think that it is a very difficult question to answer. I think that what I would say is that, as doctors, we would definitely recognise that no surgical procedure is without risk. It is always difficult decisions around balancing the likely benefits and the known risks that occur from any given procedure. Procedures are always on shifting sands, if you like, because there is always innovation in medical practice. It is really important that we understand as new medical devices come in what the associated balance of risks and benefits are. David Cymru and then Jackson. Thank you, convener, and good morning, everybody. Conclusion 4 of your report identifies gaps in research and an information collected by NHS. Could you comment on any difficulties the review faced in reaching its conclusion as a result of those gaps? As I said, we are lucky in Scotland in having good information, but, as usual, it is routine data and we are allowing it, and I will let Rachael Cymru comment on that. We are lucky in having the data sets that we do, the information, the numbers, as it were, and the ability to link data and to look at that. That gave us quite an advantage in looking at that. At the research data, the main gap that we found is in research going into the longer term. You would find research in looking at it, and I will let Phil comment further, and it would be one or two years. Some of the patients reporting those complications coming further down. That is what caused problems of having research body that looked on the longer term. Therefore, the information that ISD and Rachael Cymru were able to look at has got a longer term, so that helped much. The main thing about the research was that those things about longer term follow-up, including routine surveillance, longer term follow-up, and looking at not just clinical outcome, the operation work, but the impact on quality of life. How is this impact on how people go about their daily life, about their daily life or how? I do not know in terms of the research, Phil. Do you want to add anything to that? Yes, I'm happy to just pick up two points that you haven't discussed, Leslie. The first is that many of the studies that are undertaken are looking very clearly at a precise clinical procedure. A one-year or two-year follow-up for surgical complications is not an unusual practice in many of the randomized control trials and other well-constructed trials, which look at the procedure of interest against the alternative current practice, which is a fairly common research approach. A two-year follow-up is common within the material. Five-year follow-up is not impossible, but it requires quite a considerable research follow-up time and also a service follow-up time within the NHS. As a consequence of that, the recommendation is looking very clearly at how audit may be a way in which we can look at those longer-term follow-ups. The second thing to say is that many of the ladies who have had experiences that are adverse discuss it in terms of their everyday life rather than formal indicators of quality of life. There is a tendency within the research literature to look at those formal indicators of quality of life, which are somewhat abstracted from the type of day-to-day lives that we all lead. We recognise that that is a major gap in understanding people's lived experience, that the surgery may well give consequences into the types of day-to-day activities that we accept as straightforward, dressing, bathing, being able to get out of the house when they choose to, rather than when it is arranged for them, as opposed to an indicator of, for example, within one called the SF 36, whether or not we feel happy. The types of indicators of interest to people are not necessarily the indicators that we were finding within the systematic reviews. I think that Rachel will probably want to pick up on the longer-term data availability, because putting that material side-by-side with what we saw in the systematic reviews actually provides a very strong clarity in answering your question. So I could make some comments on the routine data that's available within NHS Scotland to help monitor the safety of any type of medical care, including these operations. So what we did, my analysis was based mainly on routine hospital discharge records and any operation that a patient receives in hospital is recorded in those national records using an agreed coding system. So they have a code rather than a description of what was done. One issue that we came across was there can be, in some cases, a considerable lag between an operation becoming available and actually a specific code that describes that operation becoming available. So in that interim period, provision of those operations are difficult to identify using the national data. So for example, even now, there is no code to record the provision of mini slings, which is a newer type of tape procedure for incontinence. So ISD has specifically asked the Health and Social Care Information Centre in England who maintains that coding system to develop, to create a code for mini slings. So at the moment, we're still in the situation where we can't say how many women are having mini slings. So that's one issue we came across, which is a very practical issue. The second issue, I think, so that's about identifying the actual operations that women are having. There are also issues around capturing adverse outcomes that happen after that. Again, sometimes that relates to the availability of specific codes as well. So for example, there are specific codes available for the removal of tapes, but there are no codes currently available for the removal of prolapse mesh. So again, we've requested that those codes are created. I want to be clear that it's not that these things can't be recorded. They can be recorded, but at the moment they have to be recorded using relatively non-specific codes because there isn't an absolutely specific code available. So that causes some issues. The other issue, I think, when you're using routine data to look at problems women have after operations, is we only were able to look at problems that were severe enough for women to be re-admitted into hospital. So they had a hospital discharge record. A lot of other women will have had possibly less serious problems that have been managed in an outpatient setting or by their GP, or perhaps they never even brought those problems to the attention of a doctor at all, and those we will not have been able to look at. There is information about care provided in outpatients, but it's less detailed than information on inpatient care. So that is those are other issues. I hope that answers your question. Can I begin also by congratulating Elaine Holmes and Olive McElroy on the work that they did bringing this petition to us? I see Marion Scott in the gallery from the Sunday Mail, and I think obviously she has been a tower of strength in ensuring that these issues came to us. I'd also like to welcome you, Dr Wilkin. We've heard a lot about you, but this is the first time the committee has had an opportunity to meet you. I'd like to thank you for your report. I'm quite proud, in fact, that it is Scotland that has produced what seems to me to be the first piece of qualitative research on this whole subject. It comes up with a lot of quite robust conclusions, some of which, frankly, will be for the Cabinet Secretary to respond too shortly in terms of what she intends to happen to them, because unless they're implemented, then, in fact, nothing changes. So the importance is really in how they're taken forward. But there are a couple of things that I picked out reading through it, and they're flavour things, and I just wanted your reaction. The first is, have we truly overcome the prejudice that seemed to exist within clinicians against the women who were reporting these issues? I notice in the testimonies to which you refer that, in the positive statements on page 21, I have been advised by my gynaecologist that fitting women with tapes to support their bladder has been suspended due to a tiny amount of problems, and I immediately arrested on this, which was meant to be one of the positive testimonies coming forward, as one A looked as if it had been solicited rather than volunteered, and secondly, had been solicited in rather a prejudicial manner. It left me with the residual impression that, notwithstanding what I think is the report that you produced which has identified concerns that your committee has endorsed, out there there may still be a broader sense that I'm sorry to put it like this, that there are some sort of silly hypochondriacal women who don't seem to understand that they were very lucky to have this operation in the first place. Now, have we overcome that prejudice? We can't have overcome it from this report, because this is a report. However, we did feel quite strongly, and I personally feel quite strongly, that there is an issue of listening to women here, valuing. I don't know, I'm a woman, and you wonder—anyway, I want some comment about that, but I'll go there. There is this issue about that. I don't think that we didn't look into that and exactly what we didn't go out and look at that particularly. As you say, the patient views come across strongly that they weren't listened to. I was very seized by that, but they went through a phase of not being listened to. That's why we put in the recommendation about education. Education is obviously not just about knowledge—knowledge of the suffix—which, of course, is a balance in terms of how many and what percentage. The majority are not reporting poor outcomes, but there is this significant one with really poor outcomes. The knowledge that that's there has to be there, but it's not just a case of knowledge in education, as you are aware. It's about that empathy, that appreciation, that ability to listen and actively listen, and to have the women involved in that. The work that has been done—excuse me, not until I wasn't involved at all—by the previous working group and an expert group on consent with members behind me on that, with Elaine and all of that, on that and looking at that. Now, out there, for stress urinary continence, is a much more detailed informed consent, so that consent truly is informed for the procedure. However, there is this issue of people coming back with complaints and being listened to. I think that there is this educational thing out there, and that is something that we do, although it's in there as a recommendation, but it is quite a wide-ranging thing. No, it hasn't happened already, but among the clinicians, I think that the clinicians that we've had on the group have talked about, you know, it's been a revelation for them as well, but obviously they are dealing with it for a day-to-day. We're talking about the wider community. I suppose that partly my concern is—we may hear from the cabinet secretary that she intends to accept the recommendations. I then am immediately struck, will there be a body of people, clinicians, who are then trying to have these recommendations set aside before the final report is published, in the sense that they feel that, while we don't agree with that, now that it's been set up as being a recommendation, we want to try and test that and overturn it, because we, you know, that's not been our experience and that's not what we want to do or agree with. I don't really—I mean, certainly from the clinicians that I have spoken to, no. I have to say, I mean, I am no longer a practicing doctor, which is, you know, I'm retired now. But the clinicians that I've spoken to are committed to a good outcome. I mean, I don't have that cynicism about people, I'm afraid, and I'm trying to think, is it because of where I am, but I don't have that cynicism. But I am aware of this problem that's highlighted, and I think—I don't get an impression from the clinicians, certainly from the clinicians on the group, and they've got a selling base, and we did have the Royal College of Obstructions and Gynaecology on the group, the specialist associations for both urologists and gynaecologists on the group, so they are leading professional organisations. But that's not to say that I think they're, you know. It's only because some, I think, sought to challenge the moratorium itself. Indeed. Which leaves me just, you know, wondering. I can understand where you're coming from. I mean, I think you have touched on the research. I mean, I am struck in the systematic review chapter 5.5 page 51. No long-term adverse outcomes were considered. No long-term adverse outcomes were considered. No long-term adverse outcomes were considered. No trials included in the systemic review. No long-term adverse outcome data were reported. I mean, one of the key recommendations out of this, which is the advising of adverse incidents, really has to be something which is put in place not just in the weeks after the operation takes place, but for a much longer period of time if we are going to truly continue to monitor it beyond this initial report. I mean, that is what you would be looking for, is it? Yes, it's true surveillance. And I think embedding it in the, that is the idea behind, and of course the expert group will develop this, of having an information system and to really look at how adverse events are reported, recorded. I think there's a body of work there to be done separate from the review as to how, what is the most effective way to ensure that that happens. And one final question, convener, if that's all right. One of the things that was exempt from the suspension were the SIMS trials. That does include what you identify elsewhere and here is a concerning procedure. What is your view then about women in Scotland continuing to be allowed to participate in trials, which include a procedure that you regard as concerning? Is that really acceptable on the back of this interim report? I don't think on the basis of this report or in my own experience. I have got the ability to comment on that. Issues such as that and the use of this procedure is really why we felt we had done a considerable body of work in the interim review. We brought this quickly. We are keen for the expert group to set up. We are keen for the cabinet secretary's response to that. In a strict term, we used—there is the numbers evidence, the information, there's the research evidence, which does not, if you read it, it does not give a clear yay, nay, really. We decided to put on top of that the considerable body of evidence from the women's experience—good and bad—and also from the clinician's expert opinion. What does that mean in practice? Then we came up with those recommendations expressing concern. Now the expert group has to take that forward and see what does that mean for practice in Scotland just now, including research practice. If it is a loophole through which recommendations that might be even accepted within the overall report, if participating in a trial allows people to circumvent what is a recommendation, that would be unfortunate. It's something that I have got no knowledge of. Maybe I could make some comments on that. As I understand it, I'm not directly involved in the Sims trial at all, but as I understand it, it's looking at the relative effectiveness of the newer mini-slings, the single incision tapes for incontinence, and the standard retro-pubic tapes. You say the report indicates some concern about mini-slings—I assume that's what you're referring to—and there is indeed a Cochran review that does indicate some concern about that, but the Cochran review, almost all the trials in that review relate to the very first type of mini-sling, which has now actually been withdrawn from the market. Those are newer versions of mini-slings, and there is genuine uncertainty as to whether there are theoretical reasons for thinking that they may well be superior to some of the standard tapes. There is genuine uncertainty, and I would say that it's reasonable to do that trial. No trial would be approved without careful consideration of the ethical issues involved. I'm not sure that I'm entirely convinced to have to say that, but fair enough. John Wilson, you're followed by Neil. Thank you, convener. Good morning. I welcome the interim report, because I think we have moved a long way from when the petition was first put before this committee, from a situation where women felt that they weren't being listened to to actually seeing an interim report that actually takes account of many of the women's experiences that they face. However, there are still questions that arise regarding the interim report in relation to some of the conclusions and some of the issues that are raised in the report. I would like to start off by asking about the evidence. You said that there is very little statistical evidence to highlight the long-term impact on women that women face, because what you have said is that the issues relate to the experiences of women and still talk about a minority of women, but at the same time you admit that there is not enough data being collected on the experiences. You gave, as Jackson Carlaw indicated, some positive examples of where women feel that they've had a positive experience of this procedure. However, in reality, we don't have the whole picture. We don't have the experience of every person who went through this procedure. What we were told as a committee previously is that some of that data was not only not collected but did not have to be collected by clinicians. In terms of the recommendations before us, I note that you have said that you want that data collected and you want better monitoring. How can we be guaranteed that that will take place and ensure that we do get not just the short-term impact but the longer term? The comments have been made about the quality of life and the day-to-day experience. However, there is also the issue about the long-term impact that may not be noticeable immediately in relation to an adverse effect, but it may be a few years later—five years, ten years down the road—that there is an adverse effect. How do we ensure that that data is collected? As I said before, we have the database in Scotland, so we have longer term in the IASD data. That is one of our main recommendations. I would hope for a response on that. Richard, do you want to say something about the long-term nature of what you have looked at already? I find that quite a difficult issue, because it is a balance. Any monitoring needs to be to some extent proportionate, otherwise it would place a really heavy financial strain, if nothing else. You need to have sufficient monitoring to be very clear that you can pick up any serious safety concerns without completely paralyzing the system. It is not true to say that we have no information in Scotland. We do have information. IASD is a very important part of the whole NHS in Scotland. We have had and will continue to get records from every inpatient admission, every new outpatient attendance and so on. Those records are inevitably—because they are high-level national records—they inevitably only contain quite a low level of detail. They do not tell you things like how the woman feels and the quality of life that that woman is experiencing. It is a question of making sure that the routine data that the NHS holds is as robust and relevant and as well used as possible and seeing if that needs supplemented with anything else. That something else might be one-off research trials or qualitative work. It may be some other forms of non-routine information gathering as well. I think that there is great potential value in some of the professional databases that surgeons are encouraged to participate in. We know that they are not used as well as they could be at the moment. It is not there, Dr Wood. They said that surgeons are encouraged to use. That was part of the problem when the petitioners came to us. Surgeons and clinicians were not recording the experiences of the women and the women felt that their experiences were being ignored. Therefore, the issues were not being addressed and they felt that they were being devalued in some way because the clinicians and the surgeons were not prepared to gather that data and record that data. Can we be assured not making suggestions or recommendations to surgeons but that we can find a way of ensuring that surgeons and clinicians do record where there is a recognised adverse effect in relation to the procedures that are being carried out on women? I think that that is the basis. Probably those are questions that you might want to address in the next session as well. As far as our recommendations are concerned, there were two questions. One was looking at the need for an information resource to enable them to do that, so in an organised fashion and to enable comparisons to happen, as Rachael has said, at a national level and a local level, to organise into multidisciplinary teams and groups. There are clinicians who are committed—I agree that it is not universal—but we heard of databases that the professional bodies, as Rachael has mentioned, would contain that. The trouble is that they are standalone and they are not able to get the richness. The recommendation that we have made is for ISD to work with those professional bodies where they have a date to see if we can. That is about having the data. Yes, there are professionals. There are some very committed clinicians who are collecting that data. You say about the issue of how we can ensure—again, I do not think that that is within my gift—that there is an appraisal system. There is a statutory revalidation system now for medical staff, which is based on enhanced appraisal. That looks at patient outcomes, usually, and there has to be evidence for that. All those recommendations did not come out of the blue. They are based on that, as building blocks towards assuring that. Decisions on how far that goes, as Rachael said, is not for us in the review. That is for the decision makers in terms of how resource committed to it. Thank you for that response, but the reality is that it is in your gift as the chair of this working group to strongly recommend the way forward in relation to how surgeons, clinicians and others deal with the reporting mechanisms. As you are quite right, it is up to the Government how they decide to take that forward, how they fund that, but it would be useful in terms of the recommendations. There is a strong emphasis on the collecting of that data, and not just about encouraging surgeons and clinicians from recording, but about effectively mandating surgeons and clinicians to collect that information so that we are clear about the evidence that is being gathered. I think that we felt that it is part of the appraisal force that was equivalent to mandating, but I take on board what you are saying and keep it in mind for the final report. Thank you for that comment. Can I go back to the group members? I sat in the committee a number of months ago and we heard the evidence from representatives of MHRA, who virtually dismissed the concerns of the women in relation to the procedures and dismissed any impact that the devices were having on women's lives. Can I take it that all the group members are signed up to the interim report and to the recommendations that are currently contained in it? Yes, we have had no adverse. The report was circulated in many drafts. I would say that I felt that, if you are saying that MHRA signed up, yes, they have not been indicated, they are signed up to it. Members of the Scottish Mass Survivor Group were very clear that they wanted all those things in place, the criteria that we put down before the commencement. I think that it says that in the report. No, if you are asking specificu MHRA, yes, they are signed up. Thank you very much for that. Finally, you have indicated in the opening of the executive summary that you are still waiting on the opinion of the European Commission on the scientific committee on emerging and newly identified health risks opinion. Has the interim report been sent to the European Commission? My experience in the past is that commissioners are keen to hear the reports from parliaments in Europe. Given the significance of the interim report on the devices being used, it might help to influence the outcome of any decisions that are being made within the European Commission, particularly of their scientific review body. I think that they have done that, but I will check with the Secretary of Interior, of interest is that we have had response from the international professional organisation of Eurogynarchologists, so they have had that internationally. There is international interest in that, so I would be quite surprised if it has not been so, but if not, I will ensure it does. I know that people have congratulated the women who brought us forward. I do not congratulate them. I sympathise with them. They should never have had to go through this physically and emotionally torturous process to get to this stage. The only reason they did have to do that is because there was a willingness amongst the medical profession to believe those people who said mesh was a success and an unwillingness to believe those who said it was not. That is the issue that has got us to where we are today. I just want to pick up the first point on a couple of the issues that Dr Wood raised. She mentioned the difficulty of getting a code. That seems incredible to me. Could you explain why it takes so long to get a code? If Tesco gets new brandy beans in, they will code it in five minutes and it will be on sale. I know that we are not dealing with human beans and we are not dealing with beans, but how on earth does it take such a long time for someone somewhere to come up with a code? It is a valid question. It is not within my gift. I am not the person who decides whether new codes are agreed or not. The codes for operations is the Office of Population Sensors and Surveys system. That is maintained now by the Health and Social Care Information Centre in England. The coding system that we use for patients' diagnoses is the international classification of diseases. That is maintained by the World Health Organization. That is even more complex because that is a global system. For either of those coding systems, there is a process where any interested party can submit a request to have a new code generated. These coding systems are used for international comparisons and there is a value in having them reasonably stable over time, otherwise it is just chaos and you cannot do the kind of analyses that we are doing. It is reasonable that a very controlled process is required to agree new codes. It is quite a lengthy process and I cannot comment on why it is lengthy. You would have to ask the Health and Social Care Information Centre about that. On the data, when we met the previous cabinet secretary two years back, I had asked parliamentary questions and asked how many adverse incidents had been reported. The answer was six. At that meeting, the women around the table said, that must be us then. Since then, through consistent freedom of information requests and various methods of data gathering, we have now found out that it is at least hundreds, and I would probably guess more than that, probably thousands. How can we provide information to women who have been affected by this if we do not know how many there are and where they are and where they live? How do we alert them to the problem? Secondly, shouldn't we just be doing that? Surely, if someone has something that has been described in the term that we are using concerning in their body, if that was me, I would certainly want to know. Why is the recommendation not that everyone who has been implanted and we know where they are being alerted that there is a potential concern here? How do we alert them? How do we make sure that the whole informed consent is important? The informed consent leaflet, which has been developed by the working group and the expert group with involvement of patients, is probably one of the most extensive works in surgery, I would imagine, of informed consent, of taking into account all the... When a woman goes forward with stressure and reincontinence, of being aware or with pelvic organ prolapse, of being aware of all that, I think that that is very important. I think that the work that has been done in that group, nothing to do at all with us round the table, is really quite leading in this. There is a lot of information. Again, it is not always about provision and evaluation, it is not always just about giving information, it is about people having the time to assimilate that, to be assisted and people who have difficulties in assimilating written information. There is a whole process around it, and that is what needs to be put in place, not just the written information. I think that informed consent. Where we say that we have concerns, all that we have about is looking forward. What we have to be aware of is that no regulatory body in the world has withdrawn, has done anything about those. In looking at the... Phil can mention, in the evidence there of looking across all the evidence, we have not found any... Someone have said reassessment. I think that there is one Phil can comment on this reassessment, but the evidence, the actual written evidence, is there. The regulatory body for Scotland as well as the UK is MHRA, so I think that that is the body that would be looking at that. I cannot comment about that. I am just saying, looking forward, and we are looking at forward in improving patient care, that based on the information that we have got, based on the evidence from the patient's clinicians and somewhat of the evidence that we have got from those two strands, that those are of concern and that they need to be looked at, not never, but they need to be looked at in the context of those two procedures, not mesh. There are two procedures, there are two ways of doing it, and that is specifically what our recommendation says, because we felt that we had the evidence for that. I do not know if that answers. I am afraid that you have said a lot of words there, but I do not particularly understand and do not come to a conclusion. Given what we know, should we not be writing to women and saying that there may be a problem here? I think that people have the right to be alerted to the fact that they may have something in their body that is defective. Sorry, I am not finished here. I could ask you personally, and if you were a male, I would not be asking you this. If you had gone through this procedure and there were these concerns, would you not want to know? I think that my gender is irrelevant. I will say, I see where you are coming from and I do not have the evidence to say what I was trying to say is that I have not got the evidence and the report to say that, nor would it be the business of this review to say that. Okay, Joyce Scott. Thank you, convener. I welcome this preliminary report. However, I am taking the combined totals of operations from pages 25 and 23 of it, and I am not certain from my lay perspective how many of those operations required mesh implants. I am nonetheless concerned about the size of the study, which seems to deal in the low hundreds of people. When you add up those numbers of operations, they are somewhere approaching 30,000, and yet we are dealing here in terms of a report on the very low numbers of hundreds of people. I think that this is probably a welcome piece of work as a first step, but I think that there is still a huge amount of work to establish the scale of the problem and, hopefully, reassure ourselves that very few people have been affected by this, but it is a major concern of mine that there may be many, many more people women affected by this than the study somehow suggests. Perhaps I am getting the wrong end of the stick and I am happy to be corrected by you in that regard if indeed I am. It is all right. So, maybe I can hopefully clarify some of those issues. So, the study that you are referring to specifically, that is the work that I did in ISD using the national routine hospital discharge data. So, this is a complete population-based study. Unlike a trial, it is not a selected group of women. We looked at all women in Scotland who would have these procedures. The numbers of women having tape procedures for incontinence are actually very high. We have got a lot of women there, because that has been the dominant procedure for stress incontinence for some years. On page 23. So, if you look, the tape procedures are the last three there. So, you can see that in recent years, the vast majority of procedures being done have been tape procedures. I would say that our study did not quite capture all the operations that are going on, because we did look at all women, but then we focused on women that were having single procedures and women that hadn't had an operation in the past. Because sometimes women have multiple operations at the same time and sometimes they're coming back for repeat. And if we included them, it was difficult to see what had caused any adverse outcomes. So, this isn't the absolute totality, but it's quite a high proportion of these operations. Then if you look on page 25, that shows the numbers of women having prolapse operations. So, it is true that the mesh, if you look just at the first two lines, the anterior repairs for anterior prolapse, standard repairs without mesh are much more common than mesh repairs. So, mesh repairs have never been used in large numbers in Scotland for that particular issue. And the same is true for posterior repairs. And then we get into slightly more complex. The last four lines are operations for prolapse of the top of the vagina or the uterus. So, the incontinence and the prolapse are quite different, but this is the totality of women. And compared to a clinical trial, these are quite high numbers. Even the anterior and posterior mesh repairs, I accept that we're into two, three, four hundred women included in our study, but it's quite a high number compared to the numbers that would be included in a clinical trial. And I think it does give us quite a robust idea of the proportion of women in the real world, in normal care in NHS Scotland. This isn't a trial, this is just what's happening in the NHS. The proportion of those women coming back up to five years after their operation. So, and I think there is a clear signal. So, even though we've got quite a small number of women having mesh anterior or posterior repair, it's very clear that the risk of coming back for complications in the subsequent five years is considerably higher for those women than it is for women coming back with a non-mesh repair. I would also say, is it not possible to go back a great deal further than five years? I myself have recently been invited to take part in a trial going back to an accident that I had some 18 years ago, neurological sense. I just wonder if it isn't possible to go back further than the short timescales it appears that you're dealing with relatively speaking. I think the short answer is no, it's not possible for this particular condition because they were only introduced, tapes were introduced around 2000, 2001, 2002 and we've captured all those. The mesh anterior and posterior repairs really only came in in the mid-2000s. So there's a limit to how long, you know, obviously over time we'll be able to look at that group of women and say how many came back with complications over 10 and 15 years, but because they're relatively recently introduced procedures, a five-year follow-up is really all we can do now to get a reasonable number of women in the study. How long do records go back or how long are records available within? ISD has, Routing Hospital Discharge Records are available for decades. They go back to the 60s and 70s. They've become a bit more tricky to analyse the very old ones, but certainly into the early 80s is not a problem for us to analyse, but these operations weren't being done at that time. One final question from myself, if you don't mind. I've heard a lot about the comparison between Scotland and elsewhere and it appears as though in terms of analysing this situation we're further ahead than most other countries, and that's to be welcomed. I think that's because we've had this petition and the review was asked to look for that data, but the data is incomplete by your own admission. You're looking for information, you're trying to complete the information that's available, but my recollection of the response around this petition initially from the Scottish Government was that there should be a suspension of the process while the work is undertaken. Subsequent to that, it appeared that there hasn't been a suspension—I heard the word moratorium earlier—there hasn't actually been a moratorium because, as far as I understand, those procedures have continued to be undertaken. Is that correct? My understanding is that they've reduced remarkable, but still some procedures took place. I think that you might have to direct that again to Cabinet Secretary, but my understanding is—we were under the impression that there was a suspension when we started the review—that some of it was taking place in the context of clinical trials. I wasn't directly involved in that. Our understanding was that. Also, there is a suspension because, as one member said, the clinicians want to start doing it, and women with the condition that has been through the informed consent want it to start. Therefore, it's not happening. However, the statistics would show that, very much less, there is still some taking place. Could I return to another point? I don't think that I answered your question at all. Don't think that you did either. No, and that concerns me. Rachael Scott, you were asking about, should we recall people who have had the retro-pupil report? Yeah, I think that my feeling is that I don't know, because the ins and outs of recall is a procedure that is up to the power to be, as it were, but actually having good information with women's GPs and that they know. I think that what I would hope would be—if you're asking me personally—that this idea that it's okay to say that you've got self-confidence as a woman to say, actually, I did have this procedure, and what I'm feeling is true. If you're asking how I would do it, I would hope that I would have that, and not women can go along and say, I've had this and getting these symptoms, I think it's due to the mesh. Here we are, it's something saying that this is a procedure that maybe nowadays is recommended that should only be in exceptional circumstances. If I recall, I would leave to somebody else as to whether that's next. I don't know. I haven't got enough knowledge if that's the best way. That's what you would do as a woman in your mind, in your body. Another woman, not with your personality or your confidence, might sit at home terrified and be completely oblivious to what the causes of her problems would be, because she doesn't need to give a hoot what the Scottish Parliament does or what the Petitions Committee and the Scottish Parliament look at it. Does it read the Sunday mail and listen to the politicians? That's the person and the people that I'm more concerned about. How do we get the information to them? Can I ask one final point, while I've got the opportunity? Sorry, Chairman. The minority report has been produced by some of the members of the committee. Have you seen the minority report and will you be commenting on it? I haven't seen the minority report, no. I'm aware of the concern. I think that's what I was trying to allude to when you asked a question about the MHRA, and I'm knowing that there is concern, so that's why I answered that. I know there is. I'd hoped that we'd phrased the report saying that all these things have to be in place before. In a way, I think that I know it was in it. It would be great for a copy, but that's why I was trying to answer that. I take your concern about the other thing. I see what you're saying. I think that it's something that has to be thought of, as to how we ensure that. I wanted to follow up something with Dr Wood, because it was in response to John Wilson's earlier evidence when we were talking about the potential of contacting all women. I think that I heard you say something like, there has to be a balance struck or there would be a cost involved and all of that. I'm trying to understand what I'm striking the balance with. In the discussion that you had with Mr Scott, in the grand scheme of things, it doesn't seem to me that the number of women involved represents such a huge body that it wouldn't be possible to have a more proactive strategy of on-going contact with those women and monitoring their performance going forward. We're talking at a number somewhere in mesh, I think, between the overall number of operations of, I think, Mr Scott said, about 30,000 and the mesh ones being about half of that potentially. To me sitting here, that doesn't sound like such a huge or impossible or financially onerous responsibility for the health service to proactively contact women and also to return to those women at later intervals when we are concerned that a successful experience now might have complications of the rise at a later date. I could try and clarify what I was trying to say. I work in ISD, so I'm primarily interested in the routine data that the NHS collects on all patients all the time. I think that's where I was trying to express a desire for proportionality. I don't think it's a sensible suggestion to say that we should massively expand the routine hospital discharge records to collect extensive information about how women feel and the quality of life because I don't think it's the appropriate way to do that. So I think there is a sense of proportionality of what routine data should the NHS collect all the time on everybody so that we can do these kind of analysis when the next issue comes up on another aspect of medical care. There is then separate questions, I think, about what specifically should be done about this type of mesh surgery and I think that it's a different issue. I think there and in that particular case there are some general lessons for the national data from this work so there are some things like having more precise information on the type of device that's been implanted in a woman and it probably is a good idea if that were collected in the routine data. So that's one issue but then there probably does need to be something additional specifically for mesh and I don't dispute that at all it's possibly not primarily ISD's job to do that so I think I was trying to reflect my views on the national data that needs to be there for all patients all the time. So there may be a job of work to be done that maybe something we need to put to the cabinet secretary but it's not necessarily falling into your particular sphere of research collection. It's a balance of what need what can we learn about the routine data the the actual what's in the data what's collected how it's analyzed how we direct our energies into how we analyze those data but what complementary activities would be beneficial specifically about mesh that may be some kind of national audit or the professional databases and ISD would be involved in that but that's not solely our within our gift. I hope that gives you an idea of what I was talking about. That's helpful. Thank you. That in other conditions there have been such national audits which are going to more extensive detail. My colleague here would remind me a bit on Hitfracture for example where more extensive information is is put in place and I think what's known and referred to in the report is the BSug database which is the professional database which acknowledged you know not every surgeon before somebody says is that but it is a more extensive database and so there are examples where audits rather than routine data where the information is input but in a routine fashion but not by ISD would give more detailed clinical and lifestyle information. Okay I was leading up to a final question that we were going we got we got into another discussion but it wasn't unhelpful because it actually helps to make the point that I was leading up to which is about the incompleteness of the data and the word that you used repeatedly and Dr Wood used it just as she was concluding her last comments was about this balance being struck about a need for balance. Given that there is such incomplete data given the level of concerns we've heard around the implications of this procedure being conducted given that we thought that there was a suspension in place which might not actually be a suspension given that there are still procedures being undertaken as part of clinical trials. Were you asked on balance to consider adapting the precautionary principle which says until we know more about this we should not be doing this? No we weren't asked that specifically and our remit was to find the information and to look at that and to see so in terms of whether it should be suspended or not that was not part of our remit it was looking at what information we've got to enable that so in terms of you know was that part of a remit certainly not in the interim report we weren't asked that. Okay that's helpful in terms of what we might have to ask the cabinet secretary but on behalf of the committee can I thank you for your contributions this morning again we'll probably have you coming back when your work is more complete but in the meantime thank you very much for what you've given us this morning and I'll suspend the committee for a few minutes to allow a change over witnesses thank you. Okay thanks everyone I'll reopen the meeting again because we're continuing with our evidence on the mesh medical devices and I now welcome Shona Robison the cabinet secretary for health well-being and sport to our meeting the cabinet secretary is accompanied today by Catherine Calderwood the chief medical officer for the Scottish Government I invite the cabinet secretary to make a short statement before we we go to questions over to you cabinet secretary thank you. Good morning convener thank you and thanks to the committee for providing me with an opportunity this morning to respond to the interim report of the independent review of transvaginal mesh implants I think we certainly all appreciate how harrowing this has been for the women concerned and for their families I've met with women experience complications and I've read numerous letters and emails expressing their pain and distress it is deeply concerning to hear the extent of their suffering and they have my full sympathy this report has come about as a result of those same women affected bringing this issue to the forefront it's clear that this is a very emotive subject that has differing views the report has provided both evidence and informed opinion helping us understand why there are so many apparently conflicting facts and opinions regarding transvaginal mesh procedures regardless of your opinion on this issue this report will help to improve services to benefit all women suffering these conditions and I'll see more later on the legacy of those who have brought this issue forward as you know I've only recently received the interim report from the independent review and I want to begin by thanking members for their hard work producing this report I understand the committee has just heard evidence from the chair of the review this morning and I will set out the Scottish Government's initial response to the conclusions and recommendations which will not yet developed in detail will certainly set out the way forward this work supports the call for improvements in care by the the women in the Scottish mesh survivors group the review was asked to determine the safety and relative efficacy of mesh implants for stress urinary incontinence and pelvic organ prolapse these are two entirely different conditions and the review has rightly considered them separately the review has recommended improvements in the management of individual patients and the Scottish government agrees I can confirm that the expect group will continue its work with nhs planners and develop pathways of care for both stress urinary incontinence and pelvic organ prolapse this will mean developing pathways of care that are firstly consistent with national guidance and delivered by a multidisciplinary team that includes primary care and other relevant community services and secondly that surgery is only considered after conservative measures fail if surgery is needed then all types of surgery it will be considered we concur that clinicians should provide evidence of involvement in multidisciplinary team working including an audit of their activity and a record of their reports of adverse events the expect group will be asked to develop this protocol with a view to medical directors as responsible officers incorporating this into the clinicians appraisal process I completely agree that informed consent is a fundamental principle underlying all healthcare and commend the earlier work of the expect group developing the patient information and consent leaflet for sui this valuable work will be developed in the leaflet revised to include additional information including details of the specific implant used this will mean that if a woman experiences a complication then she'll have the information required to report on adverse event to the medicines and healthcare products regulatory agency the concept of this leaflet will be extended to pop procedures the development of care pathways for these conditions will take account of the time needed by a patient to discuss and reflect on the information provided before making a decision one of the key areas highlighted in the report is the gap in evidence relating to long-term outcome data the report has recommended that this is addressed through research and I've therefore asked the expert group to encourage research in this area and discussion with the chief scientist office and other research funders my predecessor alec neal asked for an independent review because of growing public concern about the number of women experiencing complications linked with under reporting of adverse events NHS information services division ISD has undertaken a thorough analysis of existing hospital discharge records this analysis has highlighted the complex decisions clinicians are presented with when treating women with these conditions the report has distilled this complex information in a way that will help women and clinicians make informed decisions when agreeing a treatment plan ISD's work has highlighted areas for improvement and work here is already commenced this includes work on a UK basis to ensure procedures have codes and implementing these to allow them to be reliably identified in routine data as quickly as possible secondly my officials have already met ISD to consider how to take forward the development of existing information systems in conjunction with other work on the unique device identifier to support active monitoring of these procedures the expert group will lead on this work stream and will liaise with UK wide bodies to investigate the feasibility of developing and maintaining a registry I'm happy to endorse the view that the expert group should review the training and information available to clinical teams and look at ways of incorporating patient views in multidisciplinary team working I'm pleased to say that a helpline was launched in august and this has been a welcome addition officials are continuing to work with those involved and posters advertising the helpline are being planned I'm content to endorse the recommendations on the routine surgical approach where mesh surgery has been agreed subject to the outcome of the final report I understand the interpretation of available evidence and informed opinion and supports the routine use of the retro pubic approach for stress urinary incontinence and any variation considered as part of the multidisciplinary team assessment the interpretation of the evidence currently available for the use of mesh in pelvic organ prolatch repair has also led to the review concluding that this procedure should only be available in exceptional circumstances with any variation considered as part of the multidisciplinary team assessment the independent review awaits the final publication of key research reports before it can publish its final report and while I'm content that the expert group develops the foundations of these services as outlined in my preceding statement I have requested that the services are not introduced until I've received the final report and I'm satisfied that the improvements have taken account of all of the evidence we can then work to introduce improved services uniformly across all health boards in Scotland I want to conclude by thanking Dr Wilkie and members of the group for their work it's clear that both the evidence review carried out by the Scottish public health network and the analysis of health data by NHS information services division are thorough and have brought some clarity to what are complex issues but I also want to say that I understand how incredibly difficult this has been for those involved in the review process for some highlighting issues that are extremely painful to consider because of their personal experience I want therefore to reiterate my gratitude and hope that they can see the difference that each of them has made because they've been prepared to speak publicly of these very sensitive issues and work through the difficulties encountered women who need this service in the future will benefit from this work this improvement to services for women experiencing these distressing conditions is their legacy and I understand that the independent review anticipates publishing its final report early in 2016 subsequently the Scottish Government will publish a full response and ensure that the committee is informed of this thank you convener for hearing my initial response to this important work thank you very much cabinet secretary I'm going to open up by asking David Torrance the deputy convener to ask the first question thank you convener and good morning cabinet secretary alex neal with previous cabinet secretary for health and well-being announced that he would suspend the use of tv mesh in scotland some clinicians still continue to practice can you tell me why and how will cabinet secretary ensure that recommendations of the report and any future recommendations of the expert group are translated into practice by clinicians yep so let me be clear first of all that the the numbers of procedures carried out have have dropped dramatically and therefore there have been very very few carried out in the light of the suspension what I've said and I've answered this in in Parliament on on a few occasions now is that where the woman herself was asking for the procedure because of the the distress that her condition was causing and that the clinician was prepared to continue in that case then that those are the circumstances of which procedures could could go ahead but they have been very very small in number last Catherine to elaborate on that in a second in terms of practice by clinicians going forward I mean I want to be very very clear here the recommendations of the group will be implemented and they will apply in the same way to every part of Scotland so Catherine as the CMO will ensure that through her work and her guidance that clinicians will be adhering to the new ways of working and making sure that the recommendations of this report will be taken forward by each and every one of them and that that will be monitored and appraised Catherine do you want to so when the previous CMO wrote to health boards asking them to consider suspending the mesh there were of course women already on waiting lists so that they were expecting a procedure what I undertook at that time was to speak individually to clinicians who called in the the women from the waiting list to have a conversation with them about the suspension and at that time we had already produced out a very comprehensive consent form with a lot more detail on it and that was produced for use in all health boards so that the women who then subsequently have gone ahead to have the procedures were fully appraised of the risks they were made aware of the suspension and of the complications that some of the women behind me had brought to light and so that they were going into those procedures with a lot more information and also understanding that there were some questions that were going to be looked at in this independent review that had been commissioned so my understanding is I think there have been 76 procedures for stress urinary incontinence using mesh and the prolapse surgery because of suppression of small numbers we have to ask individual health boards that the numbers are so small we can't reveal those so that would make me think that those were numbers less than 10. Can I just come back on this question then because it was quite clear to me I wasn't on this committee at the time and I was following the the issue as most MSPs were through speaking to colleagues who were more closely involved in the discussions but also picking up via the media and it was the cabinet secretary at the time who was you know quite forceful in putting forward a message that there had been a suspension of this procedure now he may have known that it was caveated in terms of doctors being allowed to take forward clinical tests that some people might be allowed to do it but do you believe that the message that was given because I distinctly recall the outcry when it was discovered that these procedures were continuing to take place so when the cabinet secretary at the time said that there was going to be a suspension people believed that that meant that there would be no more of these procedures do you believe that the cabinet secretary was clear enough and he understood the distress that when it was later discovered that these procedures were continuing that people felt misled or that there had been some miscommunication which needed to be addressed well I mean I think the first thing just we need to remind ourselves of is that this this isn't a banned procedure in terms of the under the HRA and it's a regulatory authority that would ban a procedure in the light of evidence that there was concerns that that procedure should not be used so it's not a banned procedure so there what the cabinet secretary did was asked boards to suspend in the light of concerns that had been raised while the expert group was able to to do its work in terms of the independent review however if I mean I wasn't obviously around the detail of this at the time but looking at the what was said looking back at what was said and there was always I think the the chance and the choice for a woman who was wanting that procedure in the full light of all the information and as Catherine has explained the far more robust informed consent procedures if that woman still wanted to go ahead with the procedure and given it wasn't a banned procedure then that would be a clinical decision in liaison with the patient and that there was scope for that still to go ahead within that set of arrangements but with full informed consent and of course the level of information that Catherine pointed to earlier on now if there was a if that if there was a communication issue around that and that wasn't clear at the time then you know obviously accept that if that was not the perception that some people had then you know that that is perhaps a communication issue of the time but I looking back I'm pretty clear that that was always there as an option for women because otherwise you'd be saying to women even though you know all the informed consent even though this isn't a banned procedure we are not going to allow you to have that procedure and therefore when I answered those questions when I became cabinet secretary in parliament I tried to put the point across that for some women they may still have chosen to go ahead with that in the full knowledge of all of the potential risks and the full information and of course the full knowledge of everything that had been in the press for that that women had brought forward but if in the light of all of that women still wanted to go ahead then the clinician would have that choice it might be useful then cabinet secretary for that as your perspective because I certainly don't recall it I don't remember those caveats being added to any press statements that came from the Scottish Government I could be wrong in that so if you have those press statements if you have that information could you send it to the committee because you can't see this but I can see the people sitting behind you shaking their heads when you're saying that it was an understanding of the caveats. Yeah I didn't understand that might not have had that perception and that is a communication issue but Catherine do you want to say a little bit about I think there was a sentence underneath the cabinet secretary's call for a suspension which talked about a clinical decision in the full light of information where a woman was approaching a clinician because of severity of symptoms so there was a phrase which was perhaps not widely reported but which did allow that clinician and woman interaction. Maybe she'd have made it clearer at the time then Jackson. Thank you convener yes it might have said would you like to face a firing squad this morning but some of the soldiers might not have bullets on their guns today. I don't think we practice medicine like that. Yeah cabinet secretary I'm very pleased because I think what you're saying is that you would like this moratorium to remain in place until you're satisfied that the recommendations of the report which you are accepting have been implemented and to a degree that you believe properly reflects their respective importance I think that's that's essentially where we're at in the first instance yeah it leads me to three questions. The first really is to say to you and this is a subjective comment I appreciate but one of the most deeply unimpressive witnesses this committee heard from was Dr McGuire of the MHRA who in his evidence really confirmed what seemed to us to be an underlying impression of the petitioners that there was a lack of serious regard for the condition which many of them had found themselves in and in his evidence in terms of the wider research that had been done at one stage rather incredibly to me it boiled down to three people at some university somewhere in a grant of less than 30,000 pounds who'd spoken to a handful of people three years ago and on the back of that he was asserting to us that really all was well I noticed he was on the review group and really I suppose there's a question for government and it's something that goes beyond even the scope of this particular incident but firstly would you expect the MHRA now in some way to reflect the conclusions of this report which has validated that there is a concern underlying which they seemed to be unaware of and are you satisfied as cabinet secretary in a much broader sense that the MHRA who pled to us that so great was their workload with thousands of things they had to monitor and so few people really had the time to do anything that actually we have a body in the MHRA which is properly able to respond when an incident of this kind occurs because so much weight is given to what they say and that was what was staggering to me that we were being told the MHRA say there is not a problem but when we asked the MHRA what they'd done to find out if there was a problem it was precious little so first of all I would expect the MHRA absolutely to look at all of the evidence including what's in this report and what will be in the other reports that are still awaited and obviously the English report and there are other reports as well I would absolutely expect them to look at all of that and any emerging evidence from anywhere else and that's what they should do I mean with regard to the evidence session and what was said I mean obviously that's not something that I can say anything other than I get the distinct impression that it wasn't regarded as an evidence session that was particularly helpful that whether or not they have I understand some of the issues being raised about the attention that the MHRA are able to give to individual products I think given the extent of concern around this issue I think we would expect the MHRA to give particular attention to it now what I can do in the light of the report obviously the MHRA are aware of our report but I certainly in the light of what you've said and what the committee's views if they are same as yours which I'm assuming that they would be would be to make sure the MHRA are well aware of the committee's views as put to me this morning I'd be happy to do that and to express the concerns that you've expressed this morning to them I'd be grateful because I think that the on-going concern is that another episode in a completely unrelated field could arise and I think our confidence has slightly been shaken in the underlying research capability of the MHRA and they are willingness to make very emphatic statements which actually this report as suggested might not be the case I suppose my second question then is relating to the Sims trials now they were subsequent to the moratorium or the suspension specifically then excluded by the cabinet secretary in order that they could continue but they include and I imagine they still do but they include procedures which this report has now identified as being of concern and so I wonder therefore whether you feel in going forward that is appropriate so I think that obviously having just received this report you're absolutely correct that we need to go back to that research group and what we would need to look at is whether there is it's feasible to change the protocols of that research or have there been a number of women recruited already that we would need to go back to the other option is of course that if it's not deemed appropriate then we don't continue with the research study I think that's a that's a very important conversation to have with the researchers well cabinet secretary I'd be grateful if through you and the chief medical officer this committee could be advised I'm sure parliament would want to be advised to of the consideration you come to and I hope that could be an early course yeah I mean you'll appreciate we've only just received the interim report and we're considering obviously we've come here this morning with our thoughts to date but that is something that is as Catherine said we'll have to resolve and we'll do that as quickly as possible and we'll make sure the committee and thank you and my final question really relates to now that we have a report that has substantiated the fact that there is a concern the communication of what we now know to those women who have undergone the procedure and our recognition really in this report that we don't have long-term data collection in terms of whether or not issues might manifest themselves at a much later point in the process you've talked about the posters advertising the helpline but it looks from the report as if we're talking about today somewhere between 15 and 33,000 women across Scotland and I wonder should we not or should the government or should the some some official body not actually be much more proactively contacting all women who've had this procedure identifying I admit that for some of them there will not have been an issue but making clear to them that for many there are and that we don't know whether this might not manifest itself at a later stage and proactively advertising the helpline in that individual communication so that it's not just a helpline where my mother or my wife might see it advertised when they walk into the GP with a sore throat but it's actually the women who have had the operation who are being specifically told and now look here is a helpline because I think the concern we have is that there may be women out there who are suffering symptoms who still yet don't realise they are part of a much wider body of people who are and that it relates in some way to the mesh operation that they had so I suppose I'm asking for the number of people involved might we not see a much more direct proactive communication strategy detailing the evidence to them in a helpful way not in a pejorative way but in a helpful way and making clear that this helpline does exist rather than leaving it as something that they fall upon by chance I'm certainly happy to look at how we might better communicate with women that in that position I guess we'll have to be quite careful about what that communication says because obviously we don't want to cause concern among women but on the other hand we want to make sure that they have full information should they require to or need to find or if the helpline would obviously be a mechanism for them to be able to find out further information I'll certainly consider that and look at what the options might be. I'm concerned about the coding system that doesn't appear to work as well as it might Neil Findlay's already raised this matter and that could in terms of the further study could there be an analysis by code I appreciate some of these operations apparently haven't been allocated a code from a previous lady witness and therefore is it possible to retrospectively allocate a code to an operation or a procedure and thereafter conduct an analysis of those procedures and to see if there is one procedure or another that has perhaps caused more grounds for concern to see what I'm trying to say. I get what you're saying obviously ISD has already started looking at this and you know they'll be making sure that procedures are coded more consistently going forward in terms of retrospectively I'm not sure whether that could be done or not I get we'll have to find out from ISD whether that's possible if it is it's something we could certainly look at but we need to know from them whether that is feasible or not. It just struck me that it might be a way of gathering retrospective information and therefore allowing an analysis subsequently. Yeah well I could say if it can be done then I think it's definitely something we should look at doing but I just don't know whether it's feasible and we've not had that back from ISD yet because obviously we've they've just they're really just getting their their teeth into this so um we'll come back to you on that. Thanks so much. Can I just before we go on to the next because this has caused me a bit of confusion ISD seemed to be saying that they were waiting on the Scottish Government government then they go ahead to do this and you're saying you have to speak to ISD to see whether you should give them a go ahead something needs to make a decision. No we've got no difficulty doing it it's technically whether it can be done I mean if they can do it they should do it and absolutely get on and do it. What I don't know is whether technically it can be done there's no issue about should it be done if it can be done it should be done what I don't know is technically whether retrospectively it can be done it can be done going forward but whether it can be done retrospectively as John Scott has asked for I just don't know the answer if it can be done it should be done. Angus. Yeah thanks convener good morning cabinet secretary could I go back to the expert group that you were mentioning in your in your preamble just to clarify how quickly the expert group will meet to discuss the report I mean clearly this report just coming out on Friday it won't have had a chance yet and how often will it meet and when it does will its considerations be made public? I don't see why not I think that there should be full openness and transparency around the the work of the expert group and it's got important work to do in taking forward the recommendations we have obviously the final report to receive in the spring of next year so work will be continuing with that to ensure that we get the final report in the spring but in terms of its meeting schedule I mean the meeting schedule is really down to the expert group itself in terms of how often they they have to meet but given they have a number of tasks and not just in terms of producing the final report but in terms of the work going forward that their meeting schedule will have to reflect that. So the the expert group is already gathered together but has awaited this report and I think because of the number of recommendations that quite clearly point to work that needs to be done before cabinet secretary could be happy that in time for the final report that some of these recommendations are taken forward in the meantime so that the group is sitting ready if you like already has worked together and I think these recommendations that can be started work can be started on some of these as soon as that group can can get together to meet. Okay thanks and can I look a little at the the composition of the expert group I mean clearly we heard from the independent review that they had patient representatives on board on the review and I think everyone welcomed that fact at the time. Are there to be patient representatives on the expert group and has consideration been given to a such representation in the future? I understand there already is but we'll make sure that if that needs to be strengthened I think there's the opportunity in the light of the interim report and then obviously the final report that if the expert group needs to draw different expertise or it needs to have more patient voice within it then I think that's something that we could certainly look at and perhaps now's the time to do that in the light of the interim report from an independent review so I think the patient voice around that table is very very important and if the very one feels particularly the women themselves that there needs to be a stronger voice in the expert group then that's not something I would stand in the way of at all. Okay that's great I'm sure that response will be welcomed. No point when the expert group continues its work if a bit more consideration and sensitivity around where it meets when it meets how often it meets accessibility the fact that patient representatives next group are doing it through their own time with little support and go through a very exhausting and emotional time and I think that that should be considered. Can I ask if there's anything in the interim report that the Government doesn't accept at the moment? First of all on the point of accessibility and where and when the meeting's happened I think that's a good point and if we want to look at that I know that there are women who perhaps are from all parts of Scotland who may wish to be engaged in that group in some way so we need to think about that so I'll certainly reflect on what you're saying. In terms of is there anything in the interim report that we don't accept no, we accept all of the recommendations, we do understand however that some of them may take a bit longer than others to implement and you know it's important that we in the meantime though that we get on and the work is done around as much as possible and as I've said already I want to be reassured and certainly the chief medical officer will want to be reassured that before there's any changes to the processes at the moment that the safeguards are in place or and if not fully then certainly interim safeguards and of course we also want to be in possession of the full report before any changes are made. Can I ask if you've read the minority report? Yes I have received a letter from Olive and Elaine pointing that out what I've tried to reassure and officials have tried to reassure them of is that there is an opportunity before the production of the final report to look at their reviews and understand that Leslie Wilkie had tried to in her comments to try to encapsulate the views of women who and their strong opinions clearly though the final report does create an opportunity for that further to be reflected and I would hope that they've had some reassurance on that. Just Dr Wilkie said that she hadn't read it when she gave her evidence however the fact that you have it might be worth sharing with her and maybe if in not too distant future that there is a Government response to that paper which I think would be very helpful in itself. Can I say I'm very encouraged by the Government Secretary that you are willing to consider the issue of contact in those people who have been fitted with mesh devices. I echo Jackson Carlaw, so I think that that is absolutely essential indeed. I think that it's the responsibility of someone, I don't know who, probably Government and the NHS to do that, because I won't ask you the question that I asked the previous people giving evidence but I would just assume that if you or I were fitted with such a device where there was concerns raised that we would want to know about it and I think that's just a simple human instinct that I think we have to deal with. Can I ask in terms of the numbers of people involved what we see particularly from the US I think is very alarming and the potential impact on Scotland's NHS. I've asked this several times in parliamentary questions and not really got any answer. I get a vague answer telling me we understand that people are taking litigation forward but has there been an assessment of the potential financial impact on the NHS of hundreds and potentially hundreds more cases where we see similar cases in the US that are being settled on tens of millions of dollars? Before I come on to that, can I confirm that I certainly will respond to the minority report but also again to take the opportunity to reassure them that there is the opportunity to feed into the final report. In terms of the potential litigation there is 360 cases at the moment but of course the important thing to bear in mind here is that that is on the issue of presumed consent not about the devices as such which is a bit different obviously from the American cases. Now the issue of presumed consent arises out of a case that is entirely nothing to do with this issue but a completely different issue and actually is an issue for the NHS generally because it has set a precedent in terms of presumed consent in many cases therefore some work has been done around the impact of that case on presumed consent cases across the NHS rather than it just being around the issue of mesh because the issue is the presumed consent rather than the device have you seen what I mean so there is without doubt an impact on the NHS from the landmark case on presumed consent that will have an impact going forward and it has led to a lot of change practice around consent not just in the issue that we are looking at today but actually generally that Catherine do you want to say a little bit about that change? My question was has there been an analysis of the potential financial impact that yes or no has there been a piece of work done on that? Not specifically about mesh no but I've certainly received some considerable information about the impact of the presumed consent change so not in relation to mesh specifically but presumed consent which is of course what is at the what the 360 cases are around presumed consent rather than about mesh itself. Could I ask a final question or make a final point? Do you one of the issues throughout this has been that the medical establishment has had a real willingness to believe those who said that this was a fantastic procedure and product and a real unwillingness to believe those who said they had problems and I think that has been certainly in my experience from day one in this and only up until today have we actually begun to see things change. Do you think someone and I'm not necessarily saying it's you but do you think someone should apologise to those women who were not believed and who I think probably there are so many within the medical establishment who still don't believe them? Do you think someone needs to apologise? Well look you know I'm very happy to apologise to the women for them having to basically have the campaign they've had to have to bring it to everybody's attention of course it should never have taken women having to campaign in this way to shine a light on an issue and you know as I've said in my opening remarks I want to thank them for all that they've done and they've created a and left a legacy for other women that will be better for them. Now that's probably code comfort for the ladies sitting behind me but you know absolutely we need to learn the lessons I guess of you know we have moved a long way from what is a kind of paternalistic medical model where you know doctor knows best and you know we have moved a long way from that but there's still a long way to go and that is about informed consent people knowing all procedures all procedures carry a risk and it's really important that patients whoever they are and whatever the procedure know all of those risks whether it's a procedure whether it's medication and you know there is something probably about us getting better at the feedback loop of patients who are out there receiving new you know new medicines or new procedures and of course there's always groundbreaking things happening in medicine where there's new procedures new ways of of treating patients and you know we do need to get better at the the feedback and the making sure that the research of what those patients then experience comes back into that evidence gathering and I think there's we need to be better at that. Good I say thank you for that and I thank you for putting on the record that apology. I wasn't necessarily pushing you to apologise but now that you have done would you join me in asking others who we have come across in this long and very painful process to also step up to the plate and make that apology whether they're from the medical profession itself whether they're from manufacturers or whoever that they actually now accept and recognise that many of the concerns that were raised by these women are very genuine concerns and they were wrong to dismiss them and try to shove them to the side. Well look I can only say what I have said about you know my view of the fact that it shouldn't have taken women having to campaign in this way to have their voice heard and you know whether it's whether it's government listening or whether it's anybody else out there listening I think there is something about us being better able to pick up on things at an earlier stage where concerns are raised and that is something that perhaps again this issue has put a spotlight on that we need to ensure that when concerns are being raised and that there's ways of us picking up on that and responding to it and you know as I said earlier women shouldn't have had to have done what they've done to have their voices heard. Mr Finlay I think that this has highlighted a real issue where there are women with genuine problems, long lasting problems that have come for help and did not receive the help that they should have had from the medical profession. I think that we are moving in a direction of more openness and transparency and I would hope that this interim report and the subsequent final report allow us to move that direction much further forward in Scotland because of this big issue of informed truly informed consent and I think that we have already come some way because we do listen to women we listen to patients more than perhaps we did in the past but these women have been injured by something that the medical profession did albeit perhaps with the best intentions but not with the best information and so I would reiterate the apology that cabinet secretary has said to the women behind me here who I've met and got to know over a period of time but also to the other women who aren't here but who have been part of this campaign. Okay thank you very much cabinet secretary and thank you Catherine for your evidence as well and it's been as I said at the outset I was made aware of how distressing an issue this was for those who have been involved in it and I can tell from sitting here this morning with almost two hours of evidence that the faces of those who are sitting behind you just how distressing this is for them. We have not completed our work on this just as the working group and the expert group have not completed their work but we should take the time to consider what we've heard this morning and I would suggest that we come back to another meeting of the committee to review the evidence that we've heard and decide how we as a committee will take that forward and I'd obviously welcome Neil Findlay and John Scott's input to that if they want to contribute to that on-going discussion that would be most helpful to us. We'll take on board everything that we've heard and we'll obviously contact those who we need to speak to but it just leaves me this morning to thank the cabinet secretary and all the witnesses who have come this morning to discuss the interim report with us. I would like to thank everyone who's joined us in the public gallery this morning. I know that this has been difficult for you but on behalf of the committee thank you very much for all that you have done to raise this issue and I'm sure you'll continue to do that. Just to add to Jackson's message earlier to Marion Scott, a good example of where the media can be a very positive benefit to those out there who need their voices to be heard so congratulations Marion on championing this, this cause on behalf of those who've been affected and with that I'll suspend the meeting again so that we can change witnesses. Next item of business this morning is consideration of PE140 by Amanda Cappell on behalf of the Frank Cappell Alzheimer's awareness campaign on Alzheimer's and dementia awareness. Again members have a note from the quarts and submissions around this petition. Again I'd thank Shona Robison for staying with us, the cabinet secretary, for health, wellbeing and sport. I appreciate her taking out so much time this morning to help us look at the petitions we have before us. The cabinet secretary is accompanied by David Folleringham and Mike Wittle from the integration and reshaping care division of the Scottish Government. Again cabinet secretary I'll invite you to make some opening comments and then we'll go to questions on that. Okay thanks convener, certainly welcome the opportunity to come back to the committee today and to speak about social care and in particular Amanda Cappell's petition on charging and dementia awareness. I've met Amanda to discuss her campaign on a number of occasions most recently on the 25th of September and I would certainly pay tribute to her tenacity on this issue in memory of our late husband Frank. At the meeting that I had with Amanda recently I explained some of the work that we as a government have been doing to improve the fairness and consistency of charges for social care. Over this year my officials have been working with Professor David Bell from the University of Stirling to fully assess the costs involved in a number of different scenarios around social care charging. We've completed that work and we're now using its findings and looking at the budgets for the spending review period. I'm working out precisely what the best options are to make the system of charging for social care fairer in partnership with local government. That is at the heart of any changes that will make. They have to be fair to everyone with a long term condition that requires social care. Amanda has widened her petition from its original focus on those with Alzheimer's and dementia to those with other degenerative diseases such as motor and neuron disease and we have to ensure that any charging system would be for people born with a range of conditions, not just those that I've mentioned. Any changes we make to the charging system has to be fair to all service users and that's the focus of our attention. They also have to be sustainable. We can't make changes to the system now without ensuring that they will be affordable down the line. In addition to the work that I've already mentioned we have over the course of the past year worked with our partners in local government to ensure that some changes have been made such as those who are assessed by their doctor or consultant as being in the last six months of a terminal illness or not charged for the care they receive at home. That has been an important step forward in improving the fairness of the charging system by ensuring that those who only have a short time left are able to spend time with their loved ones without worrying about paying bills for social care but there is more to do and as a government we're treating this issue as a priority and we'll be looking at the best ways to improve the fairness of the charging system for all service users. Okay thanks very much cabinet secretary. Let's take the kick off. In principle do you support the aims of this petition? In principle I think the petition is calling for something that I agree with which is a fairer charging system but what we can't do is to do it for only specific conditions because you'll understand that if we were to say so we're going to have a fairer charging system for this list of conditions there would be another list of conditions of people saying wait a minute that's not fair so what we've had to do is to and what we are doing is looking at how can we make the system fairer for everyone so you know the bones of the petition is about a fairer charging system and that's absolutely where you know Amanda Coppall will get agreement from me we need a fairer charging system. What we're working on though is what that should look like because you'll appreciate that there are various different things we could do there are various different models what we need to do is to come up with the fairest one the best one the the most sustainable one and of course we have to get agreement from local government in taking that forward. I understand that that's a consideration that we always have to make I mean we we can't if everything was a priority nothing would be a priority but we do have priorities there are lots of areas within the health service within social services where you know support is given to one group within our community but it doesn't apply to others we have to make those choices they're difficult choices but they're choices that are made on a regular basis could we not accept that in the case that's brought before us an example that's given that this is an area that requires priority and that while there might be arguments for other areas we can hear those arguments but if we accept the principle in relation to Alzheimer's then we can deal with that problem and move it forward. I my worry would be that if we were to say for example that we're going to have a fairer charging system but only for people with Alzheimer's that that could be legally challenged by someone with another condition it would say well why why have you selected only people with Alzheimer's in the dimension I think to be fair to Amanda Cople she's recognised that and that's why when I met with Amanda recently she talked about people with with life limiting conditions that she recognised had to be broader than just people with Alzheimer's or dementia and that's why our focus is on looking at how how can we bring and reform the system and make it fairer while but to to all service users who are currently having to to pay charges. Okay and these considerations have to be made and as I said we accept that how long do you think it will take to finalise your deliberation? Well we're in the middle we're just in the midst of the spending review period obviously we are waiting we've not we've not heard as yet we won't until November in terms of what our budgets will look like from UK government decisions but in advance of that there is a lot of detailed work going on around the priorities for social care that will form the and are forming the basis of the discussions we're having with local government and there are three elements to that one is fairer charging the other is progress on living wage and the other is around capacity social care capacity and you'll appreciate these are all issues for social care and it's about making sure that we can move forward on all of those issues but we need to get agreement with local government around that and we need to make sure that within the context of the spending review that we can not just afford it for one year but we can afford it for the entire spending review period. Again and accepting these are all very difficult decisions we differentiate between some conditions and others in a whole host of areas but we also differentiate within those conditions between people of a certain age and another so if we can differentiate within illnesses and conditions you understand that there's an argument then to say that that could be challenged you know that if you're over a certain age you can benefit from a financial support but if you're below a certain age you don't that could be seen as discriminatory therefore allowing someone who has a particular condition to receive support but someone with a different condition that's equally a judgment that has to be made at some point I think it would be very difficult to I mean you you as a committee would no doubt be sitting with people in front of you saying hang on a minute you've made personal care free for those with Alzheimer's dementia what about multiple sclerosis what about botonuron disease what about cystic fibrosis and before long you would have a petition for looking at and saying that this isn't fair so rather than wait for that to happen I've taken the approach that any changes to charging has to be on the principle of fairness and apply to to to everyone who would be entitled to receive care I think otherwise we would get into a very difficult position and as I said earlier to be fair to Amanda Coppill she's recognised that herself that you know you have to look at other degenerative conditions that are life limiting you can't just just look at one okay Jackson thank you cabinet secretary actually I think the case is you outline it is reasonable and I understand what you're saying but can I just be clear in the work that you've done have you now am I am I right in thinking you have now isolated or is it the case you have isolated a series of conditions that you think that this new charging regime would apply to in order for it to be fair and that what you are now waiting on is the budgetary confirmation as to whether you can go forward or are you saying that the budgetary confirmation would determine the list or the inclusivity of the basket of conditions if I can refer to them that way for which this new regime would apply or are you saying that it would just have to be a universal thing that irrespective of the condition it would have to be available for absolutely everything or are we talking about these kind of particulars I'm not just quite clear what you're trying to narrow down here we're trying to avoid lists of conditions so we absolutely don't want to to do that because I'll always be one missing and that will be the one that will be the next petition to your committee and you know to me to say that's not fair so we're trying to avoid that scenario where we're trying to get to and of course you people would always have to meet eligibility criteria for care so this would always be about people who require care rather than have a condition and want care it would always be around the eligibility and requirements for for care and so that that it will will always be there and what we're trying to get to is a position which is fairer to everybody who at the moment have to pay charges that are can be considerable in some cases and for those who are under 65 that can be quite challenging and there are various ways though that charging can be made fairer you can look at free personal nursing care for under 65 but you can also look at the threshold at which people start to pay charges so there are various models and ways of making charging fairer what I'm saying to you is we have not reached our final conclusions on what is the best what we can get agreement with local government around to deliver and what is sustainable and affordable so where the bit we're in at the moment is looking at those various options and discussing those further I think what you if I'm are then understanding it it would be a kind of universal provision subject to the eligibility criteria not actually specifically condition related because you want to avoid that I think the threshold thing is actually the subject of another petition that that we've been pursuing and which has been with local government for quite some time as I recall but that's not necessary for today so I suppose I am sort of come back to where the convener got to as to when you would expect to see progress made now you've identified budgetary constraints this year is that the point at which we would know what you would know what you were going to be able to do or is that in itself not going to be the point at which you feel you'll be able to come up with a with a you know with a decision as to how things would progress well what what we find out what we decide to do in the policy decisions we make will be part of the spending review and those announcements will be made in due course I guess the problem at the moment is we can anticipate and we can make decisions about what we think will be the landscape but we're not entirely sure of what that landscape looks like until decisions are made elsewhere and we know what budgets are but but despite that we will be reaching positions about where we would like to get to and what our priorities are within that spending review and obviously that spending review is a process is is one that is quite detailed and you know it involves not just my directorates but is a dialogue with local government and the dialogue with other directorates and government as well but work has been done on this quite considerable work actually to form the basis of how we make those decisions but there are choices to be made within that about what what options we choose and all of those have merit but some of them you know perhaps have more merit than others and we need to come to our final conclusions on that. From what you're saying then would it be reasonable for the committee to expect before Parliament suspends at the end of this parliament next March that we would have an understanding as to what the government felt it was going to be able to do? Absolutely. I think that that's been helpful cabinet secretary I don't have any other questions the committee don't appear to have any other questions I think what we should do though is we to another future meeting so that we can collect information and get a decision made on how we we take forward the petition is that okay? Thanks cabinet secretary and thanks to your officials for joining you. I'll suspend again for a few minutes to allow the cabinet secretary to leave. Next agenda item is agenda item 4 is consideration of seven continued petitions. The first continued petition is PE1533 by Jeff Adamson on behalf of Scotland against care tax on abolition of non-residential social care charges for older and disabled people. Members have a note from the clerk and other submissions for their perusal. The members have any suggestions on how to take this forward? I kind of feel the cabinet secretary indirectly referred to the very matter and the evidence she just gave because it would seem to me that this is part and parcel of the broader review that she suggested was underway which she talked about thresholds and other issues too. So I think it would certainly be sensible just to remind the cabinet secretary that we would like to ensure that this is incorporated in anything that comes out of that work that's being done. I agree actually with Jackson I think we're coming into an election period I think what might be useful is just some indication of where they're at in terms of their own table discussion. What the ballpark figure is because at some stage people are going to have to make a decision as yourself said, convener politics is about choices. So some clarity I can understand they've got to do the number crunching but at some stage it would be useful for the numbers that are crunched to be available for all and thereafter people can see what the basis of either the manifesto from the government party or indeed alternative manifestos would result in. Joined the two petitions for future consideration at this committee, 1480 and the competition in front of us because they are I think as Mr Carlaw has outlined very similar in terms of objectives and it would be useful to if we're going to get because clearly we're going to get a report out there there from the cabinet secretary so it would be useful to consider the two petitions at the same time. Okay, are we happy with that? Next petition is PE1549 by Alan Clark Young on concessionary travel passes for war veterans. Again members have documentation around that if they want to make any contributions. I think it is interesting that there is a similar type of project running in London through the the oyster card which seems to address the the issues being brought by the petition. It might be useful to get information on that in terms of costs and other considerations that they had to make before introducing such a programme that might inform us in terms of how we could take the issue forward. It's okay. The next petition is PE1554 by Jack Kelly on behalf of Leonard Cheshire disability on improving the provision of disabled friendly housing. The Government's position is on it. I mean there may again be cost implications that make it unaffordable. There may be technical matters so I think simply out of courtesy and indeed desire for all appropriate information asking for qualification would be appropriate. Similar to Kenny MacAskill just to ask the Government what would be the implications of putting two new standards in the building regulations to incorporate lifetime no disability facilities and being going into new homes. We are seeing a growth in the number of socially rented houses that are being built and it would be useful to know if the Government are working with local authorities and other social housing providers to ensure that they're actually making adequate provision within the new build stock for disabled access and other adaptations to be incorporated in the design of those houses rather than trying to retrofit a later date the housing stock, particularly the new housing stock that has been built. Our next petition is PE1563 by Doreen Goldie on behalf of Avonbridge and Standburn Community Council on sewage sludge spreading. The members have any contributions? Yes, thanks, convener. Clearly the petitioners have responded to SEPA's response and they do raise a few more questions which I think the committee should perhaps follow up with SEPA. There are some salient points here that need clarification and SEPA are the ones to clarify so I would suggest that we get back to SEPA to seek some clarification on the points raised by the petitioners. Also the Scottish Government, because we need some detail as to when the findings of the sludge review and the Scottish Government's response will be made public, so both the Scottish Government and SEPA. That seems to be agreed again by the committee. The next petition is PE1565 by James Dugo on whole-of-life sentences for violent re-offenders. The process of being established, but it is soon to be there. I know we have sent them other matters to look at, but it seems to me that this is something that should be part of the workload and the appropriate venue for it. The next petition is PE1566 by Mary Hemphill and Ian Reid on a national service delivery model for warfaring patients. Colleagues, do you have any comments to make on that? I would appear that people who know better than me have suggested that the University of Birmingham primary care department are involved in this and it would be useful to contact them to get more information that would inform our considerations of the petition. I am pretty happy with the recommendation made. The final continued petition is PE1568 by Catherine Hughes on funding access and promotion of NHS Centre for Integrative Care. I think that the members have had a chance to look at the paperwork around this, and I am more familiar with the discussions around this petition than I have been up until now, so I welcome your recommendations on how to deal with it. Is it worth going back to the Government to explore some of the areas that have been raised? I would be keen to go back to the Government and explore some of the issues that have been raised by the petitioner, but with the committee's indulgence I think it may be useful to bring in a couple of health boards to discuss and ask questions about the decisions that were made to withdraw the funding for the integrated care provision. The difficult way is that the service can only continue if the individual health boards contribute to it. As we know from the petitioner and others, a number of health boards have now decided to withdraw the funding and not make any new referrals. Ongoing referrals will continue as long as they are required, but there will be no new referrals, and particularly Larnacher health board is one of those. I would be interested to hear their views as to the process that they took to make the decision to withdraw the funding and what alternatives they have put in place for patients who have identified that type of treatment path. Clearly, the petitioner has indicated that not only has Larnacher health board decided not to continue to make new referrals, but they have decided to close to the clinics that were provided in the health board area. It might be useful to question the health board in those areas and to find out so that it can get a better idea and question the Scottish Government's earlier data about how it would envisage that national centre continuing to deliver services for the whole of Scotland if local health boards are withdrawing the funding. I have a slight concern, and it is that we are bordering on, I think, finding ourselves entering into a much larger inquiry on the merits of homeopathic care. I am not sure that, if that is our intention, we would have to understand that that is what we were doing. The Government does not have a policy on homeopathic care. There are no national guidance to health boards on homeopathic care. I am slightly uncertain as to whether that is for this committee to do or whether, if we felt that it was appropriate, such a review should take place, it is not something that should not be remitted to the health and sport committee to undertake if they felt that that was appropriate. Do you think that we are at that point? I understand where John Wilson is coming from. I am slightly nervous that, once we start bringing health boards in, we are going to be asking them why they are not doing it. I can see, inevitably, that we are going to then get into an immediate discussion as to whether or not they believe in homeopathic care, because, presumably, they do not if they are not. Then we get into the unevenness of the way in which homeopathic medicine is treated across Scotland. That is quite a big job of work. I am not sure that it is not a matter that the health and sport committee has, in fact, discussed it in recent times or not, but it seems to me that, if such a review is going to take place, it is more appropriately led from there than from here. I think that that is where I would feel. I do take on board that point. Equally, if we are trying to understand, it seems to me about funding and access, not about whether there should or shouldn't be homeopathy at the moment, but I can understand what you are saying, Jack. We could start to stray into that territory if we start to analyse the health board's attitude towards homeopathy, but it might be useful to get the views of Highland health board and Lanarkshire health board as to what drove their decisions, if we have not already obtained that information, and see where we go. We should continue this, but try and get more information just to inform the committee about the types of decisions that had to be made around funding. Is that okay? Do you think that that would prevent us from going too far into the— That is your discretion. I am not being prescriptive about this. I am anxious that—I do not know that I am inclined to see the committee immerse itself to that. I think that it goes slightly beyond the terms of the petition. If we stick to the funding, because it is about funding and access, and if we ask them to explain the funding decision, but purely that, I think that we stay within the boundaries of the petition, we are not asking about whether they support or not support homeopathy. I think that health boards might support a lot of procedures, but they cannot afford them. If we stick to the considerations around funding, we are not asking that we debate the merits or otherwise of homeopathy. Is that okay if we write them in those terms? Is that okay? There are three NHS boards, not just Thailand and Anarchilus, NHS Lothian as well. That concludes the public part of this morning's meeting. We are now going into the private session to debate agenda 8, 5 and 6.