 If I can call everyone to order and welcome everyone to this, the second meeting of the public petitions committee in 2019. We have apologies from Rachel Hamilton and Maurice Corry for attending. We have one item on the agenda this morning, consideration of three continued petitions with evidence on each from the Cabinet Secretary for health and sport and we also welcome Emma Harper MSP who is attending for this petition. The first petition is petition 1619, lodged by Stuart Knox, on access to glucose monitoring. The petition is calling for glucose monitoring sensors to be made available on to prescription to all patients with type 1 diabetes. When this petition was last considered in June 2018, issues were raised relating to the Scottish Intercollegiate Guidelines Network, guidelines for type 1 diabetes management and the VAT element of Scottish Government funding for additional insulin pumps as well as continuous glucose monitoring devices. Responses have been received concerning these issues from the Scottish Government and the Cabinet Secretary for Health and Sport. Consider this petition, the Cabinet Secretary is accompanied by Catherine Calderwood, a chief medical officer and Elizabeth Sadler, deputy director of planning and quality. Can I welcome the Cabinet Secretary and officials to the meeting and I would invite to provide a brief opening statement of up to no more than five minutes after which we will move to questions. Thank you very much convener and good morning. Committee members, can I say at the start, I'm very grateful to Dr Calderwood for being able to attend with me this morning, given all the other pressures on our diary. So I'm grateful too to the committee for inviting me to give evidence today in this petition. As you will be aware from my letter of the 8th August, the Scottish Health Technology Group published their advice statement on the flash glucose monitoring device freestyle libra on 13 July 2018. My letter at that time also stated that NHS boards who had not yet included freestyle libra onto their local formulary were considering how to implement this advice to best effect. I can now provide an update to you this morning that all NHS boards in Scotland have now included freestyle libra in their local formulary, and are making it available on prescription. I expect all boards to make freestyle libra available to patients in line with clinical guidelines and in a phased and controlled manner in order to ensure that appropriate education is delivered prior to initiation and recognising challenges for the manufacturer to match demand. This will benefit many individuals across Scotland and I hope we'll reassure the committee that the spirit of the petitioner's concerns in relation to freestyle libra have now been met. At the meeting on 28 June last year, my officials clarified that freestyle libra is not a continuous glucose monitor. As more clinical evidence becomes available, freestyle libra is showing positive effects in improving quality of life by reducing the numbers of finger-prick testing that patients require to self-manage their diabetes. However, freestyle libra is not suitable for some patients, in particular for those who have very limited or no hypoglycemic awareness. There is strong clinical evidence to demonstrate that CGMs have a positive impact for a small cohort of patients with frequent or severe hypoglycema, improving glycemic control, reducing hypoglycemic episodes and emergency hospital admission. We will continue to provide NHS boards with additional funding specifically for continuous glucose monitors so that they will increase the number available to diabetes patients where that is clinically indicated. Finally, as you will be aware, diabetes remains a clinical priority for the Scottish Government and I want to reassure you that I am committed to ensuring that our health service continues to deliver care and treatment of the highest quality. I am happy, convener, of course, to answer any questions that your members may have. Thank you very much for that. I think that the committee would recognise that that is a very positive statement on the petition. Can I ask you to indicate that there are issues around training and the time to work through the system? Do you have a sense, if not a target, of a sense by which time people who would benefit from this would be able to access it routinely across Scotland? I do not have a target time, as I am sure that committee members understand. There needs to be that clinical judgment about the appropriateness of freestyle delivery for a particular patient, a bit of initiation, then an education with that patient. Of course, that all has to happen, if you like, at the secondary care level. Once that is undertaken, the prescription will come from the individual's primary caregiver, if you like. It is a phased introduction, but it is led by the numbers of individuals for whom this would be appropriate and doing the necessary, if you like, two steps before we get into regular prescribing for that individual. I do not know, though, in terms of how that may pan out whether Dr Caldwell would want to say anything else. We know that some of our health boards have come on stream very recently with availability of freestyle Libra. There is a group of patients for whom it is going to very obviously be the best choice and something that they, in fact, may have been looking forward to having the opportunity to use. There is a period of training for the patients that they need to attend and ensure that they are able to use the device and members of their family also. Once that training is undertaken, the prescription is able to go ahead. There would be a group of patients for whom there might be some additional work to be done as to whether it might be the right thing for them, but they might need a longer time until they are moved forward to changing to using freestyle Libra. What we are saying is that it is now available across Scotland in all our health boards. There will be some clinical differences in length of time to people changing over. It is not for everybody, but there is no impediment to those patients for whom it is the right way to monitor their glucose levels to be able to use it. Thank you very much for that. Angus MacDonald. Thank you, convener. Good morning, cabinet secretary. I welcome the announcement this morning as well. Having had a number of constituents who have approached me with regard to freestyle Libra and the visit that the committee made to Dumfries and Galloway some time ago, the benefits of freestyle Libra were brought to our attention. You mentioned, cabinet secretary, in your opening remarks the clinical guidelines. The committee has previously heard evidence that sign guidelines for type 1 diabetes management are out of date and have not been kept up-to-date with technology. The committee understands that those guidelines will be withdrawn in 2020 rather than reviewed or updated. We would be keen to hear how you would respond to that point. However, evidence received by the committee has confirmed that there are proposals in the pipeline for guidelines relating to type 2 diabetes to begin being updated this year. Why are there no similar plans or proposals to update the sign guidance for the management of type 1 diabetes? As you indicated, Mr Macdonald, the technology is moving so fast that by the time the guidelines are updated, they are potentially out of date. What we are looking to do or what is being looked to do is more rapid technical assessments, for example in glycemic control in type 2. I know that Professor Leitch in his letter to the committee offered an explanation of that. There is, as I say, the question of—by the time you update the guidelines, they are themselves out of date. What needs to be looked at is what system can you have that keeps pace with technology while still offering the right guidance to clinicians? I think that Dr Calderwood wants to add on that. The sign guidance has really changed into their approach. It is not specific to this particular diabetes guideline. What was happening was that the sign guidelines were being updated for everything every three years. Sometimes there was no change because there was no more research, but sometimes there was so much change that they were out of date. What that guideline committee has undertaken is a complete change in the way that they are going to do the guidelines. They are going to retire guidelines that are older ones, and their call has now come for much more focused guidelines rather than something that would take years and years to produce. With this new technology, what we would be looking for would be the Scottish Diabetes Group, which would put forward a proposal to sign with a very narrow focus. The new procedures in sign mean that that is turned around very rapidly. They might have a Scottish Health Technologies group assessment of the technology, and then the guidance would look at a very quick production of something that was clinically relevant at that time. It is for the Scottish Diabetes Group in this new world where we have Freestyle Libra to put forward proposals to sign. What they are saying is that they will take on x-meny per year, but they are a focused piece of work that are produced much more rapidly. I would argue that, in agreement with them, they are much more clinically relevant than something that takes three or four years to produce. That would apply to anything when modern technologies are now being applied across the landscape in relation to medicine. Are we saying that, in the medium-term, sign guidelines are not going to be relevant? No, I do not think that that is what Dr Colton or the guidelines committee is saying. I think that what they are recognising is that, so that does not apply to everything, but there are areas where technology is very relevant and is moving quickly. Therefore, the guidelines committee have recognised that and said that they need to alter the way in which they undertake their work, so that they can keep pace with that technology. In the past, taking two or three years to update guidelines was adequate, but now, in some instances, that is too long and would end up being out of date and is a significant, in effect, waste of effort. Now it would be for those where it is appropriate that much more focused piece of work that tries to keep pace with the speed of technological developments in medicine, but it is clinically relevant. Our guidelines then add value to the clinicians and to the decisions that they have to take. In the meantime, there will be no sign guidelines for type 1 diabetes. I wonder how you decide across the board which areas are subject to the fast technology and other areas that are not. I mean, I presume that there is some kind of rational way of doing that. Obviously, people who know that the petitioner has felt the need to bring a petition forward in order to get health boards to catch up with technology. I wonder what reassurance you can give people across the board that there is some kind of rational process for doing that. The original sign guidelines that we are talking about were written in 2010. I think that what we are looking at at the moment is something that needed to move on. We would expect the Scottish Diabetes Group to feed into sign as I have described, but in the meantime, because we have got this new technology, we would be working with boards through the Scottish Diabetes Group to make sure that, first of all, where patients should be having this technology, they are having access to it and also monitoring, of course, the use, the uptake and if there are any problems. The prioritisation that sign is looking at, it has a work stream over a number of years. I could not tell you exactly which and what order things are coming forward in, but the idea is that we are not in Scotland relying on guidance that is then years out of date with new research coming behind it that is not then looked at. That is in common with the way that guidelines are being produced across the rest of the UK, a much more rapid process, but the Scottish Diabetes Group is key here for us. I do not think that we are necessarily addressing the point that I am concerned about. Are we a crossword having sign guidelines? Do they matter any more? Or what happens in other bits of the system? That might be something for giving me when we are digressing a bit just in terms of the diabetes issues. There is another means by which folk are being guaranteed that the modern technology is being recognised and that its access to the appropriate support is available. That might be something that we can come back to when we are digressing and not you. Before you move on, convener, it is an important digression. If it would be helpful, we will pull together the information in direct response to the issues that you are raising and send that on to the committee about how the Guidelines Committee is going about its work. Just though, for the record, it is important to be clear that we are not saying—neither is the Guidelines Committee saying that sign guidelines are no longer relevant. They are. It is a manner in which the Guidelines Committee go about producing them that they have looked to change and improve on in order to match the pace with which all of that is moving forward. However, we will pull something together and make sure that the committee has that. That would be helpful, because looking at it externally, if you are somebody with type 1 diabetes, you may be thinking that your issues are being deprioritised if there are no longer going to be guidelines available, but that would be really helpful. Brian Whittle? I think that we would recognise that, since the petition has been brought forward, there has undoubtedly been some advancement in the CGM and the knowledge that has been brought to the fore of what that can actually do for those who have the condition of type 1 and maybe even type 2. However, in July 2018, the Scottish Health Technologies Group published an advanced statement on freestyle Libra flash group cosmoniting recommending issues among adults that manage the condition with that multiple daily insulin injection or insulin pump therapy and concluded that it was good value for money. Based on those findings, what is the CGM's view as the current level of Scottish Government funding available to health boards for this technology? The funding that is available to health boards is, in my view, adequate to the demand that they have. As they shift where it is clinically appropriate to freestyle Libra, of course, there are other areas that they have been using their resources for, for example, frankfinger prick testing kits that they no longer need to use for those individuals. They will be able to manage their resource between what has been available up until now and the introduction of that new technology. We have also, of course, as a Government, provided additional funds, as I said in my statement, and we will continue to do that. Moving forward, I think that the public would be looking for us as some sort of consistency of application in how we reach that. I mean, I heard just this morning that in the Highlands, for example, there are only four units that are actually available, and they are being given out and used, as I understand, to the youngest patients. For the youngest patients, which kind of goes against what the Scottish health technologies group are recommending. How do we get to a situation where those who are suffering from type 1 diabetes currently would understand where they sit within their ability to access this kind of technology, because it does not seem to be that sort of consistency of application across all health boards? I am going to ask Ms Saddler to respond to some of what you said, but I should say that NHS Highland was the last board to come on stream here. In terms of how it goes through that phased introduction that Dr Calderwood explained, it is later than some other boards and needs to do some work in order to ensure that they catch up in terms of the availability of patients for whom this is appropriate, but I think that Ms Saddler might want to add some additional information to that. Freestyle Libra and continuous glucose monitoring are two separate things, but they produce a similar thing. Freestyle Libra is now available on prescription across Scotland, with NHS Highland coming on board for that earlier this week. That would be a clinical decision taken by the individual and the clinician whether that is a suitable technology for an individual. Continuous glucose monitoring is a more invasive device that somebody wears and it goes into their body. That is particularly suitable for people who have very poor hyperglycemic control and particularly for people who have no awareness of the fact that they are about to have a hypo or a hypo episode where it happens very suddenly. What a continuous glucose monitor does is alert the person that is about to happen. The Scottish Government has provided additional funding of £2 million a year over the past few years to support boards to provide an increase in the number of insulin pumps and CGM monitors. That money is allocated on the basis of need and clinical decision making. The numbers that I have are that for over 18, nine people in Highland have CGM. That is for over 18. I do not have a number for under 18. That is being rolled out in conjunction with individuals and their clinicians. Some people are now choosing to have Freestyle Libra rather than a pump because the Freestyle Libra is a less invasive procedure and that does also help them to understand what is happening with their sugar controls. However, they are two different things. Presumably, given that health boards are not adopting the technologies all at the same time, there is an ability across health boards to share that learning from early adoption. We understand that, across Scotland, there are around 250 people who have CGM monitors, and that will be increased over time. We think that that is probably reaching roughly 50 per cent of the people who would potentially benefit from a monitor, but clearly some people who would benefit from a CGM monitor may decide that it is in conjunction with their clinician that they do not actually want to have it. We are making good progress and we are committed to giving more money in 1920 and have just written to the boards to ask them about the progress that they have made in 1918-19, and we will then take decisions on the allocation of funding for next year. That is funding for this April. You asked about glucose monitoring, monitors and insulin pumps. Freestyle Libra will be funded by boards through their prescription. We do not know yet what the allocation is in January for decisions in April. The funding is in the draft budget. The funding is there in the draft budget. We then have boards come forward and tell us what their particular needs are so that we can then allocate from that funding to the boards in order to meet their particular needs. It may vary depending on where they have got to in terms of provision in this financial year and, therefore, what more they need to do in the next financial year. They simply have to advise us what their needs are and show us the evidence of where they have progressed so far in the coming year that looks like X or Y, and then we allocate that fund out from the plot that is already in the draft budget. Thank you, Maurice Corry. Thank you, chair. Good morning, cabinet secretary and panel. It is certainly what we are hearing for is some good news coming forward. Bear in mind your statement just now about how fast technology is moving, as you say. The Scottish Health Technologies Group advises that further research into the long-term use and use with children and young people is needed. How is the Scottish Government going to respond to those findings in relation to the technology moving forward and how does it intend to explore the issue further? Thank you very much, Mr Corry. I think that you and I have corresponded on this in the past in terms of particular constituent interests. I hope that what we have said this morning is helpful for that. I am going to ask Dr Calderwood to pick up the point on research. Thank you, Mr Corry. I think that the point really is that we must try to ensure that all patients who would benefit from the new technologies are getting them. There is caution, of course, at first, which is why we have some restriction. At the moment, Freestyle Libre is recommended for people over 18, not recommended for people on dialysis, for example, or for pregnant women, but we know that there would be many young people below the age of 18 for whom, of course, it would be the right thing to do. The CSO, the chief scientist's office, is under my jurisdiction in the Scottish Government. In fact, we are the envy of the rest of the UK in our ability to turn around applications for grants and have that funding available. We have a 30-day turnaround from submission to a decision for money to be given. If we have a particular interest in something, and I would say that this is new in Scotland, we have a whole country coverage, this is absolutely the right sort of study that we should be proposing. Interested, anyone can come forward, of course, but what we would be doing would be approaching the Scottish Diabetes Group to, of course, have contacts with our researchers across Scotland and beyond, people with an interest. Dr Keenan, my specialty adviser in diabetes, for example, who has been to this committee before and putting forward proposals so that we would have research that is happening as we get this coverage on board, with a view of course to spreading it to other patient groups if that was thought to be appropriate. So you are finding that this is useful. It is obviously giving you some leads and some steers and to what to do about it. Is it giving you some steers, the research that is coming forward, the results of that? Is it giving some steers towards how we deal with the younger people? I think that at the moment there are very small numbers of younger people who would be on a very individual basis with a clinician who knows that young person very well, because at the moment I don't think that we're using it in Scotland in many, if any, younger people, because at the moment it's not recommended. What we need to do is look at it case by case basis, but as this technology spread not only in Scotland but across the UK and beyond, there will be numbers coming forward. When we have an evidence base or begin to, the ability then to think that this is a technology that's going to be safe and effective in other groups of people, we would of course use it. Can I just ask one quick question to the cabinet secretary? Does that mean that you've built into your draft budget proposal funding to have those projects go forward? The chief scientist office has an allocation within the draft budget and it is for the chief scientist office to determine how they use that based on the research proposals that come forward. That is quite rightly, if you like, the decision of those with scientific and medical expertise and not the decision for someone like me. What I do is make sure that in the overall draft budget for this portfolio there is the appropriate allocation to that office to undertake that work and they then deal with that according to their assessment of the various research proposals that come forward. What we're saying in this instance in terms of under 18, if I am getting this correct, is that for individual under 18-year-olds it is a case by case clinical decision now based, as Dr Calderwood said, on the clinician's knowledge and relationship and understanding of that individual, so that is possible. In a way it's not so different in approach from the way we do with the PACS approach, for example, on drug prescribing, but parallel to that, with the Scottish Diabetes Committee and the chief scientist office research proposals that look to build on that evidence and more globally, we'll be looking at the research base on which decisions might be taken to widen access to under 18-year-olds. Cabinet Secretary, NHS boards have been asked to accurately record the introduction of all diabetes devices into the Scottish Care Information Diabetes Collaboration System. Can you confirm that this data is being recorded by all NHS boards and are there any potential challenges to NHS boards? I am not aware of any potential challenges to NHS boards. None have been raised with me and my understanding is that they are undertaking that work. I'm very happy if the committee would find it helpful for us to do a quick look round all the boards and get them to advisers as to where they are in that piece of work so that the committee has that additional assurance. I want to very briefly ask the question about delivering these devices and the issue of costs. There was an issue about health boards being given an allocation, but it turned out that it was not funding the VAT costs that were associated. I know that we had an explanation that was average and all that kind of stuff, which is frankly less than compelling. I wonder if we just get a commitment or recognition that, if we are going to deliver X number of devices, we actually have to will the means for that to happen and that this issue about VAT will be addressed. You have that commitment from me. I don't see any point in embracing improved technologies where they are clinically appropriate and not making sure that, as far as we possibly can, we allocate the resources in order for that to be delivered to the patients for whom it is appropriate. The issue around VAT and so on is one that, as you say, Professor Leitch responded to in his letter. I have nothing more to add to what he said in terms of how that was approached. Of course, if, as we progress through the work and boards—I assure the committee that boards are never slow in coming to me—if they feel that they have not been given the adequate resource that they need for a specific piece of work, we always look at that. You have accepted the general principle at the cost of something. It includes general terms what is going to cost the health board to get it. If you are not funding the VAT element of it, it is reducing the number. No, I do not accept that because, as we tried to explain earlier, I am very happy to offer further written explanation on that. Boards have an overall allocation in terms of prescribing. As more and more individuals use or switch from, for example, the finger-pricking test kits to freestyle Libra, there is a shift in how that resource is used, away from one and towards another. Our view is that, overall, that will allow boards to continue to manage the resource within the allocation that they have within their draft budget. Now, if boards, as they go through the next financial year and, of course, assuming that the current draft budget becomes their budget and, therefore, what I have remains as it is currently planned, where boards believe that they are having difficulties in meeting all the demands within their overall prescribing budget, they do, of course, raise that directly with us and we look with them at what more could be done to assist them. Thank you for keeping me up to date with the petition at the committee. I need to declare an interest because I am the co-convener of the Diabetes Cross Party group and I am a type 1 pump user and a freestyle Libra user. I am interested just to clarify that routine finger-prick testing is still required when people are using freestyle Libra. Sometimes there is variability in the results because freestyle Libra is interstitial glucose monitoring and not blood glucose monitoring. That raises issues with driving and the competence to drive and assessment requirements as well. It is just to clarify that finger stick readings are still required because they are not always accurate or we want to make sure that there is accuracy. I am also curious about a couple of additional things. Work has been done with the DVLA to move forward the acceptance of freestyle Libra or continuous glucose monitoring because it is interstitial testing and not blood glucose because that is what currently is required. The other thing is that it is about children. You clarified, cabinet secretary, that children who might have type 1 diabetes, unawariness of hypo, seizure activity at night, they may benefit from freestyle Libra, but that would be a requirement that they would work with their GP or their specialist doctor and do a person-centred approach for the kids to have that because that has been raised with me at the cross party group as well as with constituents as well. I am going to ask Dr Calderwood to respond in terms of children. I think that you are absolutely right that it is the individual and sometimes as you be aware from your cross party group the continuous glucose monitoring in fact might be more appropriate for a child than freestyle Libra. At the moment, as with many new technologies and many medications, the initial body of evidence is from adults and we creep, if you like, because of individuals into expanding the indications. The really important aspects are that those individuals are well known to their clinicians, that their condition is well known, that the risks and benefits of any new treatment that has not got a body of evidence in that particular age group so that the safety aspects are covered. I think that we know that continuous glucose monitoring and the flash glucose monitoring at freestyle Libra affords and the insulin pumps are of great benefit to children for all the reasons that you will know yourself, but we have not got the numbers at the moment to be able to point to big studies that say that this is the right thing to do, but that will come in time in Scotland and obviously we can learn from the literature across the world. On the DVLA question, the DVLA requires sufficient evidence that the glucose monitoring is sufficiently controlled and the glucose levels are sufficiently controlled and they require that on a UK level. We are relatively at a UK level at a very early stage in being able to produce that evidence for them, but, as that becomes available, it will be submitted and the DVLA will be asked to consider their approach in the light of that. Currently, people need to provide evidence of adequate blood glucose management using a finger stick device because we are not at the point yet where they will accept freestyle Libra results or CGM results. I should have declared that I was a co-convener of the diabetes cross-party groups, so I apologise for that. Just to follow on what Emma Harper was saying, one of the things that we heard in evidence is how this technology is a compelling argument for the potential for children in the evening, the sleep patterns in the evening, not having to wake them up to do finger prick testing. That is something that has been raised time and time again within the cross-party groups. I think that that is certainly an area of concern and hope for a lot of people with children with that condition. I think that what I wanted to ask really was is there any more work being done around potential long-term savings to the budget of this kind of technology, not just in not using the current kits that are available, but the long-term savings where we can prevent those with those conditions from sliding into other more costly treatments. Obviously, in the preventative health agenda, that is really where we want to be. Is there any long-term consideration that has been given to the budget? That is a really important point, Mr Whittle. I appreciate you asking it. On our analysis and where we can access the resources of economic analysis, I am keen that a number of areas across our work that we look to begin to develop some of that, if you like, cost-benefit approach and link that to the preventative agenda. I think that the preventative agenda needs a reinforcement of that type. It fails to me too often in terms of the preventative work, whilst we all understand, I am sure in this room, the absolute importance of that. It can feel elsewhere as nice to have if we can manage it, but let's just deal with what is immediately in front of us. I think that there needs to be a stronger base, if you like, for the case. I have begun some discussions about where we might look to initiate and have that work. Not always necessarily from inside the Scottish Government, we have a number of our major academic institutions who have a keen interest in some of those health areas and a lot of expertise in doing that kind of economic analysis. So we are currently considering how we might identify the areas that we would want some joint work on and move that forward. Again, as we progress those discussions, I am very happy to ensure that, certainly Mr Whittle, but the committee more widely, if they are interested, are informed of how we are doing. Thank you. Just a wee brief question. At the cross-party group for diabetes, we had a gentleman who had lost seven stones in weight, but he used the freestyle libra and self-funded and used that as part of social prescribing and family support. It got to the point where it does not take any of his type 2 diabetes meds any more. There is an application for the likes of freestyle libra for people if they choose to do that, but we would encourage them to use different approaches like social prescribing and family support as well. Is there a move or any research progressing for type 2s with that kind of monitoring? I think that, because the technology has been introduced in the first instance for people with type 1 diabetes, there are not the numbers. I suspect that there are people like that gentleman all dotted around across the UK that the difficulty would be having the numbers to do research that would be statistically effective. I absolutely though agree that all sorts of different methods, including what he has done, are of course the right thing to approach. We probably would take quite some time before there would be enough interest in researching in that area, but we start with something that shows a lot of promise. I think that we will really get the benefits, including the economic benefits that Mr Whittle is talking about. Inevitably, given that there are numbers of people with type 2 diabetes, I think that the use of those technologies will spread further as we have more information and the safety and benefits. We also have additional information about our overall investment in work to help people in terms of their diet and nutrition. Ms Sadler will give you that now. We published a type 2 diabetes prevention framework last year to support the implementation of that reinvestment of around £42 million over the next five years, which is aimed specifically at people who have been recently diagnosed with type 2 diabetes or who are at high risk of type 2 diabetes to support them to lose weight and to change their lifestyle to support a healthier living, to see if there is a possibility of potentially reversing the type 2 diabetes or reducing the rate at which the complications for the type 2 diabetes happen, which then obviously keeps people healthier for longer. The committee understands that NHS boards are currently being supported by a part-time continuous glucose monitoring diabetes specialist nurse. Can you confirm the remit and scope of the role, as well as describe how the impact of the role is being measured? Is it something that you would see developing? The purpose of the role is to go around the boards and to work with them to support teams to identify who the most appropriate people are for technologies to support the learning and the education that individuals need before they are able to be prescribed either a pump, a CGM or now freestyle Libra. That post is relatively new and, at the moment, it is going to last for three years. I am not aware of any formal evaluation that we have done on that. What I do know is that it is proving very helpful in supporting boards and that boards welcome the additional help and support that they are getting from that individual. Given what is quite a significant statement about access to the technology and the recognition that has to be rolled out, but the commitment that the Scottish Government took, do you think a part-time person for the whole of Scotland is sufficient to do that bit of groundwork that then liberates access to the technology? Of course, they are doing it with what boards already have by way of clinically skilled and professionally expert teams working in this area of diabetes. They are, in effect, providing additional support to that. We must not allow anyone to think that all that is happening here is a part-time resource. I cannot recall which member asked a question about sharing good practice. I think that it may perhaps have been Mr Whittle about the sharing of good practice between those boards who adopted freestyle Libra into their local formulary earlier than others in order to help others to benefit from that early learning. At this point, we have had no indication from boards that they require an additional resource to that three-year commitment and a lot of support and feedback from boards that this is proving very helpful to them. Presumably, in the normal run of things, you would look at whether this was the best use of that resource, given perhaps the cabinet secretary's suggestion that that kind of work has been done anyway towards the other value of this person. I apologise if I have led to that misunderstanding. I did not say that this kind of work is being done anyway. What I said was that individual boards already have groups of people who are clinically and professionally expert in the area of working in diabetes and with patients with both type 1 and type 2. That is an additional resource to them in terms of helping them with the new technologies. Now, as Ms Sadler said, it is early days as it works out over the three years. There will be some evaluation work done as to whether or not more is needed beyond the three years, but it is an additional resource in order to help boards with the new technologies to what they already have in terms of that board-based expertise. That is useful clarification. We have finished questions. We thank you very much for responding to that. I think that people would feel that that is a very positive statement and contribution from the cabinet in terms of what the petitioner is looking for. We might want to reflect on the evidence, when we get the opportunity for the petitioner and others to respond to what they have heard and then we can draw a final conclusion. Would that be fair? We will take an opportunity to reflect on the evidence of the very positive evidence that we have heard today. Those with an interest in the petition will be able to make further submissions. We can come to conclusions about the petition itself, but I thank the cabinet secretary very much for answering our questions in that one. If we can now move on to the next petition, which is petition 1629 lodged by Jennifer Lewis on the MRI scans for ocular melanoma sufferers in Scotland. The petition is calling for ocular melanoma sufferers to receive MRI scans of the liver to detect early onset of metatastic disease of the liver for patients with ocular melanoma. The petitioner and Ian Galloway, whom we have previously taken evidence from, have been consistent in outlining what they considered to be the advantages of people receiving MRI scans with colour contrast rather than a straight forward ultrasound scan. Members are also a copy of the most recent submission received from Ian Galloway, which expands on those concerns. The cabinet secretary is once more accompanied by the chief medical officer and Elizabeth Saddler. I invite the cabinet secretary to provide a brief opening statement. Thank you very much, convener. Again, I am grateful to you and the committee for the opportunity to give evidence on the petition today. I know that, as you say, it has been open for some time. While ocular melanoma is a rare cancer, it is important that those with this disease are treated with equal importance to those who have more common cancers. In Scotland, the disease is managed through our national services division at the National Specialist Scottish Ophthalmic Oncology Service at Gartnaval General Hospital in Glasgow, under the direction of two clinical oncologists, Dr Paul Couchy and Dr Vickers Chadder. Both have advised Scottish Government ministers and officials throughout the petition. I understand that at the time of lodging the petition, the petitioners were concerned that people with this condition in England were offered MRI liver scans but that those in Scotland were not. I am advised that there has never been a difference between England and Scotland in this regard. However, the clinical community do recognise that there is variation in whether MRI scans are offered between different NHS regions and departments across the UK. The current situation across the UK, including in Scotland, is to follow the melanoma focus guidelines that were approved by NICE in January 2015. Those advice that anyone with ocular melanoma should be offered six-monthly screening of the liver using non-ionising radiation. The most appropriate and commonly used imaging method in this case is ultrasound. It is my understanding that anyone living in Scotland who is diagnosed with an ocular melanoma will be initially treated by ophthalmology specialists at Gartnaval Hospital, Dr Couchy and Dr Vickers. Follow-up is provided under the direction of those specialists at local centres and is planned in consultation with the patient. During follow-up, those assessed at low risk of developing metatastic disease are offered ultrasound scans usually at their local hospital with any abnormalities being followed up using MRI. However, at a UK and Scottish level, there is not a clinical consensus for those at high risk. For all imaging is undertaken, for those at high risk, additional imaging, including MRI, is undertaken as clinically indicated. Should a metatastic disease be found, then care is transferred back to an oncologist specialising in that particular organ for the delivery of systemic therapy. MRI is not routinely used for all people. The primary reason is patient safety. MRI delivers a dose of radiation, therefore regular imaging in itself can be a risk. The second reason is that the guidelines do not specifically state that MRI should be used and, as I have said, there is no clinical consensus around the use of MRI across the UK. To address the issue of variation across the UK, Dr Couchy has made great efforts to conven a UK-wide group to update the guidelines and to develop a consistent approach. When the chief medical officer wrote to the committee on 17 May 2017, there was intent to conven a UK-wide consensus group. However, since then, the other centres outside of NHS Scotland have not been willing to engage in this process. Subsequent correspondence to the committee from officials mentions a Scottish guidelines group. That has been put together by Dr Couchy, who is actively pursuing the development of Scottish guidelines in the absence of that UK-wide consensus. Dr Couchy has convened a group of clinical imaging and patient representatives, and I understand that they are looking to report by June this year. That is important work, and I am very grateful to Dr Couchy for pursuing this and looking forward to receiving the group's report in the summer. I hope that the information provided today will clarify to the committee that people in Scotland with ocula melanoma are indeed recognised by the Scottish Government and NHS Scotland, which is why we have commissioned the national specialist service at Gartnavel. Anyone with this disease in Scotland can have an MRI scan if it is considered clinically appropriate and that work is under way, thanks to Dr Couchy, to try and ensure a degree of clinical consistency in the approach. I am grateful again for the opportunity to make that brief statement, and I am happy to answer any further questions that the committee may have. Thank you very much for that. I guess that the centre of this is that the petitions do not feel that they have access to MRI scans, so that is something that we want to explore. That is not their experience, that the caveat, if it is deemed to be clinically appropriate, will be the challenge, I think, for all of us. You mentioned, and indeed in the written submission of September 2018, that the petitioner in Ian Galloway referred to the Scottish guidelines group. I wonder if you can give us an update on the group that you are saying they are going to report by June. Can you indicate its membership and the patient representatives? Will there be a patient with experience of what the petitioner refers to as, quote, the rarity complex issues and scanning modalities for ocular melanoma? I think that it would be fair to say that the petitioners feel the condition itself is so rare, that there is a lack of understanding and that their direct experience of it would be relevant in this regard. My understanding, I am happy to provide the committee with the names, if you like, of who is on the group convened by Dr Couchie, but I understand that it has the relevant clinical specialisms, imaging expertise and a patient with experience of the disease. Folling on from the convener's question, you will be aware, cabinet secretary, that the petitioner and Mr Galloway have previously highlighted concerns about the experience of ultrasonographers, particularly in terms of interpretation and identifying metatastic spread to the liver from uvial melanoma. I would be interested to hear how you would respond to those concerns. If we look at the condition and the convener has already mentioned about the rarity, Mr McDonald, we know that there are around five cases per million of the population of this ocular melanoma. That would be in Scotland around 25 people per year. If we were to look at one of the most common cancers, for example breast cancer, one in 12 women will develop breast cancer over their lifetime, that is 80,000 people per million. We are looking at a disease that really is rare so that most doctors of any specialty, most general practitioners, will never ever see a case in their experience and most of the staff dealing with people with ocular melanoma other than at the specialist centre will never see a case in their lifetime. We understand that people who have this disease and have a great understanding of it will find that others do not have that understanding and do not have the detailed knowledge. The recommendations through various guidelines are clear when I look across the guidelines that there is not clinical consensus. In part, that will be because of the small numbers of patients. Even across the UK, there are small numbers. What it would appear also to be is that the research has not confirmed what the best modality of follow-up is and whether, in fact, one type of imaging is of greater value in ensuring that we detect metastatic disease early and, crucially, whether that makes any difference to survival. We know that 90 per cent of people with metastatic disease will be in the liver so that it would therefore be the right thing to do to image the liver. The imaging of using ultrasound would, in routine practice, be your first port of call. Ultrasound is completely safe, it is non-ionising radiation, so it carries no further risks to the patient. If you are looking at a frequency of every six months, that over a person's lifetime is a very large number of scans. There is not clinical consensus as to whether, in fact, ultrasound alone should be the modality or whether ultrasound as a very safe procedure followed by MRI is the right thing to do, where MRI in itself, with quite a significant dose of ionising radiation, carries with it risks in particular if you are doing multiple scans over a patient's lifetime. Okay, thanks for that explanation. I think that following on from that is that in his most recent submission, Mr Galloway states that ultrasound scans are not recorded there for the results of those scans. The interpretation is open to interpretation at the time where MRI scans are much clearer and also available for others to almost have a second opinion. Do you have a concern or an opinion on Mr Galloway's concerns there? I suppose that I am considering Mr Whittle the use of ultrasound in general terms. So, the routine of an ultrasound scan is that there are still images taken during that so that those would be recorded and kept as part of a clinical record, so there are pictures. The pictures would tend to be, obviously, if there was an abnormality found, but also if you are looking in particular areas, there would be metastatic disease can be seen in some areas of the liver earlier than others. That is to do with the way that it spreads. There would be pictures, then, of clear areas of the liver to record in the patient's record. I am unclear as to whether there is a report written, but that if there was to need to be any second opinion, that there are always still images taken of ultrasound which form part of the patient record. I do not think, because it is not a dynamic scan, that there would be video taken in my specialty obstetrics. We, of course, can take a video of the ultrasound to be saved and looked at again, but it is not the case that there are no records after an ultrasound is done or somebody cannot come back and have a look at images. I think that, just from my clarity here, it is not something that I am a particular expert in. Mr Galloway is trying to say that if they are being scanned every six months, from your perspective, you think that an ultrasound stills comparative, if you were to compare one six months' scan to the next, would be adequate enough to perhaps highlight any abnormality, and that, in your consideration, an MRI scan would not necessarily add any complexity to that. This is not my expert area, so I am reading and taking advice from experts, Mr Whittle. What I understand is that, in the cases where ultrasound is performed, the view is that that would pick up metastatic disease. The clinical consensus here is that, if there are abnormalities or in groups of patients who are seen at high risk, whether that move is direct to MRI scanning in every case, there is not agreement across the country about that. We have a case where we know that everyone in Scotland will have access directly to those ultrasound scans, those people at high risk, and there are various clinical criteria that put somebody into a high-risk category. Those criteria are age and certain appearances of the melanoma, but they will have an ultrasound scan progressing to an MRI or an MRI scan directly. At the moment, we do not have the evidence as to whether one approach is clinically going to change the outcome for people over a different approach. What we do know is that the significant dose of ionising radiation, which would be given in the course of regular six-months MRIs, has the potential to cause harm. That harm, just to be clear, would be the incidence of some of the blood cancers being significantly increased over a patient's lifetime. That is not an insignificant risk. A large dose of ionising radiation at very regular intervals carries that risk with it. You would have thought then that there would be a clinical consensus not to do it then. We got a submission from Neil Pearson, Professor Owensmaier, who is from the University of Southampton and is a cancer specialist. He said, We tend to do ultrasound first because it is cheap, not because it is better, and they also say that MRI is not harmful to patients. That seems to me to be a direct contradiction to your justification for not recognising in something that is very rare, the request from the petitioners that we have MRI rather than ultrasound. It is an unfair characterisation of what we are saying to say that we do not recognise. We are working on the basis that there is no clinical consensus here. That is not what Catherine Calderwood said. You do not recommend not using MRI because increased risk. The evidence that we have is that it is not about risk, it is about cost. No. What Dr Calderwood said—I am sure that she is very able to speak for herself—was that there are risks associated with frequent MRI scans in terms of the increased incidence of blood cancers. There are different clinical views here as to whether or not that risk is balanced by reducing risk in terms of identifying metastatic spread into the liver with the MRI. There is a balance of risk here. We all understand, I hope, that in terms of almost every area of health and medicine, it is a constant balance of risks that we ask our clinicians to take, and that we work from how they balance those risks. That is precisely what Dr Couchie is trying to resolve, is to find that clinical consensus, so that there is greater consistency, but I would refute absolutely that what lies behind that is any consideration of cost. That is, of course, those who provided evidence to you. They are entitled to their view, but it is a view that I disagree with. It is not about cost, it is about being led as the cabinet secretary as I should be by clinical opinion and clinical decision making. The current difficulty is around that absence of clinical consensus, and I am very grateful indeed to Dr Couchie for trying to help us to resolve that. You would accept that part of the problem is that there are so few people who have that condition that, while you are doing research and trying to establish the balance of probabilities and the balance of risk, there is a very small group of people. There is not a body of evidence, and if you wait for the body of evidence, perhaps those people have been denied the treatment that they need. You talk about the balance of risks. Professor Owen Mayer is explicit in saying that MRI is not harmful to patients. In the context of the risk that they may be facing, if not being given an MRI scan, would you not accept the general view that you have expressed about MRI being bringing its own risk is something that should be recognised against the risk of the experience of those patients? You have exactly encapsulated what those clinicians are trying to resolve, led by Dr Couchie. I do not think that it is accurate to say that we are waiting for a body of research. We have a group actively engaged in the absence of being able to secure UK-wide participation in trying to resolve that at a Scottish level and reach a level of clinical consensus, which then addresses many of the issues that the petitioner and members of the committee are raising. It is not about long-term research. It is about trying actively to work, and they will report shortly in June to see if it is possible to have reached a greater degree of clinical consensus to guide that work. However, there is, as you have said, a clinician who believes that MRI scans do not carry risk. There are clinicians who would come forward and say, yes, they do. That is exactly at the heart of the matter. The balance of risk is that the patients themselves are saying that they are being denied, and if they lived in other parts of the country, they would not be denied. I am sure that you can appreciate from their point of view that this is not a theoretical argument about a balance of risks. It is about their sense that they are not having access to treatment on the logic of an argument that has been propounded by Catherine Calderwood that is not agreed by everybody within their medical profession. They do not accept this question—presumably they do not accept it—or they would not be able to access this routinely with that condition. They are routinely given an MRI scan in other parts of the United Kingdom. As I understand it from what Dr Calderwood has said and what I understand from what I have read, it is possible that there are areas in Scotland where people will move to the MRI scan and not ultrasound in those circumstances because there is a difference of view between clinicians about what is the most appropriate next step. I am not dealing with this—absolutely not—as some theoretical debate. I am very conscious of the impact on individual patients, but it is not for me, as a Cabinet Secretary, to overrule clinical experts in this area, but rather to be grateful to Dr Couchie for the work that he is doing and look forward to his report and how he recommends that he and his fellow clinicians should proceed. I appreciate that. I absolutely appreciate that nobody is suggesting that you overrule clinical evidence. The problem is that the petitioners repeat the sense that, because their condition is so rare, then it is not that it has been overlooked but it is not properly understood and there is not a body of evidence. They therefore feel that they are further punished in the sense of the way in which the condition affects them, because there is not enough evidence of it. However, can I ask Maurice Corry? There are also concerns that there is a large proportion of patients in Scotland whose risk status is unknown. Mr Galloway's report suggests that this is a consequence of many issues, including some missing biopsies and a metastatic spread of the disease being picked up too late. How would you answer the point made by the petitioner, Mr Galloway, that the ocular melanoma patients should be treated as at high risk? Mr Corry, the petitioner has to be congratulated for bringing this very rare condition to a committee like this. In doing that, to highlighting what, as I have said in answer to Mr McDonnell's question, is a condition that in fact most healthcare practitioners will not even have heard of, let alone come across in a lifetime of practice, because it is so rare. I think that the highlighting of the condition has led the two experts in Gartnavel hospital to go back to look to see, to convener's point, about what evidence we can actually get from the small numbers that we have in Scotland. I understand that there is an audit being performed of the cases in Scotland that we have, so that those are cases from the past and looking forward. What those audits are aiming to do is to tie up exactly where you are highlighting via the petitioner that there are gaps in our data, so that each of the guidelines that we do have where there is consensus would state that biopsies would need to be done, that certain tests, certain amounts of follow-up with periods of time, and that the specialist centre is co-ordinating all of that. What we will have with that audit, which I do not know the publication date, is firstly more knowledge of the disease as it is across Scotland with the people that we have audited, but also where the gaps are. As happens with many of those rare conditions, people obviously themselves want to be treated closer to home for some, perhaps, of the treatments. For example, having an ultrasound, if you are living far away from Gartnavel, you have your ultrasound in your local hospital. The important part that the audit will pick up is, are those people having the treatments that they should have, as if they were in the specialist centre? Are we giving the right treatment at specialist level, whether that is being delivered locally or in Gartnavel, because we would not want a situation where patients who were living locally to Gartnavel or travelled there were able to travel, were getting a specialised service and others were having a service locally that did not tie up, did not co-ordinate. I think that that audit will, I hope, highlight any gaps that there are with a view to improvements in some of the data issues that you have via the petitioner highlighted. If I may, convener, therefore the heel that out of this report, which hopefully will be published in June, it will also look at the determining of risk, correct? Yes. If I can just add to that, the updated guidelines, which come from the work that those clinicians, imaging experts and involving patient are doing, will consider new evidence on genetic risk, which will inform the definition of high risk. Right. Okay. Can I just have one final bit here? Would it draw on the evidence in England? I actually have my very close friend's son who has this problem, and he has been caught, fortunately, positively, by having an MRI scan and has the continual six-month situation. It does not seem to anybody. He is a runner. He is doing a leading normal life, but he had to come down and meddle in discharge from the army from the special forces. It is a great, challenging situation, but the system in Hereford picked it up, the system in London picked it up, and so far it is clear. Will the author of this report draw on the English results as well? I understand that they are reviewing all the evidence that is available, and the plan is that they will, using that evidence, using what we have in Scotland—obviously, small numbers—pull together a consensus then with much more standardised guidance for use across Scotland. I do realise that in England there are patches where it is better than others. For example, Liverpool and Southampton are extremely good, and I believe that Sheffield is coming up behind that. Therefore, I think that it is important that we look wider than the board of the Scotland. Absolutely. David Torrance. Thank you, convener. A petitioner has constantly made a point that ocular melanoma patients are only referred to ocular oncologists, but that it should be seen by a medical oncologist with experience in liver disease. What is your opinion on that? My understanding is that, in terms of the treatment of their ocular melanoma, they are seen by that specialist. However, where the cancer is detected as having spread to another organ, it will be the oncology specialist in that organ, who then picks up on that treatment. Can I ask the petitioner and Mr Galloway to present further arguments about the benefits of MRI that are supposed to use of ultrasound? Those include access to MRI. They can often be arranged in some place in England by identifying and explaining risks, but this option appears to have been closed down to patients in Scotland. The option of joining clinical trials, which offer new and promising therapies, is denied to patients who do not have an MRI. Are there any particular barriers or challenges that the committee has not yet been informed of, which prevent ocular melanoma patients from accessing MRI scans, apart from the points that you made earlier about risk, which are obviously a matter of dispute? My understanding, in terms of that latter part, is that there are no other factors in the way. It is around this absence of a consensus around the balance of those risks, which, as I have said earlier, Dr Couchy, is trying to help to move us forward by looking widely at all the evidence that is available, involving imaging expertise, the patient's experience and so on. I do not know of any additional barriers to that. If you do not get an MRI scan, you cannot get the clinical trials, which may help your condition, so it is clear that you can see from the patient's point of view why there is an incentive to have an MRI scan rather than an ultrasound. I understand what the petitioner is saying. Does that not change your view on what should happen then? In truth, convener, as an unmedically qualified cabinet secretary, it should not change my view. What should change my view is the work that is coming from those clinicians and imaging experts with that patient experience, which I expect to receive in June. I think that both the petitioner and others would be reassured that it is not an unqualified politician who is changing their view and reorientating how clinical care is delivered, but clinicians themselves. What is clear to the petitioner is that there are clinicians who believe that the approach that is being taken currently for them is not the right approach. It is not that you have not got clinical evidence that is about which clinical evidence or the balance of clinical evidence that you respond to. I do not believe that that is the case. I am not responding to one set of clinical views over another. I am looking for those clinicians to find a way of reaching a degree of consensus that allows us to move forward that is based on all available evidence. That is exactly what I am doing. You would at least concede that the committee has been given evidence by some clinicians that the approach to Scotland is disadvantaging patients because they are not routinely getting MRI scans and go back to the question from David Torrance that, because they go to anocular oncologist rather than going to somebody who has broader issues around liver, there may be a delay that is causing problems. I will ask specifically about the amount of time that you have given to the petition. Over the course of consideration of the petition, there appears to be some difference of opinion over the merit of peer-reviewed evidence. The Scottish Government has indicated that the Scottish guidelines group will review articles. Is this being done? Are you aware of any recent developments in that regard? On that later part, Dr Calderwood will give an initial response. I may add to it, but for the record, I absolutely appreciate that the committee has heard from clinicians who believe that MRI scans should be the first port of call here, but I am saying that there would be other clinicians who would come forward, equally expert in this field, who would come forward to this committee and present the opposite view. Here we get to the crux of the matter and what we are trying to resolve. I will ask Dr Calderwood to respond to your question. Clinicians who believe that people ought not to get MRI scans—is that what you are saying? Sorry? You are saying that people would give an absolute opposite view. What clinicians believe that there ought not to be an MRI scan for people who have this condition? No. It is whether or not, in terms of the balance of risk, there are clinicians who believe that the risk of frequent MRI scans is outweid by the benefit of having those, and others who take a different view from that. There are not explicitly clinicians who have said that, in this very rare condition, that they believe that there is too much risk to give them an MRI scan. That is not the opposite of what Professor Owens Hire said. I think that what I was trying to say to you is that, depending on the clinicians that come before the committee to give evidence, you will get different views. I do not think that that is disputed. With respect, the cabinet secretary said that the opposite view—we have not had evidence that there is an opposite view to the fact that those patients would benefit from an MRI scan for their condition. What you are saying is that there are people who are cautious about the general implications of MRI, but it is not addressing the specific issue, because this is such a rare condition. We do not have clinicians seeing the opposite of what Professor Owens Hire said. They may be reluctant to take a complete view. They say that their general view is that there may be a risk attached to MRI. They are not explicitly saying that, for this condition, there is too much risk in taking an MRI scan. No, an MRI scan. My apologies if I have used the wrong words, but there is a view among clinicians that the frequency of the MRI scans that would be required poses the risk precisely, as Dr Calderwood outlined. With some conditions, there will always be risk, as the balance risk has said that, but to be clear, the committee has not received evidence from clinicians who said that, for this condition, there is too much risk attached to giving a routine MRI scan. To be kind about it, the jury is out on the question, and you are saying that you hope to have an answer to that question by June. What I'm hoping for by June is the report from Dr Couch's group, as far as they can make progress in that matter. On the other part of your question, I think that Dr Calderwood wanted to provide some information. I think that, convener, you were asking about this Scottish guideline group looking at peer-reviewed evidence. I can get you a note on that to confirm whether that has been done. I don't know whether members of the committee have final questions, but I want to ask, finally, once Dr Couch reports, what's the expectation of what happens thereafter? Will that require further time or delay, while standardised guidelines are developed? I think that we would want to write to Dr Couch to perhaps give evidence, because we recognise, as the cabinet secretary has said, that there is clearly working done in this. We are not suggesting that the work has not been done in it, but I wonder when Dr Couch reports, what's the next stage? Dr Couch's work that he is leading is to develop Scottish guidelines on liver surveillance. The report that he will bring forward will, I anticipate, include those that are revised and introduced Scottish guidelines on liver surveillance. As I said earlier, it will consider new evidence on genetic risk to inform the definition of high risk and advise best approaches for long-term follow-up, including continuing to offer local services along the lines that Dr Calderwood spoke about earlier to ensure greater consistency of approach and access to services. I think that one of the advantages is that the two doctors are the specialists for Scotland. The two doctors are seeing every patient with the diagnosis and also seeing them for regular follow-up, so that, in contrast to some of our more common cancers where there are lots and lots and lots of clinicians to be communicated with, we would have guidance produced by this group, where there are only two specialists seeing all patients and making sure that their appropriate follow-up is done, whether that be locally, but they will also be following them up in person in Gartnavel on a regular basis. The implementation or any thought about delay in this is removed because those two individuals are involved with every single patient. The report comes in June and the guidelines are implemented from June. Yes, if that is how they have written them as guidelines to be implemented. They are writing them for themselves, not for other people in that they will guide the scanning et cetera that we are talking about in this debate, but the people who are pulling together the evidence are the people who are implementing it. Have you seen the terms of reference for what Dr Geitch is proceeding with at the moment? I have not seen the terms of reference of what this report is going to hopefully produce. I have seen a summary of what the cabinet secretary has read. Therefore, in terms of reference, that is black and white. I have not seen them. I have written them as formal terms of reference, but I have seen yes. Have you signed them off as being appropriate? I do not sign off. That would not be appropriate. Does it include anything in the coming back to the chair's comment about MRI scans and the risk? Is there a section 8 that is going to address the scientific evidence to the risk element of multiple MRIs? Is there anything in there? My understanding is that the evidence is being pulled together to give guidance on what the routine management of imaging for follow-up for those patients should be. That is clearly in the terms of reference saying that it is scientific evidence. So, they will need to gather what evidence there is in order to make some standardised guidance, as we would in any case. You cannot say here today that that is clear in the terms of reference. Sorry, we are talking about two different things. What I am understanding is that they will produce guidance on the imaging that will be recommended for follow-up of those patients. The piece below that is that I do not know but could ask to see the terms of reference as to exactly what they have committed to. In some of those rare conditions, the scientific evidence is of such small volume that there might have to be some other ways of coming to a consensus. Now, whether that be because there would be a shared decision making conversation with the patient or whether that would be a consensus among experts rather than purely on scientific evidence if that does not exist in volume, but I am now talking about detail that I have not discussed with the chair of that group. I can get you the terms of reference if that would be helpful. I think that it would be good because I think that this is such a question, as the chair says, about the scientific evidence. We have got to be clear where we are on MRIs. I visited a nuclear power station recently and there are very clear guidelines on that, but those are done by scientists. The users of science are the clinicians. Are you with me? We need those scientists to give clear evidence on that. I am very surprised that you have not got a clear view of the terms of reference on that specific area. I would not routinely see that sort of detail, Mr Corry. What I would say to you is that, given that we are in the situation that we are in, the scientific evidence must not come down very clearly on one side or another, or we would not be here. No, granted. That is a circular argument, isn't it, that the petitioner finds it difficult to break into? Can I maybe just finish, unless there is another question? I just want to finish off with a bit from Ian Galloway's submission, which I think you may not be able to respond to, but he makes this point. I think that it is quite a powerful one that maybe you would want to reflect on. He says that around 50 per cent of all oculin melanoma patients have the disease return, and in those 90 per cent or so are in the liver. The same huge figure, which is considerably higher than many other cancers—so it is a figure of 50 per cent—will be the proportion of those whose risk is indeterminate, whose cancer will return. That is a significant proportion of our patients at risk who are not, in his view, appropriately scanned. We should also note that pharmaceutical companies and those sponsoring clinical trials will simply not permit ultrasound scans a sufficient evidence of disease spread, which is why they demand MRI. We consequently deny, in his view, this opportunity to our, quote, indeterminate risk cohort 2. Do you understand why this has become such a significant issue for the petitioner and those supporting her? Yes, I do understand that. I think that our specialists in Scotland at Gartnavel also understand that, too, which is why they have initiated and are leading the work here to try to address some of the issues that the petitioner is raising. I think that, with that, we have probably reached the end of our consideration of this petition. Again, I think that it has been very useful to try to tease out what the issues are, particularly that I have driven the petitioner to bring the petition to us and the evidence given by Mr Galloway. I wonder in terms of action. I think that we are saying that we would want to perhaps hear from Dr Couch. I think that it would be very useful to hear about the work and, in terms of, quite rightly, the cabinet secretary meets the point. Those are clinicians working in the field to have a great deal more expertise than us. I think that we would also want to hear from the petitioner, particularly with Mr Galloway, but others have an interest in responding to the evidence that they have heard. Is there anything else, Brian? I agree. I think that it is important here that we are able to at least link up the concerns brought by the petition to the evidence gathering that the clinical experts are doing. At least, they are aware of the concerns that the petitioner brings when it is really useful. I have a scientific side of the risk for MRI, as well. We can take that forward as well. In that case, we want to thank the cabinet secretary in relation to his petition. In order to be charitable to us all, I suggest that we take a five-minute break and we will suspend. If I can call the meeting back to order, can we now move to the final petition for consideration this morning, which is petition 1690, lodged by Emma Shorter on behalf of ME Action in Scotland on review of treatment of people with ME in Scotland. For this petition, I welcome back Emma Harper MSP and Mark Ruskell MSP. In previous written and oral evidence, we have heard concerns about the consistency of treatment for ME sufferers across different health boards, the training and educational materials, the efficacy of cognitive behavioural therapy and graded exercise therapy, and the level of investment in biomedical research that is recently announced by the Scottish Government. Recent written submissions have been included in their meeting papers, and a further submission received from ME Action Scotland has been provided for members for this morning's meeting. The cabinet secretary is accompanied by the chief medical officer and Elizabeth Saddler. I invite the cabinet secretary to make a brief opening statement before we move to questions. Thank you very much, convener. Again, I am grateful for the opportunity to contribute to your consideration of this petition about ME. Our written submission of 12 July last year sets out, in comprehensive terms, our response to each of the points raised by the petitioner, and I am very happy to answer any questions that you may have on that. However, I would like to start by making what is a fairly fundamental but important point to people living with ME. I believe that this disease is a life limiting disease in terms of the quality of your life. I hear what you are saying to us and that your experience does matter to me as a cabinet secretary. I was pleased to meet the petitioner, Emma and her mother Janet Sylvester yesterday, to hear from them first-hand the impact that ME has on Emma's life but also on the life of her mother as a carer. Although we had limited time in that meeting, it was very helpful to me and I can assure the committee that I do want to make progress and make life better for people like Emma who live with this condition. However, in order to make progress, we have to recognise the position that we are starting from. That is one where there is clearly a lack of evidence, both around what causes ME and from how to treat ME. We need more research into this condition. The only way to build an evidence base that can inform treatment options and the development of service is by enhancing the research base. Government does not initiate research, but we can and will work with the ME community to try to enhance the research base that exists. Over the past 18 months, we have also been developing Scotland's first national action plan on neurological conditions in co-production with partners and stakeholders, including people living with neurological conditions, their carers and families. That is a wide-ranging five-year plan that has been welcomed by the neurological community in Scotland. I am aware that we have had engagement with the ME community as part of the development of the draft plan and that feedback was considered by our national advisory committee during the plan's development. As this is a broad plan that aims to make improvements for everyone living with neurological conditions, it does not include conditions-specific measures. However, we will continue to take any feedback that is received through the consultation process on board. The consultation is open until 8 February, and I encourage people to continue to participate in shaping the final plan. Finally, we will continue to work closely with others, including the third sector, to support the work that they do for people living with ME. In recent years, we have invested just under £0.5 million in funding towards that purpose, and I now look forward to taking questions from the committee around the three main areas of the petition. I am sure that the petition is very much appreciated, the opportunity to speak to you directly, and I am sure across the committee that we have had representations from people who have ME, and my sense is that that very strong feeling of not being believed and, as a consequence, being given treatments that actually make things worse compounds the ready challenges and circumstances in which they find themselves. You spoke about the national action plan recently published by the National Advisory Committee on Neurological Conditions, but as the petitioners note, there is no data on the current prevalence of ME in Scotland, so do you believe that the national action plan can be relevant to people with ME, given that there is such a lack of data and a lack of understanding of the illness amongst neurologists? The current draft action plan will be enhanced by the contribution that ME action and individuals living with ME could make to that consultation to help us to understand better what is needed in relation to that action plan from those individuals. I completely take their point about the absence of data and research on this matter. What the national action plan is trying to do is not condition specific for any in particular neurological condition. It is aiming to identify, if you like, a common set of actions that should be taken that would assist individuals living with neurological condition regardless of what the specific condition is. In developing that, I expect, for example, those living with ME to say that that set of actions are fine and that they work for us, but that they have missed other things that are specific to us that we need. We would then want to look at that and work with them to see what more we would need to do. If you like, the absence of research is that the petitioner recognises and I recognise and perhaps we might want to go on and look at what more we might do there as a Government in that regard. The absence of data means that, quite rightly, we should be working from their lived experience of this, and that is why I need not only that very brief meeting but perhaps further discussions, but I need to hear from them into that draft action plan consultation. Thank you very much for that. Moris Corry. The data on the number of people with neurological conditions that are included in the draft action plan was taken from ISD data, and we absolutely recognise that it is not complete and it does not include people who have ME. There is a specific commitment in the plan, which is about improving that range and depth of data about the numbers of people. From other sources, we estimate that there are around 20,000 to 21,000 people in Scotland with ME, so it is a prevalent disease across the country. The ME community has been very active in engaging with the development of the plan. For instance, we did some work around a lived experience survey with the health and social care alliance to get the views of people as part of the development of the work, and 33 per cent of the responses to that were from people with ME. We are seeking to go out and get the people's views, and we are absolutely committed to improving the data on the numbers, which could then be followed up by research, potentially. This is a condition that I was aware of 30 years ago. I worked with—I mean, there was a lot of skepticism and probably very unhelpful commentary around it in the 80s, but I worked with one specific colleague who had the condition to—it was absolutely evident to me that this was a significant problem. Do you have a view of why 30 years on, almost they are still at the point of proving that they exist, that they do not appear in the data? I am going to ask Dr Calderwood to give some response to that point. Like you, convener, I first came across people with ME as a junior doctor in Glasgow, where I did a regular clinic at Rockhill hospital in Maryhill. It was very clear to me then that this was a condition that really was very debilitating. It is a very complex condition, as you know, and the WHO defines it as a neurological condition, but it is a diagnosis of exclusion. The diagnosis of exclusion means that people are coming forward with a range of symptoms, and as you know, the range of symptoms is quite wide. The range of the effect on a person's life is also very broad, so symptoms can range from nausea, from dizziness, extreme fatigue is always there, which is not helped by any amount of sleep or rest, muscle pain, the inability to be able to perhaps have enough energy to get out of the house in extreme cases, and a wide range of symptoms and also effects in between that. From the most severe people who are bedbound and have an extreme sensitivity to light and noise and really have an extremely poor quality of life, to other people who have an ability to perhaps have a job that they manage their illness. We have something that is, in scientific terms, somewhat unusual in that we have not got a test, we have not got biological markers, we cannot do a blood test or an imaging test that comes back where the report says that this person has ME, and therein lies much of the issue. That is why I think that the many years since you and I first had contact with people with this very debilitating condition has not moved on. The second part is that in not having a way, a means of diagnosing, except by exclusion, we also do not have a cure. We have not got a mechanism by which to create medication or find a treatment through some usual modality in medicine to actually treat people. Without knowing the cause, we have not got a way of researching how a cure would be best found. When I look at the literature across the world, this is what is being struggled with. Currently, in Australia, there is a committee with presenting evidence that is very similar, grappling with very similar issues that our petitioner here has brought forward. However, we know across the US and other countries that exactly this point that you have brought forward is very prevalent, that there does not seem to be a recognition. We are talking about something that we have been aware of for many decades without appearing to have made much progress. I hope that, given what our petitioner has brought forward, we in Scotland may be able to start to move forward rather than saying that this is something that cannot be done. Thank you very much for that. I think that it is very useful. Will you ensure that adequate resources are going to be made available to the information gathering group so that we get as much data as possible on the prevalence of ME in Scotland and also to ensure that no stone is unturned? Yes, we will. As Ms Adler said, part of what is in the draft action plan is a commitment to improve data collection in the data and the sources of that. When that draft action plan becomes a plan, the commitments in that will be resourced. That will follow on from when the draft plans are forward and you will then make that commitment to make sure that it gives the end results that we are looking for. That it produces improved data? Never, in data, yes. Sorry, that is what I mean. Thank you very much. I am continuing with the issue of resources on your plan to enhance the research base and for the record. Can you advise us that the cabinet secretary of the Scottish Government will provide funding for a patient-led national ME strategy to address the issues that have been raised in the petition and the evidence that we have seen to date? I think that there are a number of factors in that. As I understand the issues that the petitioner is raising and from the brief opportunity that I had yesterday to have that personal conversation, there are issues around what can be done to enhance the research base here, picking up on Dr Calderwood's point about this being a diagnosis of exclusion, so what can be done by way of research to try and move away from that to see if there are other ways of reaching that diagnosis and then from that how that might be treated. There is that element and we need to look at it. I am very committed with Dr Calderwood and the chief scientist that we heard earlier, which is part of her locus inside the Scottish Government, to look at how we might enhance the existing research base. I think that it has to include reaching beyond Scotland in terms of, as Dr Calderwood said, there are other countries grappling with similar issues, so we need to connect with where they are and what they are discovering so that we can enhance what we have. I think that we also need to look, though, with those who are living with ME about what they require in terms of care and support, so not waiting until we have a better research base and greater clarity on what treatment options might be appropriate, but right now people are living with ME, so we do need to look at the work that needs to be done in order to increase awareness and understanding of the condition and, therefore, from that, what people need in terms of care and support. We do want to work with ME action and others to try and understand better what needs to be done and then put that in place. I am not sure that that completely answers your question, but I guess what I am saying is that I need to know what it is that we need to do, and then we will bring the resources to bear in order to ensure that that happens. Basically, you are not really out funding for a patient-led national ME strategy? No, I am not. I hope that committee members know that I am committed to the importance of lived experience across a whole range of issues that, as Government, we need to look at in contributing to our thinking and policy development and understanding. It is not exclusive, but it is a very important element. I think that, in this area in particular, where we have at the moment, if you like, perhaps a significant body of experience to work from is, indeed, a patient-led experience. One of the concerns that the petitioner has brought forward is that some health boards are continuing to offer that sort of a graded exercise therapy and cognitive behavioural therapy as a treatment for people with ME, despite there being little evidence that CET is an effective treatment. As you said, cabinet secretary, there is this absence of data, so you are having to rely on lived experience. With that in mind, would you consider requesting that these treatments are withdrawn from the published material prior to any review of the nice guidelines? I am going to ask Dr Calderwood to pick up on that. Thank you, Mr Whittle. From my own experience in the clinics looking after people with ME, it was clear that there is a wide range of the way that this illness affects people. We have heard that from the petitioners and from what we can read. Perhaps the issue with some of the treatments, given that I have said that we know that there is not a cure, is that some of the treatments have been deemed to be the treatment and therefore suitable for all. What clearly has happened is that, in some cases, the treatment has been continued with, despite the fact that the person has not been finding it beneficial or even worse, has actually found it detrimental to their illness. You and I have talked previously about realistic medicine and two of my fundamental principles there are shared decision making and a personalised approach to care. In my view, the continuance of any kind of treatment where that person is telling the practitioner that it is not beneficial and in fact it is detrimental, why would we continue with that? Why would we push somebody into something that is clearly from their experience not right for them? What we do know, though, from some of the work that the pilot in Lothian did, was that some of those therapies have been beneficial for some people. Again, that would be where I would bring that shared decision making and personalised approach to care here. What is right for somebody may not be right for somebody in a different situation. What we must do is discuss this with people. What we would not be doing is continuing a treatment. I know that this has happened and that is a matter of regret. However, for some people, with their sharing in that decision, some of those treatments may be helpful. For that reason, we need to be very cautious about saying that we would withdraw any particular treatment. On the other hand, of course, we must not continue with treatments where, for an individual, that is clearly not the right thing to do. Can I just add to that? I am sure that you know that the Scottish Good Practice statement on ME recognises that some treatments are controversial and that those guidelines are clear that nobody should be required to have any treatment that they do not want. I think that, in a very brief coverage of that, I recognise that that has not been the case in every circumstance. I think that it goes back to an earlier point about awareness and education amongst our clinical community to ensure that they know that there is a Scottish Good Practice statement on ME and that what it says clearly is that, elsewhere, treatment decisions should absolutely involve the patient and people should not feel compelled to undergo a treatment that they do not want. That is the route to pursue here, rather than, given that, for some, there is some evidence that those controversial treatments are producing some benefit rather than withdrawing, but they are asserting that people should be actively involved in decisions around the treatment that they engage in or not. Given the lack of data and the lack of understanding on that, as we have taken evidence from the committee across the medical profession, how are we able to cascade that kind of approach to ME? We have heard a lot of evidence that some medical practitioners still deny the actual existence of ME, which, for an ME sufferer, must be a terrible experience to have. How are we then able to cascade that kind of approach down through into our front-line services, which always seems to me to be one of the key elements? I want to say two things in response to that. Dr Calderwood may want to add to it. One of the things that I do not think would be an especially helpful approach, because there is a lack of sufficient evidence and research, is that if you like to get into an argument with clinicians between those who recognise ME and those who do not, that is where looking at how we can enhance the research base assists us in resolving that particular question, because the absence of sufficient research can be used as a reasonable ground for individuals to pursue different arguments, whether they accept ME exists or not. However, I completely understand more than frustration about how that must feel if you have that condition and it is not accepted as a medical condition and is not recognised. In terms of how we enhance that research base, I have asked the chief medical officer to consult with the chief scientist about what more Scottish Government might do in order to assist our academic communities to increase the level of research. We have provided some initial funding to support a PhD student to begin some of that work, but there may be more that we can do in that regard. In terms of how we make sure that good practice statement is more widely understood, that is a piece of work that I think we need to take away and look at through the various networks and so on that we have both inside the clinical community, through the chief medical officer but also through the health board community in terms of my locus, if you like, how we increase awareness and understanding and, alongside that, that statement of good practice so that we can reduce the incidence of individuals feeling that they are being compelled to take a treatment that they do not want. Given that we have been aware of the length of time that we have been aware of, you are sure that we are in a situation where nobody should deny the existence of the condition. We cannot accept medical practitioners taking the opposite view to that, but we are sure that that is something that has to be tackled. We could tackle that right now. I do not know if Dr Calderwood wants to pick that up. I think that, again, due to this petition, Mr Whittle and those very statistics that show that such a large number of the medical profession do not accept as a condition, I believe that it was up to 50 per cent of general practitioners. We undertook to write to the chair of our academic medicine board for medical schools, Sir Peter Rubin, and he has distributed that letter to the deans of the medical schools in Scotland with some information about highlighting that condition and some of the detail that I gave earlier to medical students so that that is incorporated into their curriculum. Now, we cannot dictate what medical schools put in their curriculum, but I think that while not a solution immediately, if we are teaching our medical students, therefore, our future doctors, about that condition, that will change attitudes. It is not something that has previously been focused on. I just put an absence of doubt. There is no way that we can turn around and say that ME does not exist as a condition. In a situation where we are just now, there is no way that ME can deny that it exists as a condition. If that is the case, surely there must be a way to cascade that down into the front line staff that no longer will be acceptable to deny the existence of ME. To confirm that the WHO has a definition of ME-slash-chronic fatigue syndrome, yes, so it is in a world health organisation definition of a disease. Therefore, we cannot accept that any of our medical practitioners deny the existence of it and therefore deny access to treatment. That world health organisation definition, this Government, absolutely accepts. We would be saying to practitioners that the world health organisation accepts this condition exists, this Government accepts this condition exists, NHS Scotland accepts this condition exists and therefore we expect you and carrying out your clinical practice to operate from that basis. There is no reason why we would not make that crystal clear, and I am very happy to make that crystal clear. However, as it is frustrating, what we all have to accept is that it is nonetheless right, and we accept it across the whole spectrum of medical conditions, that the clinician's decision in terms of their views and their decision making and how they work with an individual patient is not a decision that can be countermanded, if you like, by me. I cannot instruct them to do that. I can say what NHS Scotland's position is, what the Government's position is and therefore what I expect. However, I am not in every clinical situation and consultation. What I can then do is make sure that they are aware of and understand what the statement of good practice says and our expectation that they will work to that statement of good practice and then look to see additionally how we may provide support to individual patients in their right to not undertake treatment that they do not wish to. There are a number of ways in which you can go about it, but what I cannot do is to issue an instruction to clinicians in that way. I absolutely accept that you would never countermand any medical diagnosis or treatment. I think that the point that I am making is that we cannot have medical practitioners who, before treatment, deny the existence of ME. That is when I am getting to ensure that that is something that we can do something positively about. Mr Whittle, what would disturb me most would be that somebody who is presenting with symptoms, regardless of what that medical practitioner believed or otherwise, if they are presenting with symptoms, they are of course needing treatment and help with those symptoms. We must be able to say that those list of symptoms that I have discussed already are symptoms that need to be treated. I think that where I would like to get to is that some of the frustration that the petitioners and medical practitioners have is that their range of treatment options are limited. They are not knowledge about what the treatment options that might be best is limited. If they then wanted to access some treatments, they are available in some places and not others. Regardless of that practitioner's opinion—let's put it that way—I would say that the people who are suffering from this illness need help. That is where we need to get to is that that help is an appropriate help that is individualised to them as a patient in their own situation and that that help is made available to them. It is very clear that, at the moment in Scotland, that is not the case. I will ask a brief question before I take the next question. You said that people shouldn't be compelled to take treatments, which is entirely fair. Do you think that there is an issue, however, about people being judged when they say that they do not want to do that? I think that we get evidence from Professor Edwards and I do not want to put words in his mouth. My reading of what he said was that there was a false correlation. People benefited from this treatment and the implication was that, as ME patients, they benefited from this treatment. In fact, ME patients are saying that there is nothing to do with their condition and being compelled or feeling obliged or under pressure to take CBT or GET action. Is that actually making things worse? Do you accept that there is an issue here about people being judged? You may say that they are free to refuse, but that in itself then becomes an issue while they wouldn't engage and they are not in—are they being reluctant? Are they just being difficult, however, foods into that narrative? It is credible to me that that situation can arise and from what I have been advised by those suffering from ME has arisen. That is credible. I think that it goes to a lack of awareness and understanding of the condition and how the condition that you mentioned, convener, 30 years ago was unfairly characterised. The individuals suffering from this condition were unfairly characterised. It is fair to say that some of that unfair characterisation persists. That goes to one of the areas that the petitioner is raising and that I am accepting that we need to do much more work on. That is to raise awareness and understanding in order to minimise the numbers of people, be they clinicians or otherwise, who do not believe that there is such a condition. Therefore, act from that belief in a way that is very unfair and debilitating for the individuals who suffer from the condition. The other important point in that regard, though, is that while we are looking to change those attitudes and views, Dr Calderwood's point is that, as a clinician, someone coming to you with symptoms, regardless of your personal view about whether the condition of ME exists or not, your job is to treat and deal with those symptoms and treat that individual and provide them with whatever care and support you can. Some of evidence presented to the committee focuses on the investment recently announced by the Scottish Government. For example, the petitioner notes that an investment of £15,000 per year over an extra year equates to £70 per patient. How would you respond to his concern? Do you consider that his investment is sufficient to build on research capacity? That is the support that we have given to that PhD student in order to begin some of the work that looks at how we might enhance the research base. I believe that it was ME Action who approached us for that support and we have given it. That does not preclude what I touched on earlier, which is my ask of the chief medical officer and, through her, the chief scientist to look at how we might further support an enhancement of that research base. That is not the only thing that I hope that we will be able to do in that regard, but we responded to our request from ME Action to support that PhD student to do that work, along with Professor Ponting. We have responded to that, but that is not the end of the story. Brian Whittle I think that we have agreed that there is a lack of evidence around the understanding of ME among healthcare professionals. In the national advisory committee on neurological conditions report on the lived experience survey, how can we ensure that NHS education for Scotland provides that effective education and training base on the most up-to-date biomedical research? I think that Ms Saddler wants to tell us where we are with NHS Scotland. I think that we have also done in this area is around we have given money to Action for ME to support the funding of information for health professionals around their website, now hosts a series of materials on good practice and they provide webinars for shared learning, local models of care and good practice. They have also worked with NHS inform to put the information on to NHS inform around ME. In terms of NES, they are doing some work— Sorry, they are doing a training module for GPs, which is around raising awareness and support for the GPs. That will be coming in their next iteration of work in the next financial year. How do we ensure a positive uptake on that kind of training webinar type? I think that we are discussing this now, whether that be in the modules or webinars. How do we ensure that there is a good uptake on that? On the modules, my understanding is that when NES—Education for Scotland, NHS Education for Scotland—considered looking at this, they undertook a bit of work through the GP group that they work with to see how it would be responded to. They got a very positive response from GPs that they would like to have such a training module available to them. NES are now undertaking that work and therefore we would, on the basis of the initial positive response, like that additional training. We then expect the uptake of it to be positive, but we would always look to see how positive that uptake was and what more we might do to encourage GPs to undertake that additional training. I am conscious of time, because we really want to be finishing wrapping this up by 25.2. We have to stop by 22. I am going to ask our two colleagues, who are not going to members, to make contributions now. If there is time left, there are a number of other questions that we want to raise, but I am keen to allow you to participate. Mark Ruskell, you are next. There have been comments made about enhancing research. I wonder to what extent the provision of specialist support on the ground can help develop that research and help to fill the gaps in terms of what is effective support and treatment for people with ME. There seems to be an issue here, particularly in Fife. It seems to be quite a popular support service that has been put in place. It has become very overstretched, but that is not the kind of support service that is being offered across Scotland at the moment. I am interested to know how the roll-out of particular approaches to supporting people with ME can be part of that growing knowledge and understanding about how to effectively treat and support people with the condition and how we can enhance that as part of a package of research. I am going to ask Dr Calderwood to answer that before she does. I appreciate your point about our timing. I have a general question at 22. I think that I am first up, so I would appreciate that move on time. There may be a couple of questions that we want to direct to you that we will just send to you. I think that that would be fair. I think that you are more than in your corner this morning. I am a bit to you. You have got the first question up as well. Thank you. I appreciate that. I will try and finish by half-pass. We want to respond to that. I will take Emma, and I think that the committee will then come to conclusions rather than dealing with the last few questions that we have, but we will send them to you. Thank you. I would like to congratulate the petitioners for bringing this illness. In what we have said, it is something that has been denied, that has been ignored, that has been something that there has not been provision of treatment, nor, indeed, to Mr Torrance's question that the provision of funding for research has been in other neurological conditions. I think that when we pull together what the petitioners and I think that some of them are here today have bravely brought forward, is that what we need now in Scotland is a co-ordinated approach to the illness of ME. What we are proposing is a working group that will look at the provision of services. They would take the good practice that you are talking about in NHS Fife. We will obviously need to scope out what the ask is and what we note up to 20,000, 21,000 people in Scotland. Each GP practice has around 20 patients. We will look at the Lothian pilot where there were some interventions and effective treatments. We would take where we have good practice in Scotland and bring those people who have been involved in that into a working group for this condition. I think that we have a whole series. I can see it scoping out already to Mr Whittle's point about the education and awareness-raising, the availability of treatment and how to provide those treatments. At the moment, of course, we have not got a cure, as I have said. We have some treatments that work and some that clearly do not work for everyone. With all that going on in the background, there is enhanced research. I think that we need to be aware that we in Scotland will probably need to join up on the research front, probably globally, because, as I said, the other countries are really in the same position as us struggling with many of the issues that the petitioners have brought forward. What I would not want is that we set off something that is delayed because people are suffering at the moment. What we can do, even while we wait for the nice guidance that is due to be published in 2020, is that we in Scotland can set up this working group to tackle issues that we can tackle while we await some of the evidence. We can tackle that with some of the good practice that we already know works in places such as NHS5. Emma Cymru. I will be very short. I am aware that there is a commons debate today led by SNP MP Carl Monaghan about calling for more funding for biomedical research. Both Westminster and Scottish Government are welcome, but I am just going to follow it and any questions that I will be happy to send on and raise them later. Thank you very much for that. I thank the cabinet secretary and our colleagues for attending. We are now going to consider the petition. I think that it will be helpful to you if you want to leave your permission to leave if you need such a thing. Again, thank you very much for your attendance and the seriousness with which you have addressed all of our petitions today. I will spend very briefly to allow you to leave, because we always have to reflect on the evidence that we have heard today. I should have said at the beginning that I want to thank all those who provide submissions to the committee. It is quite a significant number of people who have responded to the petition and who have an interest in it, and that has been helpful to our consideration. Subsequent to the evidence from the cabinet secretary and our colleagues, we would want to invite the petitioner to respond to the evidence that is heard. Again, to other people who have an interest, we want to respond to what they have heard too. Is there any other comments or actions that we want to take? I think that, first of all, to the petitioner, the importance of bringing petitions to the committee and how that raises awareness of those issues is very evident today and in itself is going to be really helpful. I think that there are two things for me. The one side of it is the continued research and research into treatment of ME, but probably the thing that we could impact the most right here right now is trying to go over this hurdle of medical practitioners who deny the existence of ME. I think that there are obviously some very specific actions that the Government can take to cover that. I think that that is something that I want to put that on record and then look at how we as a committee can help to facilitate that or can push that along. Anyone else? There is a royal college of GP online training programme for chronic fatigue syndrome and mylogic encephalomyelitis, so it would be interesting to see what the uptake of the GPs is for that online training programme. I think that it picks up on Mr Whittle's point. It is still a concern that 80 per cent of neurologists do not see this as a physical condition, so there is a mismatch between what is actually happening on the ground and how this condition is treated and the commitment to research that we have heard from the cabinet secretary and others this morning. I think that the right research is significant. The area that we did not really focus on was one question that I think that we can direct to Government, which is around the clinical nurse specialist role. They describe it as pivotal, but there is only one clinical nurse specialist for people with ME in Scotland, and none of the additional investment has gone towards nurses for people with MEs. That is something that we would want to ask. Obviously, we are conscious of the pressures on the cabinet secretary's time, but I think that if we can get response from the petitioner and any others who are interested in very specifically around this question of GP uptake and the role of the specialist nurses and whether there is actually sufficient of them, and I guess the point that Mark Ruskell also made about the level of support that is out in the system, which is not clinical support, but the other kinds of support would be interesting to know as well. Is there anything else? No, in that case, I thank you all very much for attending, particularly to visitors Emma Harper and Mark Ruskell. I do think that we want to put on record again our appreciation that the Cabinet Secretary for Health and Sport has spent such a significant amount of time with us on what are very important petitions. Obviously, we feature a very small part of her very broad dream. Again, that is very much appreciated, so I thank you all very much and I will close the meeting.