 Good morning and welcome to the sixth meeting of the Covid-19 recovery committee in 2023. This morning, we will continue our inquiry into long Covid, and I would like to welcome to the meeting Ewan Dick, head of the chief scientist's office, Professor Dame Anna Dominaciek, the chief scientist for health at the chief scientist's office, Professor Chris Robertson, professor of public health epidemiology at the University of Strathclyde, and Professor Kay Cooper, clinical professor of allied health professions at Robert Gordon University in NHS Grampian. We also have Professor Edward Duncan from the Nursing Midwifery and Allied Health Professions Research Unit at the University of Stirling, and Dr Janet Scott, who is a consultant in infectious diseases for NHS Highlands, as well as an affiliate senior clinical lecturer at the MRC University of Glasgow Centre for Virus Research, who joins us online. Good morning and thank you for giving us your time this morning. We estimate that this session will run up to about 20 to 11, and each member will probably have about 12 minutes each to speak to the panel and to ask questions. For Janet, who is attending remotely this morning, if you would like to respond to an issue being discussed, please type R in the chat box and we will bring you in. I am keen that everybody gets an opportunity to speak, and I apologise in advance therefore if time runs on too much, I may have to interrupt members or witnesses just in the interest of brevity. If I could ask the witnesses just to briefly introduce themselves and the work that they have been doing, and I will start with yourself, Dr Janet Scott, because you are online with me this morning. Thanks. Do you want just a brief introduction at this point? Yes. I am Janet Scott. I actually just started yesterday in Inverness. I am a consultant in infectious disease and clinical pharmacology at Ragemore hospital. I am part of the long Covid team here and principal investigator of the locomotion study. I am also an affiliate senior clinical lecturer at the Centre for Virus Research in Glasgow, where I have been working till up until now, and where I have been studying post-viral conditions since 2015. Thank you very much, Dr Scott. Can I bring in Ewing Dick, please? Thank you. My name is Ewing Dick and I head up the chief scientist office, which is part of the director general for health and social care within the Scottish Government. Our responsibilities are to look after health, research, development and innovation within the NHS in Scotland. Thank you. Thank you very much. Thank you. Can I bring in Professor Dome... I am sorry. I hope I can answer you. Perfectly. Domi Niček. Thank you. So my name is Anna Domiček. I am a relatively new chief scientist for health in the Scottish Government working with UN and chief scientist office. I started in this role on 1 July 2022, so six months in the role. My background is that I am also a regis chair of medicine at the University of Glasgow. So this is a seconded role and my research and clinical work has been in cardiovascular medicine and cardiovascular prevention over the last 25 plus years in Glasgow. Thank you very much. Can I bring in Professor Kay Cooper, please? Thank you. Yes, I am Kay Cooper. I am a clinical professor of allied health professions, which is a joint post based across Robert Gordon University at Aberdeen and NHS Grampian. So I am a physiotherapist by background, but I am a really an applied health researcher. My field of research is quite varied, largely to date on self-management of chronic conditions, and I am jointly leading a study that is looking at evaluating emerging models of community rehabilitation for people with long Covid, along with my colleague here. Thank you, Professor Cooper. Can I bring in Professor Edward Duncan? Thank you very much and good morning. My name is Edward Duncan. I am Professor of Applied Health Research at the University of Stirling in the Chief Scientist Office Research Unit for Nurses and Advice and Allied Health Professionals. Together with Kay with Professor Cooper, we are leading the study of looking at different models of service delivery for rehabilitation in long Covid research. I am Chris Robertson. I am a statistician by trade working in the maths and stats department at Strathclyde university. I have a joint appointment within Public Health Scotland for the last three or four years. I have been working on a big study of electronic health records within Scotland, the EAVE study, and in terms of long Covid I have been working on the CSO-funded long Covid study using electronic health records from GP data in Scotland. Thank you very much. I am going to move to questions now from members and I will ask Murdo Fraser to please come in. Thank you, Camerian. Good morning to the panel. I want to start off with a question that is probably best directed to yourself, Professor Daimanna, or to you and Dick, from the Chief Scientist's Office about the research that you have been funding looking into along Covid. I wonder if you could tell us a little bit about how you have taken decisions about the areas in which you will fund research and what you view as the priority areas for research to be done. Could I just ask all the research or within the topic of today's discussion? No, only within the topic of long Covid. Before I start it, the UN will add to this, so in late 2020, so relatively early, there was a call for long Covid research. As we described in our written response, there were 35 excellent applications. They were assessed by expert panel as normally chaired by independent chair and with number of experts in the area. Nine projects have been funded. These projects are still in progress. We have described the projects and people who have contributed are here with us today. This was very early days of long Covid, so the projects focused at that stage on descriptive research, describing the prevalence, the symptoms, and multiple symptomatology that really includes all organs, all systems in the body. But there were also, as we already heard, efforts to assess rehabilitation to projects and very interesting projects, including the one published as it happens or maybe not yet published, but available to us all to look in the lenset, the project of data linkage. So these projects have been selected by expert panel and from what we see so far, majority of them have not yet achieved final report. This will happen and will be available online on our website when it's ready. But from what we see so far, the linkage studies, the rehabilitation work have been very well chosen and extremely useful. Okay, thank you. That's very helpful. We do have your written submissions with more detail on the projects that you are funding. Can you tell us anything about emerging findings at this stage? Are there any themes that are coming through that you've seen so far from the research that's being done? So I think mentioned previously Eve 2. I think what we have, what's been released on the lenset as at the moment pre-final review study is exceptional because it looked at 5.1 million adult scots. I'm not aware of previous linkage of that size and that power and potential. So I think extremely exciting to see that such linkage is possible and also that it would be possible to repeat it long term to review that the linkage platform has happened and my colleague on the far right will be much more expert on describing this. So Eve 2 provided a platform that can now be used. This linkage can be repeated as a follow-up of what's happening in Scotland regarding long COVID. I think extremely interesting. The same with colleagues on my left and the rehabilitation. We now know what's happening across Scotland in all 14 boards, in all 14 territorial boards. So we have a baseline. We wouldn't have known this without early stage results from this particular study. So very useful things have happened. There was another smaller linkage study performed by colleagues in Glasgow, Professor Jill Pelin colleagues, also CSO funded, which looked in very interesting way longitudinally 6, 12, 18 months. So I think we already see useful work, but it isn't finished. We need to wait for final reports of all nine studies and only then we can really have a full assessment of what's been produced. Ewan, would you like to add to this? I think you've covered that very well. Anna, I think that's the point that you just made at the end there that we're awaiting the final reports and the peer reviewed articles before conclusions will be made from the findings from the studies. Thank you. Just one more question on this before I move on. Are there any gaps in the areas of research that you think you need to address looking at future funding rounds? There are always gaps in research. That's what research is all about. I think it's clear to me, and this is not me as chief scientist health. This is me as a clinician with years of experience. We need to understand the mechanism of disease. Potentially there is not potentially. There is more than one mechanism. That's what's coming out internationally. We need to find biomarkers that would allow to stratify patients and come with treatments that truly address the precision medicine in it. Treatments that truly address the underpinning mechanism, which might be different in different groups of patients. There is still a lot to do, but it will be done as an international effort rather than our own local effort. It has to be part of international work. Okay, thanks very much. That's very helpful. I wonder if I can move on to a slightly different topic and ask a question to Professor Cooper and Professor Duncan, because I was very interested to read in your written submission your comment around self-management strategies for people with long Covid. You suggest in your submission that the evidence base for the effectiveness of these is limited. You say that your study found that people who were sent for assessment with long Covid rehabilitation are considered unsuitable for self-management. That's quite interesting because it reflects some of the feedback that we as the committee have had from long Covid sufferers. I wonder if you could elaborate a little bit on what your research has been telling you in this field. There has obviously been a great evidence, a great importance given to funding self-management strategies, in part to make interventions accessible to as wide a group of people as possible. That's to be commended. Research for self-management per se outwith long Covid is fairly well established for people with long-term conditions. As a baseline way forward, there's logic to do that and logic to see that. I think that self-management still has to be seen within the context of wider breads of rehabilitation therapies on offer to people. In one of our case study sites in particular, where there is probably the most well-developed rehabilitation service for people with long Covid, where they triage people to self-management, to individualised therapies and to group therapies, they have found that very few of the people who have been referred to their services have been applicable for the self-management strategies. It begs a question to us as to how we appropriate that as a sole means of therapeutic offer for people with quite complex needs. I think that sums it up really nicely. The only thing that I would add is that it links to the sort of looking at who's appropriate for self-management. What we're not saying our written response shouldn't be interpreted as nobody with long Covid is suitable for self-management but there perhaps needs to be more research and evaluation done on how do you work out who is most appropriate for that and who needs the more complex sort of multidisciplinary or professionally led rehabilitation services and also what are the outcomes for people who do go down the self-management route? Is that fulfilling their needs in terms of quality of life and symptom management? Yeah, so what you're saying is that you've done some research but you're only skimmed the surface in effect. There's a lot more work that needs done in this field. Yeah, we have emerging findings that around this topic but yes, we haven't fully evaluated it. The breadth of delivery of self-management really would ask the question of effectiveness of that. So longer term follow-up of is that meeting patients' needs or their other needs not being met would be highly valuable. Sure, sure, okay. Thank you very much. I'll hand back to the convener. Thank you very much Mido. Can I please move on to Alex Rowley? Yeah, thank you convener. Good morning. Could I look at future research because in the responses that we have had as a committee, there has been suggestions to look at the implications, for example, with Covid on NHS workers in the longer term and we've heard from NHS workers in many senses who are being impacted now. So there's suggestions there. There's many written submissions that have suggested, for example, treatment trials need to start now with existing medications. I suppose therefore in terms of further research, how do you prioritise research and are there any plans for commissioning further research in Scotland because the long Covid Scotland told us that in 2029 research projects were funded in Scotland but there has not been any further funding for Scottish research projects since. So given there's a lot of suggestions around what needs to be researched, how do you prioritise and do you have any plans? Will we kick off with him, Anna? Okay, so this is a difficult question for any research system anywhere in the world. So during 2020-21, there was no other research and therefore research was commissioned. All our universities and all clinician scientists in universities and NHS completely moved to Covid research. They didn't do any other research and it was appropriate to commission research. Under normal circumstances we do not do it or very rarely do it and there are two standing committees funded by Chief Scientist Office, Health Improvement Protection and Services Research Committee and Translational Clinical Studies Research Committee and these two committees are open for any long Covid or any research to come and the researchers across Scotland are very aware and in fact there's been recent project, large project accepted there and funded but it's not yet signed up so we can't quite talk about it yet but it will be on the website once everything is signed up. So this is open but I think it's also important to say that the majority of research, health research, clinical research, public health research in Scotland is funded by other sources not locally by Scottish funding. So what we do is we empower and inform all our stakeholders across Scotland very proactively about opportunities with UKRI, UK research and innovation, Medical Research Council, national institutes for health and care research where our clinician scientists have been very successful for example in NIHR, National Institute for Health and Care Research, there were Scottish projects funded to very large sums of money that are currently in progress. So what we've been doing is we've been bringing chief executives or medical directors from this UK wide funding bodies that have very substantial funding for our researchers to be aware of opportunities and this is ongoing, the same is true about major charities that also fund Covid research such as Bretterhart Foundation and others. So I think we do everything to make sure that Scotland and Scottish clinician scientists and public health researchers get optimum access to funding for long Covid and everything else but we do not normally prioritise what they should be applying for. Does that make sense? Does anyone else want to add anything to that? Sorry. If you would like just to re-emphasise some of Anna's really helpfully made points and to refer back to our first answer as well you know in normal times we run two research committees that Anna's mentioned and those committees contain expert scientific advice that advise us on the best projects to fund the needs of the people of Scotland. As Anna said we work within a wide international and UK system where there's a range of funders that are accessible for Scottish research projects and they work in a very similar way to us that they have these expert committees to help us make sure that we're funding the research that's going to have the most impact in the long term. So our prioritisation is through those committees for studies that come to us based on that expert advice and that's what we have done for many many years. I think the Covid situation obviously was a little bit of a different situation and as Anna said at that time the NHS had stopped quite a lot of research and it wasn't feasible to start research in other conditions which is why we focused particularly on a condition that was emerging so it was quite an unusual time that we did that in. Could I ask therefore in terms of this question about previous research what struck me in terms as long Covid started to emerge and people started to to highlight that they were suffering from it was that I started to receive a lot of emails for people who have suffered for years with ME and drawn comparisons with a lot of the conditions that were being described for people who have suffered from long Covid. So I assume that using MEs an example that there's been research and research projects happening in Scotland so if you have these types of similarities are you able to to use previous research? I mean how do you go about that in the sense that that you've got like nurses people working in the NHS right now that are being laid off they're looking for an immediate response. Are you able to look at other conditions and give advice? Could I ask maybe Dr Scott I think is online? Hello. Hi. Yes thanks. You could definitely draw from other post viral conditions. I started advising the WHO on long Covid in about April 2020 because I'd been working with them for the previous five years on post Ebola syndrome. I also treat chronic fatigue syndrome patients but that wasn't my particular area and every virus every post viral condition is slightly different but they have their similarities and the challenges that we faced in terms of getting clinical care at all in terms of getting dedicated clinics and in terms of leveraging research for Ebola patients or post Ebola patients were quite similar to what has been faced by our long Covid patients the sort of stigma gas lighting. People said that they were just feeling unwell because life is hard in West Africa which our research has shown that actually what they're suffering from is persistent virus. What we didn't get with post Ebola syndrome was the research continued on to the important parts of understanding the underlying etiology and getting treatment because what happens at the end of every epidemic is the research funding moves on to the next pandemic. It happened with SARS, it happened with Ebola, all the money went subsequently into Zika and we know when money goes into research during a pandemic that that money will then move on when people stop being quite scared of the disease itself and that seems to me is what's happening with Covid at the moment. However, we can draw from our previous experience and try to do two things. First of all move things forward from where we were with the last disease and second of all do better the next time something new comes along. We have to start research on survivors or long haulers whatever you want to call them at the beginning of outbreaks not six months in or at the end of outbreaks. We have to learn to provide adequate clinical care at the same time as characterising research and I'm afraid I'm not convinced that that second part has happened in Scotland. We've got some excellent rehabilitation facilities but it's mostly virtual and we don't have long Covid clinics and as well as being a very difficult position from a clinical perspective not seeing patients face to face with difficult multi-organ disease that is making it more difficult to participate in the broader clinical trials and research that has been funded throughout the UK. For example, there is a platform for drug trials in long Covid it's called Stimulate CP it's led out of Imperial College but it's running through the long Covid clinics in England. We will try to bring it up to the Highlands but that is a big ask when we don't have a face-to-face clinical service. We have the locomotion study which is potentially a UK wide study looking at different provision of care but there are really more proactive arms of that like testing exactly which interventions are useful exactly what tests do with patients in clinic what is useful what is not useful. We are not really able to participate in to the same extent as our English colleagues again because of the lack of face-to-face clinical clinics. So we've done a great job in Scotland in the linkage studies and I'm a co-investigator on the long Covid study led by Jill Pell and I think that has been a really amazing exercise good big data we're able to talk about things like what is the true prevalence what's the impact of vaccination what's the natural history which is all fabulous but when it comes down to what do you actually do with a patient in clinic do you do a sit-to-stand test do you do a lean test is it useful to screen for cardiac myopathy such as came out of Colin Berry's study in Glasgow does everybody need screened or is it just those with symptoms those are the sorts of questions that we need to think about on a practical level and we aren't really doing that in Scotland because we're trying to treat everybody at a distance we're just using their GP records or their numbers or we're trying to do linkage and that is very cost effective research but at some point we have to develop experts in long Covid and that means actually seeing the patients so we can come up with the right studies and the right questions to move things from characterising which is what we did in 2020 on to as Peset de Minichec says understanding the underlying etiology and then providing proper management strategies and treatments thank you that's very helpful that's my time up convener ask a quick question just something you just said there dr scott regarding the stimuli cp which i haven't heard of before and it's being rolled out down in england is it being rolled out in wiles because i know that wiles is going to approach to the way that scotland's currently doing it well it's open to investigators right across the UK but so far they haven't really stretched further north than i think about Manchester so i am in discussions with them if we can get a site in Inverness we'll certainly broaden their geographic spread but as i said that there are some challenges involved with that so their remit is across the UK but in practice it's mostly is mostly recruiting in england and around southern england at that at the moment okay thanks very much if i can move on to brian wittle please thank you good morning to the panel my you know my my interest really in health is a little bit around gathering of data and deployment of data and and do we have a system that actually allows you know effective deployment of data i guess what i'm looking at here is in practice you know we gather data you know do we have a system that allows that data to be crunched and deployed and the effectiveness would be would be measured and how we end up as treatment to patients and to date we've heard from both clinicians and from long sufferers of long Covid that that investigation that data is not allowing the effective treatment at the front line so i guess professor roverson i would i would come to you given as a statistician and as a non-clinician is that right so i come to you do we do we have an IT system in in scotland that allows that proper deployment of data and sharing of data across the whole system i think the answer is yes and no it has been feasible and the the large eave study that i worked on has data from the health records and gp from pretty well everybody in Scotland the permissions that we had to adopt in order to get access to that data involved in negotiations with the gps who were very very helpful in the in the beginning of the pandemic because they realised the importance of the data but the ethical and governance permissions meant that we weren't allowed to interrogate the gp data itself what we had to do was to pre-specify clinical risk groups that would be important and vaccination data and then having pre-specified that amount of data we were then able to extract it and move it into public health scotland for the surveillance and the vaccine effect studies during the pandemic and also a copy of the data went into the Idris platform for not other researchers to access it in that way so that that worked it was kind of a rolling static extract because we got repeated extracts through albisoft for off the gp data and once it's there because we've got the community health index number in scotland you can link it to all the other data that's available so it gives scotland a phenomenal resource not just for research but for management and surveillance of not just covid but almost any other disease in scotland the recent change and i'm not an expert in this but there are recent changes to move all of the gp data which used to reside in all of the individual gp practices it's now going on to a cloud-based server nss in scotland is getting a copy of that and there are moves afoot for permissions for all researchers and all public health scotland different groups to access that data and when that is in place it will be a phenomenal resource for scotland but there are others around to her more and i've got more understanding of the exact details of that book okay i've got a broadening out to to yourself eun in that gathering of data is you know i've always heard that scotland's fantastic at gathering data we have a phenomenal but our ability to deploy that data in the practicalities which will be how do we inform our gp's at the front line you know what to look for in covid and then how do we deploy some sort of resource to help patients at the front line it's not good that's what we're hearing just now that that element is not good so where are we with that and what and what do we need to do to ensure that our healthcare professionals you know are properly informed about the issues around long covid i mean we even heard some of them still don't believe in long covid and there's a mental the feeling that there's a mental health issue around long covid and reality is you know long covid exists so how do we how are we going to get to a point where we can all this gathering of data is available to our healthcare professionals so that they can deploy that kind of resource super thanks for that question so the chief scientist office works within research development and innovation area of the nhs so our focus is on the use of data for research development and innovation rather than the use of data for more operational reasons so unfortunately i won't be able to address operational elements of your question but i'd be happy to take that back to the office back to the Scottish Government and have my colleagues answer that if that would be helpful but from a research perspective we do put mechanisms in place to help researchers use the data at a national level i think chris mentioned one of the projects that has happened that has been funded through the cso that has done that one gp data very successfully but we do have a range of data safe havens across scotland a national one and regional ones and their role is to pull together data to allow it to be used in research projects and they do that on a bespoke basis when research projects come forward and require that data i think i think all of us recognise that we want that to be more efficient and effective in the future and we continue to work to make that happen i think you kind of you kind of led me into i don't know if the other one of the some of the else on the panel can can help me with this because at the end of the day as i said the quality of research in scotland is is well renowned but in the end it's how you deploy that in an effective way on the ground level and i think i don't know if there's anybody else in the panel can can help me with that of how that i'm looking at you dr scott um they can maybe help me at how that data is being deployed to help patients because at the end that's what we're trying to do dr scott that's part of my role here in the highlands um i have two sessions for research and one session for clinical long covet and we are covering a huge geographical area so the only way we can do that um is to work in close collaboration with our gp colleagues so as partner for the long covet service we would be planning education and outreach with the gps and with other clinicians allied health professionals physiotherapists occupational therapists so forth so my job is to keep on top of all this research and to transmit it into clinical practice both in my own clinical practice but also helping to disseminate that to my colleagues i hope that that works but i only started yesterday so i'll tell you in a few months that that seems fair that seems fair um professor and i think the on if we hear what what the dr scott said then how that that information is now being deployed how are we ensuring that that good clinical practice or that good practice is being reflected across the whole of the nhs boards because you know that for sure that what we're hearing is is it's patchy and there is a bit of a postcode lottery in terms of whether you can access any kind of treatment for for long covet let alone diagnosis so how are we ensuring that that that is being deployed across the whole of the country yeah so just coming back to data for a minute um outside of my activity within chief scientist office which is all dedicated to research development in innovation i also engaged in pandemic preparedness group that looks at precisely what you said data to be ready to deploy across the system in case there is another emergency but of course it has to be deployed every day in a normal practice to be useful so we're looking at it as my colleagues said there are safe heavens both regional and central scottish um safe heaven through the public health Scotland and there is enormous effort from all colleagues across scottish government nhs and everywhere else to make data useful for research innovation but also for everyday practice this is absolutely crucial and the issue as we heard and as was recorded in previous sessions is how long it takes from asking for a certain set of data to actually being able to use it an ambition would be we're not there yet to do it in two or three weeks yes i can just finally finish off i was interested here you say professor anna around if you've got access to 5.1 million scots and that's that there's you know obviously a significant pool of data that you can pull but for that to be useful in people would have to one suspect they had long covered or know they had long covered they'd have to then access a gp to to be diagnosed or at least a gp to to signpost them somewhere that can be diagnosed for long covered and then they'd have to be able to identify a treatment so i'm really interested in how when you talk about 5.1 million people the research we've done and the evidence that we've taken suggests especially in the more deprived areas that people coming forward knowing that they potentially have long covered is a problem so my colleague on far right did it so he'll tell you better but i looked at the paper that was published in fact it's available to look at today and this eave to paper used more than a diagnosis it used the words in gp computer to evaluate whether this might be long covered so there was there was more than a diagnosis made there were other ways to look at this 5.1 million people i would like my colleague who is an expert to describe this i think this is a huge achievement so yes there is always a problem that if a patient didn't have any contact with health service none never came never complained then there are no data to look at but majority of people with that plethora of symptoms that we see with long covered would have have some contact with GP at least described series of symptoms that would allow to identify this might be long covered i think we need to hear from expert yes so the 5.1 million is just really the adult population in scotland and the study that we looked at looked in detail at the health records of about half a million people who tested positive the same to as jill scott study and then matched up records of these people who went who had at least had covered at some time in the period with people who had tested but didn't have covered at the time and then you're comparing their contacts with the gps in in the periods 4 to 12 weeks or 12 to 26 weeks after their their covid and that identified symptoms that were not necessarily recorded in the GP coding as long covered because that there is a code that the gps can use but they don't use it very often but what you do find is that other people are being treated or reporting symptoms of fatigue they're also reporting mental health issues and there were a number of other symptoms that were much more common amongst those people who we know had tested positive for covid compared to people who we know had tested but didn't have it so that gives you an idea of the symptom all the symptoms that people are reporting and it's also gps are recording a they're asking the people to go for further tests like blood tests, echocardiographs or something else so it's my lack of medical knowledge and also prescriptions so things like for antibiotic prescriptions and stuff like that so with these with these groupings of of of conditions we were able to postulate that perhaps long covid a person with long covid has had a test and has two or three of these types of interactions with the GP and that's where we had our estimate of what the prevalence of long covid might be but we recognize that this is going to be an underestimate because there are going to be people who have got coronavirus but they've actually never bothered to go to their GP and this might be what you were referring to as lack of engagement in particular communities where if someone doesn't think the GP is going to treat them there's no much point going to see the doctor there so but one of the things that we're going to expand on is having got this working definition we're now going to look to see whether we can identify what might predict whether somebody's got this condition and then use it to try and see in the future because testing for covid has now really diminished and to look to see with people who are presenting for these types of symptoms will have these symptoms commensurate with having long covid. Thank you, convener. Thanks very much. I think probably I was going to follow on some of the line of questioning that Brian Whittle was going for. So, I mean, we heard different evidence from down south as well but so is the one of the problems that the GPs, some of the GPs are, are not familiar with the codes or there are and that's why you're going through this free text. Can you just explain to us what free text actually is because I'm not a medic or a scientist or anything? No, when you have a clinical consultation there are within the GP systems of the facility for them to go through their computer and pick a code for what you're consulting with so if you go there with a severe headache then the GP will click on the code this person's consulting about a severe headache so we get a little read code in Scotland and that's the great stuff for us to use as researchers but alongside that the GP will type in notes that say severe headache and then you know something like you know maybe reports falling down two weeks ago or whatever and then you might do query concussion and stuff like that so the free text is everything else that the doctor writes in their notes at that time. So what we've found is that amongst people who had got to the long COVID code was not used very often but quite often in the free text the doctor would write query long COVID or COVID positive a while ago so we're using that and other and that with particularly in the fit for work notes that are also free text there so that gives you an idea. I mean I have to say I was I found your report paper very interesting some of it I didn't understand I confess but it was good I mean can I press you how so what is the prevalence of long COVID I mean I saw 1.8% that gets mentioned in your paper which would be maybe 90,000 people. Yeah that's what we had estimated it as at that particular time but other other surveys will have looked at things differently and I think Jill Scott's one has about three to five percent their areas are there because they're doing things in a slightly different different way. Right I'll come to Dr Scott next. That was our way and we think that as I explained it's likely to be an underestimate because if and if someone doesn't go to the GP they're not going to feature in our estimate of the prevalence. So they kind of commonly used figures about 170,000 I think is that is that a figure you feel would be reasonable figure if you're underestimating? Well I know I'm underestimating I don't know how much. You don't know how much. I mean it just was a statistician who are incredibly cautious about the biases that might exist in our in our data. No that's fair that's what I want to hear I'm just yeah I will come to Dr Scott just final one though for yourself. I was interested that more of the long COVID seems to have come from Alpha and Delta unless from Omicron is that what you found? That's what we found yes but again there's another potential bias but although we think we corrected for this is that Omicron is around just now and but Omicron is also around at a time when people are heavily vaccinated and I know that the Jill study looked at the impact of vaccination on whether or not individuals develop long COVID as well. Okay well I think Dr Scott's going to come in and I have a question for you Dr Scott anyway so go ahead and what we've asked already. So I'm a co-investigator on it's Professor Jill Pells leading the study the long COVID study and I'm one of the co-investigators. We've got one paper that's already been published looking at some of the natural history of long COVID and yes we've got one about to come out on true prevalence so again the way that the long COVID in Scotland study worked is it sent out text prompts to everybody who tested positive and got back feedback from patients with I think in our next study it's about just over 41,000 positive cases and with a control group of 35,000 who were tested but found to be negative so this isn't published data yet but our true prevalence estimates are looking at somewhere between 6 and 10 percent of people who tested positive for COVID that's not a population estimate that's a proportion of people who test positive. The ons data which again they've done things in a very different way they have a estimate of about 2.2 to 3 percent of the population. It doesn't matter which way you cut it we're talking a lot of people. A 3 percent of the population 1.6 there are a lot of people out there with a large range of disease. Okay thank you now you were quite keen on long COVID clinics and we've had I think we've been fair to say mixed evidence about long COVID clinics for example that they're extremely costly per patient and that people with other conditions might be diverted away from GPs to the long COVID clinics and so things would be missed. I mean I just wonder is it not the GPs in all of this that are key because I think even in England the GPs refer people to the long COVID clinics so the GPs are the key people? Yes I think GPs are pretty key in our healthcare system across the board really not just in long COVID. The English clinics as I understand take referrals from general practice. The Welsh are accepting direct referrals but I think probably if you had a long COVID clinic it would be on referral from GPs. For the post Ebola syndrome we took referrals from the Ebola treatment units and directly from individuals but that's because there was such stigma associated with Ebola that they were not able to even go into their local healthcare providers at all. I think it's a testable hypothesis does a secondary care doctor add value to a patient outcome? That's exactly the sort of thing that health systems research could look at that the local motion study could look at. I've only had one multidisciplinary team meeting with the long COVID team here in Inverness but in that one meeting the team has highlighted four individuals with complex disease three of which I think would need a secondary care outpatient appointment and one will probably need admitted. It's not clear if all of what they have is long COVID or something else you have to rewind and be a bit of a general physician and I think that's where secondary care can come in. There's a range of disease which is long quote a range of symptoms and some of it can be self-managed some of it could be managed in primary care and some of it I think will need a face-to-face secondary care clinic. Would you have to be a bit pragmatic about it I think? The point about face-to-face meeting with people is that something that varies around the different health boards within Scotland that someone would be doing more face-to-face than others or is that a national problem? I don't know of anybody who is funded to do a face-to-face long COVID clinic and there's one private GP who's given evidence to this inquiry who's got a very good reputation. I know of a few other colleagues who are seeing people on a bit of an ad-hoc basis in other clinics but other than that I think I don't think there's anything on the scale of the English long COVID clinics. I mean I would say in Highlands we've got other issues as well that could also do with rehab we have Lyme disease quite a lot of Lyme disease up here as well. I don't wouldn't want to miss those patients out of any service you know we just have to be a bit equitable about what we're offering and try to target it at people with whom we can make a difference to their care. That's an interesting one to bring in as a hill walker I always am a bit wary of Lyme disease. Could I move to Professor Duncan and Professor Cooper? On the question of GPs I think your paper also suggested maybe you know GPs are reacting differently to long COVID some of them are maybe wary of diagnosing is that the case? Yeah so we have and again we should say our findings are initial findings and haven't been peer reviewed and published yet. Yeah I was going to ask you what your timescale for that would be. Yeah so we're currently analysing that data and in the process of right putting papers together so they should be out in the public domain soon but we have in the course of our research over the past almost couple of years we've interviewed people with long COVID who have varied experiences of accessing some very positive experiences of accessing GPs who are very helpful, did lots of tests, sometimes the difficulty there in some of the health boards was not knowing where the person should then be referred to because of sometimes the time or the knowledge around services that were available for the patients like rehabilitation services and some examples where it's not been so helpful. So a bit of a kind of mixed picture I think would be fair to say. We also have interviewed some GPs and that's the data I'm not so familiar with do you want to answer that piece Eddie? So to answer your question there's been a mix of responses so some GPs have been very very supportive of patients who so looking at the patient data and the GP data and bringing these two stories together and matching it up our data suggests that some GPs are very responsive and very willing to send people for tests and follow people up. Some GPs suggested that they view the condition of something that will resolve naturally over time and does not need intervention and some GPs and some patient data report that their GPs don't believe in inverted commas in long COVID. So there's a mix. Now I can't give proportions to those and I'm not suggesting by any manner means that all GPs are like that but you do see that breadth of perspective in the data that we've got. I think the other thing to say which speaks to our data as well as the what's not wanting to say whether or not not able to say whether or not specialist versus non-specialist clinics are right or wrong our evaluation method is a bit more nuanced than that uses a methodology called realist evaluation which asks the question what works for who and what situations and when because obviously the people of Scotland live in dramatically different situations as people in the highlands and islands communities and there are people in big urban cities and the availability or the opportunity to develop services varies dramatically across these systems. In our four case studies that we're looking at which looks at varying different health boards and different types of settings in the two health boards which at different times had had from a rehabilitation perspective not with medical expert improved but from a rehab perspective the closest you could come to call along COVID specialist clinic what's clearly been useful is the promotion of accessible pathways to access those care so actively publicising both to GPs and to patients how to access these services and where that happens you see a massive influx of people coming for care where that doesn't happen where that's not available there the numbers of people that come through into secondary services into the rehabilitation professionals who are delivering integrated on COVID rehab those numbers are very very small and it's quite stark. Okay I think I'm going to have to stop it there I've used my time but thanks very much for that we could explore it further thanks convener. How much can I bring in Jim Fairlie please? Thank you very much convener. I'm going to kind of try and mop up with you here but I'm going to come back to yourselves first about the reaction from GPs it sounds very similar to the reaction from GPs to women who go in for menopause some doctors if you'll get over it has just changed your life others say let's take this seriously and go through a whole process who monitors the GPs reaction to a patient going in to say I have a problem and is there any recourse for a patient who says my doctor just isn't taking this seriously? I don't think from we're not primary care specialists I'm afraid I don't feel but we would be in an evidence based position to answer that question. Okay so I just thought that came in my head while you were giving that. Do you feel that there's enough connectedness to all the research that's going on that feeds back into the system for practitioners to actually use? So everything that you guys are all doing is that getting to the guys that are actually seeing people in a waiting room? I think our system for all diseases and particularly here is very well designed to inform of course every research project aims and this is very very clear to researchers to publish to publish peer review paper which then feeds into the guidelines and as you know this particular condition has unusual guidelines where sign guidelines, Scottish guidelines combined with NICE and the Royal College of General Practitioners. I think this is the only to my knowledge the only such situation where actively all research is monitored to input to these guidelines as quickly as possible. So there was the recent addition I think in 21 and probably something will happen soon again with newer guidelines. In addition all researchers those funded by CSO and everybody else participates in national and international meetings and symposia and these nine projects funded by CSO came together to present preliminary data at the symposium some months ago so there is a huge effort to make data everything that comes out of this research available. Final reports will be published of course when ready published in a language that will be accessible the effort is made and in addition there is UK wide system of reporting all research results through so-called fish system so this is all reported for posterity and available for searching looking at etc. Okay thank you. Professor Robertson can I come with you for a wee second did you say that the data that you were looking at did you try to disseminate whether or not people were more likely at long Covid if they had been vaccinated as opposed to if they had hadn't been vaccinated? We have not looked at that in detail as a table in there which suggests that long Covid was more common amongst unvaccinated people who were unvaccinated at the time they got coronavirus. Is there a correlation between the fact that they were unvaccinated or was it the strain of the virus that they caught? Are you able to disseminate that? At the present time I won't say yes or no. The two things are confounded in the way that the unvaccinated largely got coronavirus when the wild type and alpha was around. The vaccinated who got coronavirus were largely in the delta and omicron period. Okay so Janet Scott my apologies I forgot your name for a second there. How do you feel we're doing in the country right now and I'm going to come back to the point of view if I'm a patient with long Covid and I'm going to my GP. How do you feel we're doing right now as a country and actually getting those people in the right pathway? I think it's pretty dreadful. How do we sort it? Okay um maybe we should have started with that question right at the beginning. Yeah I think my colleagues there in health systems research hit the nail on the head. We have to have clear and well publicised pathways. Now however we choose to do that if that's through primary care or with a combination of primary and secondary care there has to be a clear way. At the moment some of the services we don't have a lot of funding for a large geographical area here in Highland so there is some reticence to really go out and publicise things because we already have quite a backlog of people to see and we are aware of the huge unmet need out there and we know that if we be properly publicised things that there will be a deluge that we are not equipped to cope with. So I think the better so we've got people sitting at home needing care and we we don't have the pathways there to deal with it so we need to make sure that those pathways actually exist that if a patient needs self-care that they can access those facilities if they need to face to face physiotherapy or OT that they can access those facilities if they need a secondary care advocate or a general physician that yes you can actually access that and then we need to publicise it so we don't want to publicise what doesn't exist and at the moment that those you know we don't have a clinic to see those patients that need them we don't have a face to face physio to give those patients who need it now whether or not I think the need is there you know we're hearing that from patients all the time and it's not that every patient with long Covid needs all of that service any more than every patient with COPD needs to come into hospital you know three times a year but some patients with COPD do need that and some patients with long Covid do need secondary care and you need somebody to advocate to make sure that they get seen by a POTS expert or seen by an endocrine expert or assessed in terms of of mast cell activation or whatever it is we're going to do and so that we can optimise everybody's health so we I don't think we have the structures in place clinically and those structures we have we are being loath to advertise and this is about this this session is about research I also want to add that I do think that that is hampering our participation in national and international research okay thank you very much I'm going to I'm going to ask you one very quick question um did your research find anything single point of contact and if that was desirable Edward oh sorry sorry I wasn't sure who you um we didn't we didn't specifically study single point of contact research that single point of contact that's a intervention which comes out our service which has come out since our study has started and as part of the long Covid funding so it's not something specific to our study okay thank you thank you convener thank you very much um if I just may ask a few quick questions I know we've just run it um we're just a bit over time but could I ask about the international and um I know what was just mentioned regarding how how is the international research in long Covid being disseminated in Scotland I don't know Dr Scott did you want to come in here I don't know that you just mentioned that well as with all research it's you know it's available through the preprints it's available through the published press but you do have to have time to sift through all of that and keep active and you know each particular gp has a big workload and long Covid isn't necessarily their main focus of attention so that's where it's useful to have specialists in a particular area to get to know patients properly clinically get to be an expert in this area and then it's your job to keep up with the literature and to keep up with the regular research international or local I mean I also see hiv patients I don't expect every gp to keep up with all the hiv literature but as an infectious disease physician that's part of my job and I'm not sure that it should be it has to be part of every gp's job to keep up with all of the long Covid literature it's it's part of you know more specialist people to keep up with that sift through it and provide appropriate guidance out to primary care thank you thank you and um you and dickie if I could just come to you regarding because this is specifically about funding and research moving forward what level of research funding for long Covid is needed in the short to medium term in your personal opinion thank you I don't think we'll be able to give a figure for that as we said earlier in our response I think we're at the next stage of doing research around low Covid and as we've mentioned earlier we've opened our committees and the committees across our colleagues across the UK have opened their committees for proposals to come forward from the expert community to propose what they want to do in future research so they have access to the funds that are available across all a whole range of conditions and once those proposals comes forward they'll be put forward in front of scientific committees in order to give her the expert advice as to what we should be funding going forward and what would be of most value for us that's great thank you very much if I can ask and I'm gonna open this up to any of the witnesses if they could perhaps just raise their hands and they'll let me know because it's difficult for me to see online any of the witnesses today aware of any additional or ongoing funding streams for long Covid research that could be utilised Dr Scott we've not mentioned the welcome trust and there are international funding I mean we all go for any money that's available I don't think any of us are very proud about that so there's national and international money and wherever it comes from is where we'll apply and get it so those those those fundings are not specific to long Covid but there are they're available to all diseases you just have to put the case and argue your point could I could I add to this chair I absolutely agree and I think as we said before we encourage uh clinician scientists public health researchers across scotland to go for any possible funding and we bring it bring information closer etc we haven't mentioned horizon yet which is a big big issue as you know our scientists currently could apply for horizon funding and it is covered by UKRI in the meantime we not we don't know what's going to happen long term but this is a perfect condition for large coordinated international consortia to do research and I hope horizon is going to happen this funding will come to Scotland and then there will be opportunity for colleagues across Scotland to apply for big international agreed funding streams that could answer some of the things we've been discussing today thank you very much if I could just stay with you Dame Anna just one last question what oversight has there been on how research funding across the UK has been allocated so we work closely with colleagues across four nations there are a number of ways we discuss what we do but you know there are oversight groups such as oscar where funders of clinical and public health research come together we discuss things bilaterally with UKRI medical research council major charities including welcome but as we said before all these bodies including national institute for health and care research all these bodies like the CSO do have their own expert committees and there would be normally an open call the proposals come depending on the size of the given call and proposals there could be two stages an early stage and then full proposals so expression of interest full proposal and this will always be independently assessed by experts in the area so as the colleague online said it is important to have experts in long covet to be able to assess these proposals but we believe and there is enormous evidence that open calls produce the best possible research and the expert assessment is what we need there is something called Haldane principle that we shouldn't dictate to scientists what to research there should always be peer review of experts because that produces much better research for our patients thank you very much dame and that that's very helpful can i thank all the witnesses for giving their evidence and giving us all your time this morning if any witness would like to raise any further evidence with the committee they can do so in writing and the clerks will be happy to liaise with you on how to do that the committee's next meeting will be the 16th of march when we will conclude our long covet inquiry with the cabinet secretary for health and social care that concludes the public part of our meeting this morning and i suspend the meeting to allow the witnesses to leave and for the meeting to move into private thank you very much everybody