 That is the 10th meeting of the Public Petitions Committee in 2018. Can you remind members and others in the room to switch phones and other devices to silent? I also indicate that we have received apologies from Angus MacDonald this morning. The first petition for consideration is P1545 by Anne Maxwell on behalf of Muir and Maxwell Trust on residential care provision for the severely learning disabled.�REBECG will now be considered by that byt Manly Gwyrdwyd and accepted by כל gazリag i fen Чтобы to section five to put the cowdr and reporting of the disability and how to provide information about the fact of the work in the 60% of people with profound learning disabilities having this condition. The petitioners of the view that residential care would resolve many of the issues that the observatory is currently researching and suggest that the financial consequence of inadequate care for the profound learning disabled should be a focus of the observatory's work. I wonder if members have any comments. Focus on the fact that the petitioner is saying that not enough emphasis has been put on the epilepsy question and just some of the points that they raise about what the work has been undertaken by the observatory. I think that we need to tease out a wee bit more just to find out in detail what's been done. I mean, I was quite struck by the argument because you can see that over time and quite rightly the idea that if you had a learning disability you went into long-term care and the policy has quite rightly changed and has been a massive benefit to people who have been able to live in the community, work in the community, achieve their potential. It almost feels as if, because of that policy, it's not appropriate to have residential care in certain circumstances and that while you wouldn't want the general rule to be that, I think that they make quite a strong case for a community where people can be supported and resources and support can be brought round about them. I mean, I agree with you on this whole question about exploring further. Are they looking at the question of epilepsy and why not? I was going to say something similar, convener. I was going to say whether or not the pendulum swung too far the other way and that the option of residential care is now limited. I think that's something that's certainly worth exploring and I also want to look at maybe the financial consequences of that sort of... I don't want to say inadequate care, but the options are one against the other. What are the financial consequences of one against the other, perhaps? I think that the petitioner does make the case that there are financial consequences if not, perhaps, but making this provision available in certain circumstances, because further along the line there are consequences for the individual and I think that that would be something that we could look at. I agree that there was a point about the Scottish Government measuring the demand for long-term residential care based on the current number of children and young people in residential care. It makes the point that it's flawed way of measuring demand and fails to capture the true need that currently exists in Scotland. I wondered if that was the methodology of calculating the number of people currently taking up residential care places. Is that affecting that as well? If the facility is not available, then you're ignoring demand in a sense or you're not searching it out, I suppose. Are we agreed then that we would ask the Scottish Learned Disabilities Observatory about its work in relation to links with profoundly disability and epilepsy and to look at the whole question of the financial consequences of what's seen as, if not inadequate, inappropriate, perhaps, or it's not totally supporting a person? Is that agreed? In that case, if we can move on to the next petition for consideration, which is petition 1591 by Catriona MacDonald on behalf of SOS NHS on major redesign of healthcare services in Skai, Lochalsh and South West Ross. Rhoda Grant, Kate Forbes MSP and Edward Mountain MSP, who have attended previous meetings at which we have considered this petition and are not able to attend today, but I have provided some comments to which I will refer shortly. We previously agreed to defer further consideration of this petition until the external view by Sir Lewis Ritchie on out of our urgent care and minor injury clinical services had reported. That report was published in May and a full copy is included in our meetings papers. The clart's note identifies the theme and key messages within the report about the need for NHS Highland and the local communities to work together, which has been regularly highlighted during our consideration of this petition. The petitioners have provided a written submission in which they indicate a willingness to engage in co-production with NHS Highland and others to help to deliver some of the key recommendations in Sir Lewis Ritchie's report. Rhoda Grant has indicated that she would like the petition to remain open until the six-month review of the key themes identified in Sir Lewis Ritchie's report has been completed. Edward Mountain notes that this is a long-standing petition of great importance to people of Skai and Wester Ross, which came about as a result of the actions of NHS Highland, which he says were far from inclusive. He considers that Sir Lewis Ritchie's review has been a significant step forward and has managed to reunite the majority of the community. He adds that however remains a genuine fear that NHS Highland, although accepting the report, will revert back to its original position and will not implement all the findings. I have been asked by many to speak to this petition and to ask the committee to keep the petition open for a further six months. While I know that the committee may feel that the matter has been dealt with, it would give my constituents confidence in the political system to know that it was not closed. Kate Forbes has indicated that I offer my apologies to the convener and to constituents watching at home for being unable to be here in person. We have made huge progress since the last meeting, with Professor Sir Lewis Ritchie's report stating unequivocally that Port Tree hospital should remain open with a resilient 24-7 emergency care and beds provided in the north end of Skai. The priority now is to ensure that this happens until it is implemented through I would ask the committee to keep the petition open. I think that having in my constituency work done a few constituents where there was a sort of review and recommendations done and then them not necessarily being implemented in full or no need for them to be implemented in full, I am inclined to agree with our colleagues right and submission that for fullness we should leave the petition open for six months and revisit to check against the recommendations that have been implemented. My opinion is that we go with that and leave it open for the six months. It is clear that the decision has been made on the restructuring and that is not going to change so Edward Mountain is right. It has been dealt with, but it is good that progress has been made on the collaboration between NHS Highland and the community. That is really good news, but I agree with Brian. I think that we should keep it open for six months until Sir Lewis Ritchie can come back and just update us with progress in that report. I think that it has been such an important petition and I think that another six months would do it justice. I agree, convener. I think that it would give us reassurance that significant progress was being made with that review. I agree with the committee that we keep it open for another six months. We should ask the Scottish Government to provide its views on the findings of the review, particularly with regard to the recommendation that should seek regular and robust assurance that satisfactory progress is being made. Perhaps ask the Scottish Government how it is intending to do that. In that case, we are agreeing to ask the committee to keep the petition open for another six months and not give us an idea of whether Sir Lewis Ritchie's review is being attended by the health board. In that case, if we can then move on to the next petition for consideration, which is petition 1627 by Annette Mackenzie. At our meeting on 29 March, we discussed a suggestion that was made by the petitioner to introduce the use of written consent forms for young people who have been prescribed antidepressants and asked the minister for mental health for a view in that suggestion. The minister is of the view that the introduction of written consent forms would undermine the whole concept of capacity and confidentiality and could be considered discriminatory towards young people as well as creating inequity between mental and physical health. Members will recall at our meeting in March that we reflected in the outcome of a survey conducted by the Scottish Association for Mental Health in 2014, which found that GPs would like more information about non-pharmaceutical treatment options for common mental health problems. Almost half of GPs are not aware of or not sure if they are aware of the Scottish Intercollegiate Guidelines Networks guideline or non-pharmaceutical treatments for depression. We therefore asked the minister for mental health to reflect on the findings of this survey and how it intends to promote the sign guideline to all GP practices in Scotland. In a written submission, the minister states that the Scottish Government is currently working with the Royal College of GPs, the Royal College of Psychiatrists and the British Medical Association to provide information for GPs on training and guidance on non-pharmaceutical treatment options for common mental health problems. To promote to the relevant sign guidelines, this information is expected to be sent to GPs by the end of June. Our meeting in March, we agreed to ask for information about the work of the Youth Commission, led by Young Scott, to explore the potential for people aged 18 to 25 to continue their care within child and adolescent mental health services. We also agreed to ask Health Care Improvement Scotland about its work to improve child and adolescent mental health services redesign with individual NHS boards. Responses have been received and this information is set out in our meeting papers. Since our meeting in March, members will recall that we also considered this petition in private on 10 May to reflect on all the evidence that we have received to date. I wonder if members have any comments. It is fair to say that this petition has exercised this committee more than most and infected. It is a hugely important petition. We have all along recognised the tension between confidentiality and exploring somebody with mental health issues' capacity to administer medication, especially under 18s. It is something that I have wrestled with a lot. I indicated to you before that, in the Health and Sport Committee, we have been doing some work around this. It opens up a whole can of worms for me. What would be really interesting for me would be to hold some sort of inquiry with and ask young people how they access mental health services, what they feel mental health services should look like. I happened to be with a group on Monday who had poor mental health and it was quite eye-opening as to their understanding of what mental health services should look like, their interaction and various experiences with GPs and mental health services. That would hugely benefit the Parliament's understanding of how mental health services are currently being accessed. I suggest that we look at holding an inquiry into how they access mental health services. I have to say that I was quite disappointed in the minister's response to the whole question of written consent. It is not a question of discriminating, but we are wrestling with a dilemma and a major problem. There is an issue about being confident, at minus and best practice, as you do not offer medication, for instance, unless there is a crisis. The default position was that you would look to other therapies first. I am interested perhaps through the inquiry in establishing whether GPs are under such pressure that they do not have the time to go through that and perhaps end up feeling the need to prescribe rather than anything else. I also think that what would be routinely regarded as a thing to say to a person with a physical condition, to make sure that they get support from home, if they have had a terrible diagnosis of a cancer, presumably you would be encouraged to tell your family that somehow there seems to have been inhibition in this regard because it is mental health. We are almost tipping it in the other direction. Everybody is alive to just how serious this is for families and the impact it has where there are tragic circumstances involved. Perhaps ensuring that young people themselves are part of that conversation would be very interesting. I think that it is such a significant issue and it is complex. I find it hard that the whole system is hard to understand when trying to help constituents or families who come to you with problems just to navigate the system and to signpost them in the right direction. It really is difficult. I think that an inquiry to get these things discussed and the young people involved is definitely necessary because the process for helping young people with mental health issues is not easy, it is difficult. It would be that it is a long time to wait. I see that the commission will intend to report the findings to the minister of Scottish Government in March 2019. It is a long time to wait, in my mind, because there are people out there at the moment needing treatment. If there is any way of speeding this up, it would be fantastic. Why does it have to be such a long process? Currently, there are complicated pathways to receiving the right treatment. I think that the point about helping our constituents is really key because GPs currently use CAMHS, the CAMHS service. Are they using that to the best effect? I think that this is a really important subject and I just think that if we could do anything to speed it up, I would be behind that. Brian Whittle Just mentioning CAMHS and the understanding that the change between youth and adult services has also been highlighted as a major issue. I think that the petitioner's daughter sits in that age group. As part of that, I would really like to look at how that system of changing from childhood treatment to adult treatment is delivered. That is one of the things that the commission in particular is looking at. Can I suggest that we agree that we would wish to hold an inquiry on how young people can access mental health services and treatments? We would ask the clerks to produce a paper for the future looking at what that inquiry might look like and what kind of timescales that would be. We will be agreeing to do that with a bit of scoping work in private at a future meeting. In that case, if we can move on, the next petition for consideration is petition 1631 by Mori McVeigh on child welfare hearings. At our last consideration of this petition in March, we considered a suggestion made by the petitioner to use fixed specialist family law courts for child welfare hearings and sought the Scottish Government's view in relation to the suggestion. The Government highlights that the Lord President has the powers to determine that family cases be heard by specialist family sheriffs, but it advises that a number of matters would need to be considered before making this decision, as outlined in our meetings papers. In her written submission, the petitioner asks whether there are criteria for the Lord President to determine when and in what child contact cases that happens. Members will recall at our last consideration of this petition that we also considered a recommendation made to the Scottish Civil Justice Council from independent research commission to use note sheets to ensure information flowed between sheriffs in situations where scheduling meant that the same sheriff was not able to remain with the case. We therefore agreed to write to charities providing advocacy and support to children for their views on the current practice of recording discussions at child welfare hearings. The Scottish Child Law Centre is supportive of the idea of note sheets, stating that they would improve the quality of decision making, promote and safeguard the best interests of the child. However, they also highlight that note sheets should only be used to facilitate information flow between sheriffs and should not compromise judicial impartiality. In striking the appropriate balance between recording discussions at child welfare hearings without it being overly burdensome, the law centre suggests that it would improve the child welfare hearing process for sheriffs to provide a written account on the basis on which their decision in the child welfare hearing is in the form of a child welfare hearing decision note. The petition is supportive of the suggestion. Members may also wish to note that there are currently two consultations under way that are relevant to the petition. The first is a consultation by the Scottish Civil Justice Council on a report by a sub-committee on case management of family actions. The second is a consultation by the Scottish Government on a review of part 1 of the Children's Scotland Act 1995. Both consultations closed in August 2018. I wonder if Members have any comments on what we should now do with the petition. I do not think that we should defer it until the close of the consultation by the Scottish Civil Justice Council because I think that there are things that we could do now. I would like to see as soon as possible some positive outcome from the petition. I think that the question and the criteria of whether or not a case is heard in a family court and what is used to determine that until contact. We need some detail from the Lord President's office, so I think that we should ask what criteria they are using in this instance because it is not clear. I think that the Scottish Law Centre's support for notes was interesting and could be a positive development, so we should ask the Government to respond to that. I agree with that. I think that it was quite odd to the idea that the somehow recording or having a note of a discussion was going to somehow inhibit judicial and partiality later stage. I thought that, in any walk of life, you have a set of notes about a case and you follow it through. I think that the point in the very original petition was that people should not have to keep retelling the story or misrepresentation of what was discussed previously. That is why it has taken such a long time to get through some of these cases. I think that we are agreeing that we would want, as Ron has indicated, the issues that we could pursue just now about how it is determined what family cases are heard in the family courts and the suggestion about the child welfare hearing decision. No, I am trying to get the Scottish Government to respond to that. Is that agreed? I am going to suspend briefly before we take the next petition. I can call a meeting back to order and move to the next agenda item. Our first new petition for consideration today is petition 1690 by Emma Shorter on behalf of ME Action in Scotland. I welcome Ben Macpherson and Mark Ruskell MSP to the table for this petition. I should also indicate that Alec Rowley MSP has expressed an interest in the issues highlighted in the petition, which were highlighted to him by a constituent, and he has indicated to be interested in following the deliberations of the committee in regard to his petition. We will take evidence in his petition from Emma Shorter and her mother Janet Silvestre. Emma and Janet are both volunteers with ME Action in Scotland, also attending as Professor Chris Ponting, chair of medical bioinformatics at Edinburgh University and deputy chair of the UK CFS ME research collaborative. I welcome to you all and thank you for attending this morning. You have got the opportunity to make a brief opening statements of up to five minutes and after that the committee will ask a few questions in order to help to inform our consideration of the petition. Thank you for this opportunity to give evidence today. I really appreciate it. I just want to start by saying that if I have difficulty speaking or trouble with comprehension or anything like that, I will just deteriorate until I have trouble moving or speaking, so I have organised to do a time-out sign, and my dad will just leave. I apologise, and I am sure that Chris and Janet will be able to answer any questions. Our petition is about myalgic encephemiolitis in Scotland. There are over 20,000 people with this disease in Scotland. It turns fit and active people into ghosts. Activity becomes not running and climbing but trying to wash your hair or make a cup of tea. I know teachers who can't teach children who can't play and parents who can no longer hold their children. Some patients are too ill to move or speak at all, and I have a friend who has been bedbound for over 25 years. Over five years ago, when I was in my first year at St Andrews University, I went from hill walking and hockey playing to struggling to move my hand to lift a glass of water. I was lucky in that I was diagnosed really quickly, and I saw a doctor who told me that he was one of the most knowledgeable doctors in Scotland. There had been recent evidence that cognitive behavioural therapy and graded exercise therapy could help any patients recover. A new clinic had just opened up in Edinburgh, and I would be referred there right away. He said, most patients get better in two years, and the ones who don't take the illness on are their personalities. My parents and I couldn't look anything up on the internet or join any support groups or meet any patients because that could maintain the disease. I started at the clinic, and it started off really helpful. It was meditation and rest, and then it turned into, if you're happy, you won't get better. You have to focus on nutrition and sleep, but you can't focus too much on it or you won't get better. All the symptoms were a manifestation of your emotions, and you had to trust the therapist over your own body. I had to walk, and you had to increase walking by 10 per cent each week. As I began to get sicker and sicker, I was told that this is the moment where you push through and you get better. I started the clinic being able to walk about four minutes each day. I ended, and I needed a wheelchair. I went back to my physio. I went back to my doctor, and they said, congratulations. We're so glad we helped you recover. There is no other treatment, and when I said, I appreciate your help, but I've deteriorated during this treatment. The response from my consultant was, well, did you ever think that you just didn't try hard enough? He referred me back to the clinic. There is objective evidence of abnormalities in ME patients from immune, nervous, endocrine and, crucially, energy metabolic systems. Some researchers use exercise as a way to aggravate symptoms in order to study the disease. It is so distinct that it was recommended that it was named systemic exercise intolerance disease. CBTGET remains the only recommended treatment for patients in Scotland, and that is why we are here today to ask for these therapies to be removed. We are also asking for more. We are asking for care, because there is only one specialist ME, a nurse in Fife, and if ME patients are given appropriate advice and diagnosis, it may stop deterioration and give us the best chance of improvement. We are asking for education of healthcare professionals, because becoming unwell is compounded by the disbelief and dismissiveness that we face by doctors, and it is unfair to expect them to treat us without up-to-date training. The urgency of this can be seen in the treatment of children. In a UK survey last year, a fifth of patients reported child protection referrals being made against them. ME is the main term of long-term sickness absence from school, but because healthcare professionals do not understand how children can remain so sick for so long, they start blaming the parents. That is why we need to review the curriculum and update training materials. Finally, biomedical research, because for some of us there is no future without it. I know that the Scottish Government has recently given £15,000 a year for three years, and this is great, but I hope that it is just a start. ME research has been underfunded worldwide for decades, and we have world-class researchers here in Scotland, like Professor Ponting, who are willing to study us. If Scotland invests in biomedical research and creates a centre for ME, we will not only be changing the lives of patients in Scotland, but we will be leading the change internationally. Thank you for seeing us today. You have already said that the first action that is identified in your petition summary is investment in biomedical research, and in your background information, consider that the funding should be proportional to disease burden. We understand that the Chief Scientist Office has announced funding of up to 90,000 over three years towards a PhD studentship in this area to be led by Professor Ponting. I wonder whether you consider that level investment as proportional to disease burden. I am grateful indeed for the £15,000 a year that is going to be put forward for three years for this PhD studentship. Half of the money is going to come from charity, and it will allow us to perform our first experiments on ME. However, there are, as Emma said, more than 20,000 people living with ME in Scotland. Therefore, the amount of funding is about £1 per person per year for three years. I do not think that that is proportionate. For example, it is at least as disabling as disease as multiple sclerosis, but it receives per person less than 20 times the amount of funding that multiple sclerosis receives. People with ME, as Emma has described, have a very low quality of life compared to any with other disease such as rheumatoid arthritis, cancer or even congestive heart failure. People who are most severely affected get the least care and the least attention, the least funding. That marks out ME as different from anything else. Do you have an explanation for why that is? We do not know what the causes are. We need to find out. There is no funding that comes into what the causes are because we do not yet have hypotheses. Without hypotheses, the funders are not persuaded of the argument. Emma, you have indicated that you contacted the health minister or the health minister has been contacted on this issue. Did you raise the subject of a centre of excellence with her at that time? I contacted the health minister on Emma's behalf and we did not raise the subject of the centre for excellence. We were talking about specialist support for patients and the need for investment in research, but not specifically looking at the centre for excellence. If a centre of excellence was to happen, what would you give us an idea of what you would like to see? I think that we need to generate the hypotheses that will fire the starting gun on research. That means that we need to buy a bank, people, there are DNA, there are buyer samples. From that, we can determine what are the genetic contributions. We know that there are genetic contributions and that it is a real genetic illness. We need to have experimental medicine programmes using the substantial enthusiasm that there is in Scotland from people with ME to contribute to science. We need to be innovative in terms of how we do the science, including using wearables, accelerometers and phones to allow us to measure how well poorly people are doing over the day. I will ask you, from what Emma was saying, is it your impression that clinicians do not agree as they are mixed opinions on diagnosis and on treatment? Is that the general situation just now that there is no common framework or agreement on either diagnosis or treatment? There was recently a meeting of international experts for care in America. They came with an agreement that they agreed on diagnosis and care, and they are planning to publish a paper later this year. I wonder how that can be done without the appropriate research, having done what you are talking about. How can it be agreed when so much is still to be learned and should have been by now? That is my opinion. I think that the issue here is that they are looking at how to best support people with ME and to give them the treatment to deal with the disease, rather than approaching a cure for it. Oh, it is managing the disease, not treatment, sorry. That is what I meant, apologies. Okay, that is fine. That is an answer to the best practice in management, which is being led from the state that we need to roll out in Scotland. Okay, thank you. Thank you for bringing this to the Petitions Committee. You have provided references to a range of studies in your end-notes of the petition, and you also referred to the PACE trial. Given that one would expect research to inform training and education, can you outline briefly what you have considered to be the key considerations when undertaking research or evaluating studies? Do you want to start or what shall I do? The PACE trial, I think that most people would now agree, does not demonstrate that, for the majority of people with ME, that there is benefit from the two treatment, CBT, and greatest exercise therapy. That trial was not done blinded. It is very difficult to do a blinded trial, I understand that. However, one must understand the limitations of an unblinded trial. The modest effects that were seen from that trial could be, I am not saying that they are, but they could have come about because of the unblinded nature of the trial. The second point in your petition summary calls for a review to ensure that healthcare professionals training and education materials reflect the latest scientific evidence. Can you expand on that? For example, is there international evidence that you are aware of that is not being considered or acknowledged within Scotland? I suppose that I am not sure that there seems to be—do you mean about care or management of the disease, or do you mean about research? Probably both. From your submission, you are saying that the care of those with ME is not adequate, but what we are hearing is that research is very much in its infancy. Yes. For example, there is the work of a doctor at the University of Pacific, Dr Van Ness, and he is showing an abnormally early transition to anaerobic metabolism. He has worked out a system of heart rate monitoring, which gives us the best practice to try to stay within our energy boundaries and not become more severely unwell. That is more recent. I brought some of the biomedical research highlights, but I think that Chris will probably be able to go into them more. However, although there is not that much research, there is some like that, which does give us—indicates—we could be managing the disease. I am interested in the idea of it impacting the anaerobic energy system and how that impacts on quality of life. For my clarity, is the research suggesting that early tap into that anaerobic energy system is what is distracting from your ability to move? There is evidence of metabolic dysfunction involving the mitochondria, for example. Those are observational studies. They do not say that they are directly a cause of disease. They could be a consequence. We need to understand that it could be one or the other, so we do not know. I think that the most impressive research, which is yet to be published—I know that, but it is still impressive—is that there is an immune signature of ME, so that, if and have people—Mark Davis and Stanford University have done this—demonstrate that they can distinguish between healthy controls and people with ME by their T-cells and their clonal expansion. To me, that means that there is an immune component to this disorder. We know that there are many ways in which immune dysfunction can affect overall wellness and energy levels. You mentioned that you think that it attacks the endocrine system as well. Is that fair to see? I base what I know on evidence and strong evidence. I do not think that we have that evidence today, but I would be very happy to see if there were to be any. I do not know. Richard Hamilton. Good morning, everyone. You spoke about the education of healthcare professionals. In the background information, it states that care is a responsibility of GPs who do not receive training into how best to diagnose and treat ME and are often badly misinformed about the disease. That also seems to have been reflected in evidence given to the Health and Sport Committee last November, when the committee heard that majority of GPs were not aware of the Scottish good practice statement on ME-CFS. What are your thoughts on that and if you can expand? Sorry, my thoughts on how bad it is. The fact that care is a responsibility to GPs who do not receive training into how best to diagnose and treat ME and that the Health and Sport Committee found that GPs were not aware of the Scottish good practice statement on ME-CFS. I am not sure whether you are asking for Emma's personal experience or just in general. Anecdotally, I have been with Emma in appointments and heard from many other people with ME that doctors are not aware of the best way of supporting people with ME. Many of them still have a belief that it is a psychological illness and that it does not have a physical basis to it. The action for ME study that you mentioned is that only 30 per cent of GPs said that they were aware of the Scottish good practice statement, and only half of those actually said that they used it. You can see how little used it is. I think that there is a real issue, not just with GPs but with other healthcare professionals in their understanding of the disease and the way in which they can best support people. A doctor that I talked to last week, who is educated in Scotland, told me that his training involves 15 minutes of ME training, as opposed to two days on multiple sclerosis. Would you recommend that it is something that is given further consideration, of course? I presume that that is what you are backing, but how do you go about that? We are still working on what the best thing to do. At the moment, I think that we would ask the Scottish Government to ask the royal colleges of medicine to review the treatment of how they deal with ME and the curricula. For the NHS Education Scotland, the specialist health board, to explain the results of a recent review that they have carried out into the materials in adult ME and describe their approach to ME, which is perhaps slightly different from the approach that we would like to see them take. Your ultimate objective would be to raise awareness amongst GPs, so that they would use that Scottish good practice statement and highlight awareness of the condition. Yes. I think that there are also separate issues around the Scottish good practice statement, as you are probably aware. Most diseases have assign guidelines, and you will see in the recommendations from 2010, from the needs assessment recommendations, that at that stage it was not believed that there was enough evidence to support producing a sign guideline for ME. We have not agreed this yet, but I think that there may be now enough evidence to produce those guidelines. The Scottish good practice statement for CFS ME is so rare that it is not surprising that health professionals have not heard of the very few Scottish good practice statements out there to be referred to by health professionals. There is something around that whole awareness of how GPs and other health professionals are made aware of diseases like ME that ME needs to be at much more on the front line. Just on a supplementary there, the statement was supported by a patient guide. I just wondered if you had any comments about that guide itself. We could come back to you on that, if that would be useful. You are referring there about sign guidance and so on. Our briefing refers to the NICE guidance, which has currently been updated and due to be published in 2020. I wonder what your views are on the NICE guideline as it currently stands? It is not fit for purpose. Are you aware of any engagement or information that has been undertaken by NICE to inform its updated guidance? If the NICE is not fit for purpose, are they speaking to the right people about updating it? If so, have you had the opportunity to contribute to that by consultation? According to our briefing, the Scottish Government has indicated that it does not intend to review the Scottish Good Practice statement, which we have heard about, until the updated NICE guidance is published. I wonder if I can ask for your thoughts on that. I think that the first point was whether we have been consulted. Yes, there are consulting patient groups, including ME actions, because we are part of a UK-wide group. We have two volunteers going along. I think that their feedback to us was listened, but we heard that they were taking on the views. They were allowing views to be aired, but the guidelines changed. However, they are holding consultations and inviting comments and holding meetings with patients and healthcare professionals. There are some concerns about the harm that the NICE guidelines are in their current state. I think that all charities, certainly ME Action UK, are calling for CBT get to be removed as soon as possible before 2020. Your argument would be that the Good Practice statement has to be looked at while this is in progress rather than at the end of it? Yes. We have the opportunity now to change it. We have the evidence now, and we have the chance to stop other people from being harmed by it. It should be changed as soon as possible. There is a precedent for this in the sense that the Scottish Good Practice statement was produced just after the NICE guidelines, but it is considered by many patients as better than the NICE guidelines. They did not take the NICE guidelines entirely as the recommendations as set. They looked at them and reviewed them much more effectively than the NICE guidelines. Thank you very much for that. Rona Mackay Emma, you spoke earlier about graded exercise therapy and what that entailed. I wonder if I could ask you a bit about cognitive behaviour therapy and why that is harmful? It is definitely not all cognitive behaviour therapy. I think that people with ME and anyone with a chronic long-term illness can benefit from psychological support. It is called directive cognitive behaviour therapy. It is based on the idea that ME is caused by fear of exercise and deconditioning. My personal view is that it is quite manipulative. I do not think that we should be I think that cognitive behaviour therapy to support patients is fine, but cognitive behaviour therapy on the basis that they are just afraid to do anything and to persuade them to exercise more is harmful. Is that what happens in terms of if you go to one of these sessions, that is pretty much what you are being told with the CBT that it is really in your mind that you do not exercise? Is that what has been happening at the moment? It is not explicitly like that. The point is that you is that the healthcare professional has to gain your trust that you are sick. I currently have had therapy that is supportive and it is about managing your symptoms. The CBT was like everything coming back to something that you were doing and everything coming back to sort of blaming you for the disease. Which is not helpful. It was not helpful though. It did make me think that I was going crazy. I think that you just think that I must be what the therapist is saying and what I am experiencing is so different. And do most patients get that? Most patients in England get that. The provision in Scotland depends on the therapist. Honestly, you could get one that was supportive or you could get one that really followed this. Our briefing refers to healthcare needs assessment of services for people living with ME-CFS undertaken by the Scottish Public Health Network, which came up with 26 recommendations. If I could ask you what are those recommendations, you would consider the priorities or if there is anything missing from that list of recommendations. To be honest, they all look like priorities for us, but we would need to look at the list in a bit more detail and come back to you on that. As you can see, a lot of what we are bringing to the committee today. Our question is what happened, why they have not been implemented and we do not know where that went in 2010. Could we come back to you as to what the priorities would be? That would be really helpful. Thank you very much, Nic. A concern that has been identified in those recommendations is that the recommendations can be made, but they are not taken forward as you have just alluded to. I wonder if you could outline how many of those recommendations are made in the healthcare assessment, whether they come into effect or are being actively progressing. Presumably, you would like to come back to us on that one, so I would just want to add that in if I could perform this. We had a briefing in this morning that talked about the fact that it is not scientifically sound. I just wondered if Professor Chris Poynton would be able to comment on why that is the case and why the NHS recommended therapies for ME patients in Scotland. It implies that the Scottish Government supports the CBT model of ME. I think that this comes back to the question about the PACE trial, which was investigating the benefit or otherwise of CBT and GT on patients. It comes back to this question as to whether there was benefits for most people from that trial or evidence for benefit for most people and there wasn't. There appeared to be benefit for some. A reanalysis of that indicates that that effect was lower than initially proposed or initially published. Even then, that modest effect could have been due to the unblinded nature of the trial. People knew whether they had one type of therapy or another. Because they were being told, as I think that we have just heard, that particular therapies were effective, that influenced their reporting of the outcomes. That is what I am saying. It could have led the impression of a success for a trial, which then influenced the nice guidelines or the retention of the nice guidelines. I ask both our colleagues, who are not members of the petitions committee, but are here for this particular petition. If they want to either ask a question or make a comment, mark first name Ben. I wanted to ask you, Emma, about the provision of specialist nursing services across Scotland. You mentioned Fife. I am not sure if you had access to that care and support when you initially contracted your condition back in St Andrews. Is it the case that NHS boards are reluctant to put in place specialist nursing support? Is that the best kind of support and care, or should it be mainstreamed in a different way? I did not have access to it. I know that the Fife patients support the nurse. I am sorry, I have forgotten. It is about the provision of specialist nursing support. Is that something that you think is a model that could and should be used by other NHS boards to support that? Is that a best practice, in other words? It would be fantastic if there was specialist nursing every health board, especially as they can give home visits to severe ME patients. Again, it is about managing the illness early on in diagnosis for the best long-time outcome. I do think that NHS boards are reluctant to invest in nurses. Probably because they do not see ME as important. You are probably aware, Mark, that the nurse in Fife is completely overwhelmed by the number of patients with ME in Fife. I think that we are probably not talking about one specialist nurse per health board, but funding to provide more than one nurse or different types of services. On the back of that, I understand from my constituents in Fife that there is between a 10 and 12-month waiting time to be seen by the specialist nurse. I wanted to really ask you around how we should go forward with that. How do we ensure that that specialist support is available across the whole of Scotland? Is that waiting time compatible with a Scottish good practice statement? My understanding is that, in that care pathway, it identifies four months as being an appropriate time to be seen. 10 to 12 months would suggest that that specialist advice is not kicking in nearly as early as it perhaps needs to. It definitely needs to be—I know that I have already said this, but—good management advice as soon as possible, like the four months suggested in the Scottish good practice guidelines, is essential in possibly helping to stop deterioration, but definitely for, hopefully, long-term improvement. I think that the answer is probably more investment in nurses. There is evidence that the prevalence is about 1 in 200 individuals. There are plenty of other disorders at that level of prevalence, so I would suggest that whatever is in place currently for diseases of this severity at that level of prevalence is put in place very soon for this disorder. Janet, I have been working with you over the past two years to assist you as your constituency MSP, and it has been striking to me not just the leadership and courage that you have both shown as campaigners, but how widespread the campaign is in Scotland to take forward action on this issue of disease and the stigma and discrimination and blame, as you described it, Emma, that you felt, and to overcome that. My first question would be how important it is that institutions like the Scottish Parliament continue to focus more attention on ME in order to get past the stigma that there has been in the past and to make sure that we have those changes in investment and attention in terms of healthcare provision and advancement in the way that ME is educated in our healthcare training systems? I think that it is absolutely critical. We have outlined the reasons why we desperately need help for people with ME in Scotland. It is very clear that, without the Scottish Parliament and the Scottish Government taking action, we are not expecting the Scottish Parliament to do everything. Other organisations will, then, hopefully be encouraged to come in and support through funding research and so on, but we need somebody to take a lead in Scotland. As the comments on Emma's petition showed very clearly, this is a chance for Scotland to take a lead. The Scottish Government to take a lead and the Scottish Parliament to take a lead are not just in Scotland, but it would be setting example to the rest of the world. We have a long history of medical research, and we are now going to take a lead in ME research, which is the same with education of healthcare professionals and support for patients. I attended a meeting in Geneva at the World Health Assembly. It is quite clear that many countries around the world have even worse support for individuals with ME than is in this country, in the UK as a whole. Taking a lead would help internationally. One more question, if I may. As much as that is absolutely true in terms of giving more assistance to people with ME in Scotland now, there seems to be, with the film Unrest and its attention, international film festivals. There seems to be a worldwide movement and mobilisation of those who know about ME or are suffering from ME and care about ME to see action on this. I am trying to emphasise the pertinence of the issue, not just for those who are suffering, but as a health issue that is at the forefront of people's minds at the moment. Thus, there is a window of opportunity, but, as all windows of opportunity are, they shut. People will forget that those neglected people in time and less action is forthcoming. I do not know if there are any last points that you want to make, Emma, before we conclude. I have found that very thought-provoking, and I thank you very much for your presentation. I wonder if members have any comments on how they might want to take the petition forward. Thank you for giving us evidence today. There are two things that jump out from me. Obviously, there is a lack of research, and the research is required. There seems to be a feeling that we are talking about attacking energy systems here and attacking endocrine systems here, and that, of course, is a sort of biomedical approach that is not happening at the moment. That is something that I would like to explore. The worst bit for me is that our healthcare professionals have nice guidelines available. We have heard just before that dissemination of information is not getting to the front line, and we are not arming our healthcare professionals with enough knowledge of how to tackle conditions. That is one of those conditions. I think that ME, until not that long ago, used to be branded as sort of yuppie fluid. I think that we have all had case work that has moved, and that is why I am particularly glad that this petition is here. I wonder whether, in the first instance, we should be writing to the Government to seek the views and the actions called for on this petition around the idea of increasing research and disseminating that information to healthcare professionals around the nice guidelines. If they are consulting, how they are consulting, but are there things that they could be doing currently around good practice instead of waiting until the end of the process, I think that you should be asking them about that. I was really struck by your evidence and thank you for bringing this petition. It is really important, and I am sure that 21,000 other ME sufferers thank you as well. The thing that strikes me is that this is not a new condition. Despite all the guidelines and the initiatives that have been set up, it has not really worked. Nothing has changed. It is not acceptable that nothing has changed. I think that, hopefully, this petition will kick-start some action from the Government and from the medical establishment. I think that, as my colleague said, we need to write to the Government to see what action we are calling for and to the wide range of other stakeholders to give us their views. That has to be the start of something that will make a difference, because so far you have been denied that. It seems to me that five are blazing a trail on this one, but I got the feeling that the funding was probably through fundraising. I do not know if I am right there, but I would like to know what all the NHS boards are currently doing and what position we are in so that we can get some sort of consistency in terms of how we understand, rather than anecdotal evidence. I think that we want to write to the Scottish Government for their views. I do think that we want to write to the health boards, as you said, what is the provision across the country. I am interested in the clinical view on treatment that the petition is arguing is harmful and what is the medical view on that. I think that we would want to write to those organisations that are closest to this around ME itself, which is action for ME. We have also been told about ME Research UK, the Scottish Public Health Network, and we can maybe reflect with the clerks if there are other groups that would be worth our speaking time. If you have any local groups that you are aware of, that you are professionally aware of, that you think would be worth while I was seeking submissions from them, we can do that. Anybody who is interested in his field can also submit on our petitions page. Is there any other suggestions that we have? There seems to be quite a lot to be going on with. There is quite a substantial piece of work to be done there. I thank you very much for your attendance in providing such thought-provoking evidence. I am now going to suspend the meeting briefly to allow the witnesses to leave the table. I will call the meeting back to order. We move to the next petition for consideration, which is petition 1695 by Ben and Evelyn Mundell on access to justice in Scotland. I welcome David Stewart at the MSP to the table for this item. This is a new petition that was lodged without collecting signatures or comments. The petition calls for action to be taken to ensure that people are able to access justice, including access to legal advice from appropriately trained lawyers and financial support through legal aid. The petition asks for these to be available so that people in Scotland can pursue cases where they consider human rights breach to have occurred. Members will note that the background information provided for us highlights that Mr Mundell and I have previously petitioned the Parliament in relation to issues arising from the EU milk quotas and ring-fencing policies. While the background information to this petition sets out some detail on that issue, the focus is on questions of accessing legal advice. The petition contains that specific issues that people may face in accessing such advice include the Law Society of Scotland's list of firms undertaking human rights cases is out of date. There is a lack of lawyers in Scotland who are willing to take on human rights cases. The law firms that are willing to take on human rights work will only do so if paid large sums up front and will not consider such work on a legal aid basis. Edward Mountain MSP has provided some comments on this petition. I was approached by two constituents, Ben and Evelyn Mundell. As I have a background in farming, I would like to refer the committee and the convener to my register of interests regarding this. The situation was that the Scottish Government took action to protect the milk industry in their area by ring-fencing their milk quota to the locale. That ensured that local milk processors stayed in business but prevented normal trade. The ability to lease or sell milk quota was open to farmers in other parts of Scotland and the UK. Mr Mundell also believed that business was destroyed as a processor could offer a low price for their milk, knowing that the quota could not be traded. The Government did consult on the ring-fencing before it was implemented, but failed to consult with individual producers who legally owned a quota and, furthermore, they took an inconsistent approach to contentire than they did across the rest of Scotland. Mr Mundell feels that their human rights have been compromised. The issue that is due to the fact that legal advice using legal aid is not available for human rights violations and they cannot afford the massive costs that are involved, thus they cannot challenge the Government's actions. The petition based on their experiences is to widen legal aid to include human rights violations, which I support when the actions that cause this are undertaken by a Government. I would ask the committee to consider this further, perhaps write to the Government, request in comment on this potential human rights issue, and that is the end of the quote from Edward Mountain. I wonder if I may have been again able to do it at this point, but to get his involvement and then reflect on what we have heard. Thank you very much, convener. I thank the committee for allowing me to support the petition from the Mundell family. Just a little bit background, I have been involved with the family for several years, but I would also like to place on record my thanks to previous members who supported the family, not least Jamie Mcgregor and Peter Peacock, and I thank Edward Mountain for his work as well. As you know, the family is in the gallery today. This is a highly complicated case, but it is well summarised on the accompanying papers that you have outlined. On the surface, it is about the ring fencing of milk quotas for the dairy farmers particularly, but not exclusively within the southern Isles ring fenced areas. The deeper and fundamental issue is how an ordinary Scottish family on a modest income can seek redress and remedy to potential breaches of the European convention of human rights and justice in general. The simplistic answer, convener, is to seek legal representation through the civil legal aid scheme. The family has been touched with more than 50 lawyers, either in person or by phone. The vast majority of the family will not deal with human rights cases, and those who do reported that they will only deal with prisoners or those who have an immigration issue. To give you one example, one lawyer agreed to take the case and wanted £25,000 in upfront payment before proceeding. The sum represents double the family's disposable yearly income. Mr. Mr. Smedel met me in Parliament yesterday. He told me that many farmers in the ring fenced areas were placed in an impossible situation, with a milk price below the cost of production. The forfeit of their property, which, as I outlined in the report, is a breach of article 1 of the European convention of human rights. No money to pay interest on their overdraft and having to incinerate perfectly healthy cows at less than £500 per head. No money to diversify severe stress and, in some cases, a loss of home and business. That new is not just about one family, much as the Smedels are in a terribly tragic position. It is about how you write a wrong. Surely the test of any advanced democratic society is how easily and transparently you can seek legal redress at the highest level. If I may summarise, convener, I have three suggestions. Obviously, it is the committee's decision, not mine. I would certainly suggest writing to the Scottish Government and the Law Society of Scotland to seek views in the actions called for in the petition, as I think recommended seems very sensible. Also, perhaps unusually, the petition could be referred to the Qualities and Human Rights Committee so that the petitioners could provide evidence, because there is, as you know, carrying out an inquiry in this particular area. For information only, it would probably be useful to pass the petition to the First Minister's advisory group on human rights leadership, since they are looking at that, as we speak. Finally, I thank the committee for listening to my representations this morning. I do appreciate that it is very complicated, but the key issue that I would stress is access to human rights at a very senior level, where families have limited funding. That is the key, and I quite rightly agree with Edwin Riten's point that there has been a fundamental miscarriage of justice, which has effectively run almost this family into bankruptcy, along with many other farmers in the area. That is very helpful and a dilemma for us as a committee, given that the equality and human rights committee are taking evidence. If we do that, if we refer it, we would not then be able to take any other action, so we might need to think about that, but I would be interested in other members' comments on what we can do, Rachel. I mean, would it be permissible for the family to give evidence to that committee? I'm being informed that the evidence is now closed and the committee is considering its draft report in private today, so it may be that that report, once we see that, might inform some of the action around this petition, but we're not going to be able to do that the other way round. I think that this is a very good example. It seems to highlight a flaw or a gap in the law. It's my understanding that the Law Society is reviewing its own legal aid rules as well, so I do agree with writing to the Scottish Government and the Law Society of Scotland to seek the reviews on the actions that I call for on the petition, because I think that there's already work being done on that. If nothing else, it might also help to inform that review. We should write to the Government to highlight the petition and the Law Society to have their take on it as a first step. We will take a note of what the report from the Call to Human Rights Committee says on this question. I'm actually interested in it. I know that it's said very explicitly that lawyers won't take these cases unless they're paid up front. I wonder whether we could maybe ask the Law Society whether there are examples of good practice where people don't do that. Is that what everybody does, or it's just what almost everybody does, or what the kind of balances would be worthwhile knowing about? That's a good point, convener. I could just stress for the record, obviously in Scotland there are a great deal of expertise among the legal profession on human rights. I'm not disputing that in any way. The issue is that to get that expertise and the provision of legal aid together is extremely difficult. As I stressed earlier, the family would round 50 lawyers and I passed a very helpful paper from Spice to them, so they went in with this with their eyes open. It's extremely difficult to access justice at the high level when you're on a relatively modest income. That's the real dilemma. Anything that the Law Society could do to facilitate that would be very useful. Do we know whether the Scottish Human Rights Commission has done anything around that? Certainly, their organisation has lots of expertise, and certainly if the committee wanted to refer that to them as well, I would welcome that. David also made the point that he wanted to ask the First Minister's advisory group on human rights leadership about this, and I wondered whether we should submit it to them. We recognise the strength of representations from both Edward Mountain and David Stewart, and we certainly want to at least explore the extent to which there is a gap in the system for people who feel that their human rights have been violated and what support they have for the enforcement of people's access to human rights and justice in that regard. We will also be a petition that will come back to the committee, and we will keep the petitioners informed of what submissions we receive, and they will be able to provide a further submission once we have heard those responses. I thank you, David, for your attendance. I thank the petitioners for their petition 2, and it's one that we would look at further. With that, can I close the meeting, and we are now going to move into a private session.