 Fylltyno. Fylltyno gyda'r ddiwrnod mewn feithio lŵr Covid-19 ym Maintain dimensional criminal ym 2023. Fylltyno yma dim gofyn yn sgwyrdau sy'n gyflymion i Losh Cymru. Fylltyno gyda'r ddiwrnod i Llash Cymru, Rob Gawens, y Dynodau Llyfridol a Llanfodol i'r Manigiae hwy ar desgol yr Y Llyfriddol Cysri ac i Llyfriddol Cymru, i Llanfodol Llyfriddol Cysri ac mwy o'r dweud ym Llong Covid tspor. Nick Farlane, chief executive and founder of Long Covid Kids, who is joining us online. Jane Omorid, chair of Long Covid Scotland, and Stuart McIver, Long Covid Scotland, and also Michelle Powell-Gonzales, who is also joining us online. We have had apologies this morning from Donna Covery from Long Covid Support Group Scotland. Thank you very much for giving us your time this morning and also for all your written submissions. We estimate that this session will run up to about 11 o'clock and each member should have about 10 minutes each to speak to the panel and to ask their questions. For those witnesses who are attending remotely this morning, if you'd like to respond to any issue being discussed, please just type R in the chat and we'll try and bring you in. I'm keen to ensure that everyone gets an opportunity to speak this morning, so I apologise in advance. Therefore, if time runs on a little bit too much, I may have to interrupt members or witnesses just in the interest of brevity. To start, I'm just going to invite witnesses just to briefly introduce themselves and I'll think I'll go online first. Sammy, would you like to introduce yourself first? Thank you. Good morning. My name is Sammy McFarland. I'm the CEO and founder of Long Covid Kids. We have a Scottish branch as well. Helen was unable to be here today, so I'm filling in for her. I, myself and my daughter, both got Covid in March 2020 and remain with Long Covid. Thank you, Sammy. Michelle, would you like to come in? I'm sure. Hi everybody. My name is Michelle Powell-Gonzalez and I'm the founder of Long Covid Scotland support group, an online support group that I started in, I don't know, October of 2020, got Covid in April of 2020 and never recovered. Thank you. Thanks, Michelle. I'm going to just go around the room. Rob, would you like to introduce yourself? Hello. I'm Rob Gellans. I'm the policy and public affairs manager of the Health and Social Care Alliance. We've done a bit of policy and lived experience engagement work on Long Covid, which I hope I can tell you a bit about this morning. Thank you. Ian. Good morning. My name is Ian Mullen. I've been a member of Covid Action Scotland for approximately two and a half years. I'm also a trade union representative with the City of Edinburgh Council. I have done a number of presentations to various campaign groups. Thank you. Thank you. Jane. Hello. I'm Jane Omrodd. I'm chair of Long Covid Scotland, which is an advocacy and action group for people with Long Covid. It's been established since 2020. I have long Covid. I've had Covid twice and, unfortunately, I'm still suffering the after-effects of that. Thank you. Thank you, Jane. Stuart. Hi. My name is Stuart McIver. I'm also from Long Covid Scotland. I'm also a trustee and member of the steering group. I also unfortunately have Long Covid. Thank you, Stuart. I'll now turn to questions. If I may begin, please. I'm going to cover the theme of public awareness of Long Covid. I know that the Scottish Government has committed to delivering a targeted Long Covid marketing campaign in conjunction with community pharmacies, but a lot of the submissions that we've received so far in this inquiry have highlighted a low level of awareness in Long Covid. What more could or should be done to raise public awareness and recognition of Long Covid? I think that education is key to that, both by occupation and public health messaging. Mandatory, CIPD, training for health professionals and public sector, HR units and where it's possible in private business. On-going health messaging is key to that as well. Public information is stuff, so your TV, radio ads and things like that can reach out across the community and make people aware of the risks of catching it. There's very limited recognition as to the effects of what Long Covid has on people. The risk to their health in terms of not taking any precautions with multiple infections as well. That's been fed into some of our groups where people have caught Long Covid and not been aware of it as an illness or the extent to which they put themselves at risk, and now it's too late, unfortunately. Does anybody else want to comment on what the Scottish Government could be doing to raise further awareness? I fully support what my colleagues just said. I do think that more has to be done by employers. I don't think that there is an understanding within workplaces, especially things like reasonable adjustments, the long terms of health surveillance plans that are required to be put in place. There just is not, from my experience, there is not any really good examples of that that I've come across. I would like to see a lot of the employers, especially this Government, leading by example by signing up to the Covid safety pledge, the indie sage Covid safety pledge. There are a number of supporters of that in big companies, in the voluntary sector, while in branches recently signed up to it. It just makes people aware, employees, service users and third parties aware that we do take Covid seriously and that it has not gone away. As much as the UK Government would like it just to be swept under the carpet, I feel that the Scottish Government, the Scottish Parliament, should lead by example. Oh, thank you. Thanks, Ian. Rob, did you want to come in for this? Yeah, no, I'd also sort of echo those points. I think it's incredibly important that there is more done to raise public awareness. It's very disappointing that people living with long Covid are still describing not being believed. So there's potentially a lot more scope for awareness amongst healthcare professionals, amongst employers, amongst state entitlement agencies, the DWP, Social Security Scotland, local authorities around things like social security payments and self-directed sport and social care, and also wider society as well, because long Covid is outwardly invisible. The impacts of people being told that they don't believe you or there's nothing wrong with you are ever-stating. I think we've heard issues about how, particularly with healthcare professionals from employers, that there's really negative effects of that. I think there's this kind of targeted and wider public awareness raising. Thank you, Rob. I know Michelle. Would you like to come in? Yes, please. I'd like to make a point that the Scottish Government and the UK Government in general both have actually made very little effort to raise any awareness at all of the effects of long Covid and the dangers of long Covid throughout the pandemic and now, which is essentially still the pandemic. Now we are living through a time where mitigation measures have been completely scrapped, and that's completely atrocious, because lots of people with long Covid feel further alienated from society. Really simple things such as wearing masks indoors in public spaces that are absolutely heating with people can be easily implemented, as well as better air filtration systems in schools to protect our community members. We feel completely let down by the Government. It's almost as if Covid doesn't exist anymore. We don't hear anything about Covid at all, let alone long Covid. The doctors don't really even know anything about Covid either. GPs are constantly, when I talk to them, telling me, I'm the long Covid expert, which leaves me feeling quite unnerved. Many of the members in my group feel exactly the same way. Many doctors actually say that long Covid doesn't even exist, so there needs to be a lot more with briefing and educating and pathways created within the NHS for us to be able to get actual proper testing and treatments and stuff. Thanks Michelle, that's helpful. Jane, I was going to ask you, do you consider that enough has been done to encourage people with long Covid to seek help? No, I don't. I think that many of them don't need encouragement. They need a system in which they can openly speak about what's going on for them. In terms of the access to healthcare professionals, GPs particularly, it's very mixed. It's not consistent. Many people are discouraged by that. I think that people are getting lost in the system, falling off the edge down the cracks or whatever you say, because people like myself, for instance, have had long Covid for three years now. To be acknowledged as somebody with a more chronic disease and get effective treatment and care for that is very challenging. I don't need encouragement. I need somebody to offer me a consistent approach to managing what has become a chronic illness. I think that we all need that a clear pathway. Can I bring in Semi, please? Thank you. We desperately need an awareness campaign for the general public to ensure families can identify long Covid in their children and seek support and clear guidance on the pathway of what that support looks like. Further, we need education for clinicians and allied health professionals so that they can identify long Covid and the associated conditions to apply treatment protocols. There are many conditions that sit under the umbrella of long Covid that can be treated, which currently are not being treated. I think that that is an area that could be expedited to improve the quality of life. It would be nice to find and see a way where policy makers have a full and comprehensive understanding of the obstacles and challenges that families face. They build policy around lived experience and have a lived experience input in the design from the very beginning rather than, as an afterthought, being invited to comment on something that has already been created. I think that that would be helpful. Really important is prevention. We need to turn off the tap of long Covid. We have been campaigning for clean air since 2020 for better health and learning outcomes. It is not just for reducing Covid, it is for improving health outcomes across the board. It is well documented that the benefits of clean air will help in many scenarios—obviously asthma, but lots of other conditions as well. Specifically, our interests are in educational settings right the way through to higher education. I would like to pursue a similar line of questioning, but I want to look at specifically the question of training on long Covid. I think that Stewart mentioned that a few moments ago, because what we have picked up already anecdotally as a committee is that a lot of medical professionals simply do not have an understanding of long Covid. A lot of GPs who, as you can imagine, are very busy dealing with many other things. When people present with long Covid, they do not actually understand the condition. The obvious question is what specific training would be helpful and are you aware of any examples of good practice that already exists around training for medical professionals—not just medical professionals but employers in the public sector and elsewhere? I think that there is a range of resources out there. You do not have to look very far. For instance, accredited professional resources, Royal College of GPs, sign guidelines—we have a plethora of information—is how that gets to professionals. I think that it is well known that healthcare professionals only tend to listen to other healthcare professionals. Listening to lived experience in terms of education goes a bit further down the list. However, I do think that it is vital that lived experience is incorporated into the whole process. I think that it is back to what Sammy was saying. I noticed in some of the evidence that there is the suggestion that there is an education strategy around long Covid. That is news to me. It has to be said. I am not aware of that being a case. I do not think that any of our members would be aware of that and what that means for them, or indeed have they been asked to be involved in that. If there is going to be an approach to educating healthcare professionals and to the wider public healthcare professionals predominantly, then people with long Covid need to be involved in the development of that resource, not just as an afterthought. Well, come along and have a—we talk about your experience, but from the very beginning around developing the resource and delivering it. I know that that might be hard pill to swallow for some healthcare professionals, but I think that that is an important part of what should be happening and it is not at the moment. Plenty of online resources, but there are also plenty of people with lived experience who would be happy to be involved in further development in work to educate GPs. At the moment, we are about to embark on a small piece of work around that. Whilst there are things to learn from online resources and possibly how it is being done in other places—England predominantly—I do not think that there is any better position than we are from that respect. Michelle, you want to come in and then Ian. I just wanted to add from what I am seeing in my group that a lot of people are going private. We have—there is one doctor, particularly Claire Taylor in Dundee who has long COVID as well. She is actually helping people with long COVID because she has an understanding of the mechanisms of long COVID and the particular issues that we are going through. I think she would be an amazing asset to help train, to help educate other healthcare professionals. I also want to to say that I really do feel like we need long COVID clinics that use a joined-up approach because at the moment we are seeing loads of specialists that look at things through a very tiny perspective. They do not talk to each other and we are not getting any answers. I have gone and had x-rays, ultrasounds and all kinds of different tests that show absolutely nothing, but we know that something is going on. The tests that I am being sent to at the moment are not really doing anything because the doctors do not know what to do and they just send you to these routine things. In my mind, that is a huge waste of money because there are tests that could be done that target long COVID. If they were trained properly, they could actually look into that. I think that patient-informed long COVID clinics with joined-up resources and specialities, that is a multi-system illness that affects the whole body. It would be amazing. I fully agree that long COVID clinics are absolutely critical. As soon as they are introduced, they are better because we have an inconsistent approach at the moment where we were having a discussion before we came up this morning that you could ask two different GPs or medical practitioners for their interpretation of long COVID symptoms and they will come up with different answers. One of the colleagues was mentioned earlier about the good quality air. I have been campaigning for almost two and a half years now for the introduction of HEPA filtration units into public buildings and into workplaces and looking at the long-term benefits to health through having HEPA introduced into work, especially if you look at schools, the amount of children now that have bronchitis as my other respiratory issues. If you could catch that at an early age through the school system, there is a long-term health benefit in later years. There is also an opportunity for older folk that have respiratory issues. I have seen the guidance that has come from the Scottish Parliament on HEPA units and I am far—I am not impressed at all. Again, we were talking about this before we came up. During my campaign that is still on-going to get HEPA units in workplaces, managers have consistently copied and pasted the Scottish Government guidance. They cannot actually be bothered writing to me given their personal opinion of HEPA, but what they do is copy and paste what the Scottish Government says. That is that HEPA units are not effective, they are effective, they have been used in conical areas for at least the last 20 years. My own union set up, my own branch set up to teams meetings with a HEPA manufacturer last year, who was actually an adviser to Sir Patrick Vallance. We invited managers, we invited other trade unions, anybody or other campaign groups. We had no more than 12 people turning up to these two meetings. I firmly believe that the Scottish Government is responsible for the lack of interest that is being shown in producing good quality air. In relation, one of the excuses was what happens if it is introduced in a school, or a child goes and touches it, or who is going to change the filter. There seems to be this perception that HEPA units are all small mobile units, they are not. They can actually be wall mounted, they can be fitted into air conditioning units. I would like to see all our public buildings that are new, you could fit these retrospectively into air conditioning units and actually produce the better quality air that would benefit a longer health benefit to workers and service users. Can I bring in Rob on this issue and go back to my original question? Are you aware of any examples of good practice when it comes to training? Maybe also get your thoughts, because a lot of other people have mentioned them. Along Covid clinics, do you have a view on whether these would be an advantage? In terms of the good practice, there are no examples of good practice, but it tends to be inconsistent, it tends to be individual employers, individual healthcare professionals. The other witnesses have said that there are a lot of resources out there, including from people with lived experience, along Covid kits, for example, there are excellent resources. I think that getting that into the hands of healthcare professionals and raising awareness generally. In terms of clinics, the people living with long Covid that we have spoken to have been supportive of them do not know whether they would necessarily be the magic bullet as such, but it would be an opportunity to bring together that sort of specialism and allow earlier diagnosis, which has been a particular issue as people are waiting a long length of time without being passed around, without the specialism or particular knowledge of long Covid. The theme that I want to look at is stigma. I noticed that there is a recent study in our papers referred to, which says that 95 per cent of people reported experience in stigma related to their condition. Have you experienced or have you been told about discrimination as a result of long Covid? I will start with Samy online. Stigma is a huge issue, as is bullying now for children who are living with long Covid. That comes back to the lack of awareness and training in educational settings. That is really an area in which we need to focus. If children and young people had a better awareness, if educators had a better awareness, that would be reduced. It feeds in from the negative media coverage, the minimising language that is used around long Covid. It is making the obstacles and challenges for families, for children and young people 10 times harder. Stigma is a big issue. Could I be asked if stigma is an issue and the evidence would suggest that it is? What can be done? We haven't really learnt anything from ME. Unfortunately, long Covid sufferers are becoming aware of what the prevailing wind in terms of attitude is for that. Education is central again to that. I have witnessed some horrific abuse of long Covid sufferers online, where people have been attacked for having long Covid. For some reason, long Covid seems fair game where cancer and other illnesses aren't, but they are devastating in their own way. There is also an issue that Jane had intimated about people falling out of the system due to stigma. There has been some progress made in terms of having self-management of treatment, but people are falling out of that. There is a stigma in terms of, if you have long Covid and you are getting nowhere, you are not going anywhere. There is a resistance to individuals getting treatment from some GPs, so they are becoming stigmatised by that experience in falling out of the health system because they are not getting anywhere, so they are just disappearing. That affects the metrics of what is happening as well. It is also very gendered. Women are tended to be dismissed. That is an ongoing issue with a lot of chronic illnesses. Men are underrepresented as well, speak to my own bias there. Anxiety is regularly cited as an issue. Education and awareness ties into all of chronic illness, but I have not done to tackle that at a societal level in Scotland or by employers, and more could be mandated in the public sector. Long Covid is not going away, so we have to be dealing with this now. We will not be saving up the sort of problems in the future. Rob, on that question, the ME, because there are a lot of similarities in terms of you looking at it, so have we learned stigma? ME sufferers have talked for years about being dismissed, being lazy being dismissed. Have we learned anything for ME that we can bring to the table here? As you say, it is very similar in terms of people who have described their experiences. As I said, it is disappointing and concerning that the level of stigma and discrimination still continues. They probably have not learned enough. One of the things that I want to say about is that both use it from ME, but also long Covid to inform treatment of ME. People living with ME have had a long battle with similar things to be believed and recognised and that they have a long-term condition and that there is something for them. I think that there is stuff that can be learned from each other, but probably in terms of how it has progressed, we have not learned enough as a society and, Jane, on the response of professional services, have we seen a stigma around there? I think that I echo what everybody has said so far and certainly. There is no doubt that it influences the way that people with long Covid are viewed and treated and can access services. For me, if there is an opportunity in this and there has been an opportunity for a long time with ME, it is to realise that, if things are not addressed, it is just compound in the longer term public health issues and consequent burden on the health service in society. Now must be a time to say, stop and let's realise that and do something about it rather than keep going ground the whole day. I think that we have a risk of doing with long Covid just as we have done with ME. What about the workplace, Ian? What about employers that stigma there as well? I will add to what Jane just said. It is bad enough when individuals do catch long Covid. I have a family member who caught long Covid in a school, one in 14 cases in a week. The understanding that there is a stigma attached to that, but there is also a stigma attached to those who are being suppressed. I have colleagues in Covid Action Scotland that have barely been over the door in three years now. One of them has written a lot of articles about the open abuse that she has received over that period of time because she has been very vocal. She left her job so that there was not a conflict of interest, so that she could write articles about the guidance that has been sent out from the Scottish Government. In relation to the workforces in the game that we were talking about just before I came up, there are individuals who do not believe that Covid exists in preaching that to staff or making silly comments to service users about whether it is just a flu or a bad cold. That is completely unacceptable, and it should not be happening in any workplace. If you also look at the situation with the NHS at the moment, I was reading an article last week by a campaign group called Keep NHS Public. There is an estimated 10,000 NHS staff in the UK now off long-term with Covid-related symptoms. If you think of what 10,000 members' staff back working in the NHS could do right now under the circumstances that we have in the NHS, that would be a massive benefit to an already stretched workplace. In workplaces, we are having a major issue with recruitment and retention in a lot of areas. Just going back to the point about stigma with children, what we see is that there is still following that false early narrative that children did not get affected by Covid and therefore any symptoms that they have that are on-going could not possibly be long Covid because they would not have got Covid in the first place. That is still happening now, and that goes back to the earlier comments about the lack of public awareness that we have seen. Children are usually screened for health issues at school because children with long Covid are often not in school and they are missed for screening. When their parents and their caregivers try to take them to see healthcare professionals, they are told that this is anxiety or that it is not possible for your child to have long Covid because children do not get it. What happens is that those caregivers eventually stop trying to go back and get support because it is so crushing and demoralising and emotional. The detrimental emotional effect on the child and the caregiver outweighs any benefit from trying to seek help. I think that that is really alarming and something that needs consideration. I was meeting some local GPs recently in my constituency and they are working in some of the neediest areas in Glasgow, certainly, probably Scotland. I discussed this amongst other subjects with them and they made some comments, so I am interested to know how they would react to that. One thing that they were pretty sceptical about long Covid clinics in the first place, partly because of cost, is that they would divert money and people away from existing NHS services and the rest of the NHS GPs and the rest are under a lot of pressure. Effectively, they felt that it would put the rest of the NHS under even more pressure. The other point was that most of the people they have with long Covid have multiple other issues as well, which are long standing. To somehow divert people away on the long Covid bit would make it even less joined up because at least at the moment the GP can deal with all the issues, including long Covid. Another point that they made was that the main symptom that they get is respiratory issues around long Covid and that they are able to refer to respiratory expertise and that it seems to be working well. They feel that the present system is working reasonably well, so would someone like to comment? I am quite surprised at that. If you go into the comments on the website in terms of the views, that is not represented in the feedback back to people. From my own experience, I have gone to see my GP to see what services are and it has been stated what services have been made available in Lothian. My GP has told me that there is nothing. The pathways are not working and people are going to see their GPs. That is consistent feedback. The GP just looks at them and says that there is nothing available. I think that there is a need for clinics in terms of diagnostics. The illness is getting treated like pre-pandemic. If you had an illness, you would go and see the GP, but they are not carrying out the correct level of diagnostics. That is further borne out by people who have gone and paid for medical care and those interventions from my own experience are the only improvements that I have made in terms of long Covid because I have paid to see specialists who have offered me treatment. I think that what you are saying, John, speaks to health inequalities. You said that if somebody went to the GP, they were not getting referred or whatever. Are you saying that if somebody goes with serious respiratory problems, they are not being referred anywhere? I can quote my GP and say that we have said that there is no pathway. There is no pathway for respiratory problems? Well, there is a pathway for respiratory problems but the overall pathology of the illness is not getting addressed. That is part of the issue. But the symptom is? Yes, the symptom is. What is happening in terms of addressing those individual symptoms is that people are falling into just having little bits of their illness treated but nobody is actually looking at the total picture of their illness or the underlying pathology. For some people, if respiratory is the main thing, it is not just a little bit, is it? Well, if respiratory symptoms are the main part of long Covid, then absolutely that is great, but that is not the feedback from other people that have been affecting from this illness. I am sure that Jane and the rest of the panel will say as well that treating an illness in part is not treating the whole illness. The feedback that we have had is that people are not getting any treatment basically because there is nothing to refer. The health boards are starting to take action in things just now, but I have been very active in terms of asking what has been going on because I would quite like to get treated. I do not want to have to pay for private medical treatment to get. Individual treatment is being addressed and does not address the underlying issues with pathology and other issues not being addressed properly, which could be done quite. I think that the message that you were getting from GPs is not matched up with what people are saying, people with long Covid. I think that in terms of co-ordinating care, whether it is a one-stop shot, whether it is some sort of co-ordination of care around long Covid, that would surely be better use of resource than sending people here, there and everywhere to different specialties that, in the current climate, take a long time to get a referral even to respiratory, unless it is an emergency, could take quite a long time before you are seen and indeed for other specialties. The Government has told us that they have a strategic network which is joining it all up. I do not know if that is something that you are aware of. I am indeed. In terms of what the Government says is happening and the reality from people with lived experience, the two do not match up. I would agree within health boards that there are different things happening in different health boards and consistency is an issue. I would argue that. I know that everywhere is different, geography is different, but there needs to be some overall consistency in principles of what that might look like in each health board. I do not think that that message is getting through. I think that some health boards have nothing in place, some health boards have a little bit in place. It is very mixed across Scotland. You might say that we are further on than we were two years ago, but that does not match up. If that is the case, why is the experience for people with long Covid so abysmal still? That is the feedback that we are getting from our people. The two do not match up. Iain, I think that one is to come in. I am just very briefly, I fully agree with what Jeremy Stewart has said, but it is not just respiratory issues. There is also the effect that is on the internal organs. Even more an issue is the mental health aspect of long Covid and catching Covid in the first place. I think that we are heading towards, and I have said this for the best part of a year and a half, two years. We could possibly be heading towards a pandemic of mental health issues. That is not getting addressed. I am not aware of any advice or guidance that is being looked at seriously that involves long Covid sufferers and their mental health issues. Do you think that they need to get special, separate treatment from just everybody else who has got mental health issues? I think that there could be joined up working in that. I think that there are aspects of mental health that could be incorporated into a long Covid clinic that could be looked at as a complete illness. It has to be recognised that we have a problem that this country, through the health and safety executive, did not recognise Covid in the first instance as a virus of concern. There are so many people who have become ill and ultimately died through that. If we do not address our problem now—well, it is too late, we cannot address it—we have been through three years of this and it has never actually been addressed. However, in the long term, if we do not address the actual overall illness, taking respiratory, taking internal organs and taking the mental health side of it and the consideration, we are on a rocky road in the long term. Okay. Mr Gowns, did you want to say anything? I mentioned earlier that, as part of our engagement, the majority of people who live with long Covid supported the idea of clinics. I think that they had different views on what they would look like, but particularly some of the issues that were seen to address were, at the moment, a lack of holistic approach. Do you think that the argument that they might divert resources away from existing NHS services is a problem? Probably the key thing would be to get holistic support in place, whatever route that is. The other experiences that we are hearing is that there is people describing not being a defined pathway of care, not post-diagnosis care plans, nothing being joined up, things being slow, patchy and ineffective. I think that it is addressing stuff in a holistic way. Okay, thank you. Is that my time just about? No, I don't have a little bit of time, so I think that Michelle wants to come in. Right, and Jane Watson is back in. Okay, so here is Michelle next. I actually have a couple of things that I wanted to address that are from other things, but I wanted to mention that the vaccine campaign. People with long Covid are not considered to be on the list for getting the boosters. I wanted to get the booster before Christmas last year, and I am not old enough to get the booster, yet I have been severely affected by Covid for the past three years. I am disabled from Covid, and I cannot get the Covid booster. I think that people with long Covid should be offered the booster every single year, or however many times the doctors see fit, without any issues as a standard practice A. I would also like to address the fact that long Covid is not a respiratory illness. I run the biggest support group in Scotland for long Covid, and I can guarantee you that 99 per cent of the people in my group have at least three or four symptoms going at the same time, and they are ever changing all the time. There usually is a couple that are the base ones, but different things pop up. It can be GI. We are seeing a lot of blood issues, cardiovascular issues, add-on mental health, add-on all the other different things that are happening. We need a joined-up approach. We are desperate to get better. What is happening now with our GPs is not working the long Covid, what do you call it, brain fog, where you go to get diagnosed or whatever, these long Covid places at the sparse? Yes, assessment centres. Thank you. These places are not working. They are not helping us. I have all these people in my group that are going to these places, and they are not getting the help that they need. All we are asking is for you, the Scottish Government to please reassess, bring us in. We want to help and we want things to get better. We all want to work together here. Could we all want to get better? Please listen to us. I think that we are listening. Ms McFarland, you wanted to come as well, I think. Thank you. I just wanted to echo the point that Michelle just made, that long Covid is not a respiratory disease. There is emerging evidence that it is a vascular condition and that any system in the body can be affected. I have somewhat forgotten what I originally wanted to say just at the time, but I wanted to let you know that we have recently done a survey of the health care services that we are publishing in collaboration with the University of Derby. It is 72 per cent highlighted their experience of not met their expectations. We are currently working out the deeper analysis, the preliminary findings, so we will be able to provide some of the specifics for Scottish respondents, around 400 respondents in our survey. Thank you. Okay, that is great. If you have other points, I am sure that you can bring them in later on. Thank you. Thank you for giving us your time. I was going to look at long Covid services as they currently stand, and I was going to talk about your experience of accessing specialist care. Given the responses that we have had today, I think that we have a conclusion around it at the moment that we are still got some way to go. I suppose that there are a couple of things that I was going to put out on the table. That is are we collecting the data? Are we utilising the data? The second part of that question is we need to understand from those who have gone through this journey, what does specialist care and specialist assessment look like? What is it that we need to build? I was going to say that there are specialist clinics that are working in England. It is often referred to as clinics that do not work, but the tensions never draw into other models that do work, such as the Hertfordshire model, which has been cited many times by our colleague Dr Galcani. Also in London, there are the UCLH clinics, which have post Covid follow-up neurology and osmia services for children. I think that one of the themes is that ONS stats are often quoted and are used or derided in terms of being self-reported, but we are at this stage now, where we are three years into the pandemic, and we still do not really know what the scale of the issue is in terms of people that are having a long Covid is. It is often said that Scotland has great data sets, but we are not using them. In terms of the funding that has been allocated for long Covid services, I do not know what that is based on, but the needs are clearly going to grow as more people fall sick. If there are issues with GPs not actually coding, as we know, as we have heard from GPs and also in the group with the illness not being coded properly, how can you solve a problem when you do not know what the scale of the issue is? There is analytical work that has to be undertaken to address that, which could be undertaken. From the research point of view, when Sammy talked about research, there is a reasonable amount of good quality research out there in terms of what is long Covid suggested, approaches to assessment, some work around tentative treatments. In Scotland, nine projects were funded in 2020. We have not seen any further funding around research projects, predominantly from the Scottish point of view since then, and I think that we have a lot of opportunities to do further research. I would ask, well, what is the plan around that for the future? For us, certainly, we would want to see research linking up with national and international research as well. It is said that the time span between an initial idea for research to actually, when it produces something and then treatment or a guideline is written could be five to ten years, so things move pretty slowly. I think we have done well in the last short time to move things from some points of view in research quickly, but we need things to happen more quickly. We need more focus and we need people with long Covid to be involved more significantly in the whole process. That links into the data that you are asking about and that Stuart is talking about. It would give us better, clearer data around a whole range of things as well as some points around good practice and sharing good practice. I agree with what Jenny was saying. In each of our groups, there are people with huge amounts of experience in their own fields, both medical and scientists, and that needs to have a joined-up approach. Whether it is through the Government, we are in the sage. We are hearing absolutely nothing from the sage, the Government's sage group, but with collecting data, I think that there is a major issue. I do not think that since the guidance went out from the Governments that there was no need to report or record cases, there has been a fundamental flaw from the Scottish Government. The Scottish Government is responsible for not allowing workplaces in the public, private and voluntary sector to collate that necessary data, because we cannot rectify an issue unless we know that there is a problem. For instance, in one of the examples that I was going to give was in schools, I was receiving statistics in the first thing in the morning of how many infection rates were in each of the schools in Edinburgh. I was then getting them again at half past six at night or furniture, and that was giving me an understanding of where the spikes were. From the first of January this year to the 31st of March, we had 18,500 cases in Edinburgh schools in early years for Covid. That was both pupils and staff, and that had a massive impact on the education system. If you think of that in the other 32 or 31 local authorities, imagine how many schools were impacted directly. However, out of that information, there was nothing coming back about how many staff or how many pupils have now become long Covid sufferers. That is a major issue. It is the same with all the essential workers who have worked all the way through the pandemic. There is no data that has been available—certainly I have not seen any—that identifies how many essential workers have suffered through attending work or attending school. Michelle, would you like to come in? Oh, sorry. I wanted to point out that we, in the group and in my personal experience, we have noticed that for a year or two there was no diagnostic code for long Covid, and when there was one, the GPs did not know about it. Within my group, we were circulating actual screenshots of the different diagnostic codes, because I know that the NHS uses two different systems, and we were presenting them to our GPs to show them, hey, this is a diagnostic code for long Covid. Please, can you put that in to my records? I want that to be in my records to show that I have long Covid. A lot of times, GPs could not find them. Essentially, the burden was all put on us to try to get this information into our records so that the Government would have this information and be able to do something. It is quite absurd to have these circulating in the group and everything and for us to have more information than GPs. In relation to workplaces, and again, this falls back in the health and safety executive, if you look at Scottish local authorities on workplaces, I think you'd be amazed how many ridder reports have been submitted to the HSE in regards to long-term absences or over-7-day absences in relation to work-related Covid cases, because I have yet to come across one Scottish local authority that has actually submitted a ridder report. Again, that is through both the UK and Scottish Governments' guidance. That was part of the answers that I was getting. It was copied and pasted from questions that I was raising. There hasn't been one report in Edinburgh submitted in relation to Covid infections in relation to ridder reports to the HSE. I think that what I am hearing here is really that if we don't look, there won't be a problem in this conversation. I think that what I wanted to do is try to tie up what my colleague John was questioning on and what you said about the assessments and the ability to diagnose what you described, having gone private, was around looking at ECG, MRI, blood tests and, by a process of elimination, getting to a long Covid diagnosis. I suppose that the issue here would be that that is very, very intensive for the NHS staff to do. To my colleague John's point, that is a huge amount of resource to allocate and take away from, potentially, other areas of the NHS. How do we deal with that? I was just going to say that the diagnosis of long Covid is no different to the diagnosis of any other healthcare condition that might be complex. It is a diagnosis of exclusion. Every process that a GP or a doctor has to go through with a patient takes time. I think to put long Covid in a separate little box that it is so much more difficult and more complex than other complex diseases or, indeed, any disease that requires a diagnosis requires assessment. I think that it is not useful to put long Covid in the more difficult box. It just stigmatises it for everybody, I think, for GPs and for other healthcare workers as well. I think that one thing as well, John was speaking about referral to specialist services. We have had members and still have members who were referred to specialist services who refuse to see them because they have long Covid and they know nothing about long Covid. I think that my point would be given that the health service is under such stress at the moment. The waiting time, for example, for an MRI scan, along Covid sufferer joins that waiting list. Once they have done that, then they join the waiting list for an ECG and they join the waiting list. One of the questions around an early diagnosis of long Covid, the reality is, and I am putting this out there, is that it is going to be extraordinarily difficult under the current circumstances then, it just finds itself out. I think that we understand that. We all are not immune from realising what is going on in the health services. I think that I pointed out earlier. However, if there was a consistent process for assessment that would, at some point, leave to diagnosis, that would be a vast improvement. It is about diagnostics. It is about diagnostics. The tests are done, but it is not necessarily the tests that would help. There was a baseline of the set of tests that would inform delivery, so that would be more useful. At the moment, as we say, we are talking about the strain on NHS, but the same token, people are not getting anything. They are getting a minimal amount, as we have fed back in terms of long Covid care. They are taxpayers too. I am a taxpayer too. I am entitled to long Covid care as anyone else is. If anybody else is looking to come in online, no. I am good, convener. Thank you all for your patience and your determination to be here. I know that it has gotten some of you some difficulty. I am trying to do the mop-up at the end here. I was interested that you were talking about this before. When you have complex issues, we know that women right now go through menopause and have exactly the same problem. They cannot get that individual treatment. Whether it is menopause, whether it is ME, whether it is long Covid, there seems to be an issue in the health service being able to say, well, that is something that we need to take in a holistic way. How we solve that, I have no idea. Hopefully, this inquiry is going to be able to bring the health service and the practitioners to hear, to have that conversation as to how we can improve that. We do not have the answers to that or the point is to ask the questions to come up with the answers. The support for long Covid, folk who are suffering from long Covid, how do we co-ordinate it? How do we bring it together so that you have the kind of comfort that you are actually dealing with is being dealt with? It seems to me that none of you feel as though what you have got, what you are dealing with, is being taken seriously. I think that that is still an issue. I cannot deny that that is an issue. I think that all of us here would say that not being taken seriously. If I go back to what Brian was saying, it is almost like it is putting in a too difficult box. It is just yet another burden that the health service has to bear. Also, because it is complex, and we know from any complex disease, it is too much for people to get their head around. There is a lot of psychologising going on around it. There is a lot of dismissing and gaslighting. That has gone on for many years with some of the diseases and the conditions that you are speaking about. It is very challenging for people to then—and that is people who have the disease and healthcare professionals—to see beyond that. Those are people that need some assistance and listen to. Even if you say, I hear what you are saying, I cannot solve it for you. I think that for me. Indeed, we are not naive enough to think that it is going to be a magic wand, but if there is something about the message that comes back, it is that we hear you. That is from Governments as well. Please do not try and pretend that something is happening when it is not. I think that we have heard in some of the sessions that there are about 200 different individual symptoms. You could have one, you could have 10 or 50. Is there a possible thought in your head that that is what has happened and that there is nothing that I can do to change that? Do you consider that that is a possibility? No one is going to make 200 symptoms go away. We do not all have 200 symptoms. A piece of research that we did last year—a small survey—came up with your saying a whole range of symptoms, but there is a top six in the majority of people with long Covid, that generally people suffer from. In terms of looking at that, if I was a healthcare professional, then I am faced with somebody who comes and it is like myriad of symptoms, then if I do a bit of research on pub med or whatever it is, I can very quickly see that you can distill that down. Where does this patient sit with that? It is not a difficult thing to do if you are faced with that and you think, oh gosh, I do not know what this is all about. There is the literature there that you can look at that would help you with that. I do not think that it could be that people are short of time. When faced with that sort of thing, it is put in the two difficult parts. I am going to stick with you because I am on a thread here. The rest of you can come in a bit. With that in mind, it can be distilled. What areas do you think need to be prioritised in terms of co-ordinating the care and the help that sufferers along Covid get? I think, and we have talked about, assessment is crucial. The first port has got to be primary care, it has to be said. Would the acceptance of the disease not come before the assessment? One of the things that Ian had said earlier on, that people like to dismiss the idea that the disease exists in the form that it does, would acceptance of the disease not come before even assessment? Well, I do not think that that is a process really. I think that that is something else entirely, as it were. I am not sure that we can influence that with some of the things that we have talked about today around publicity and better messaging, all that sort of education, but we cannot—it is not a process, as it were—that you can go through in a GP practice, whereas assessment, having access to a healthcare professional that can do a comprehensive assessment around the condition and then make some recommendations and then can fill to that person. There is something about, I do not know what you call it, a gatekeeper caretaking function of somebody that says, okay, we have done this assessment, this is what we found and this is where we think this person ought to go next. Now, in some instances that may be happening, but I do not think that is happening consistently. That has to be in primary care to start with, I would think, or based in primary care, just because the way healthcare is set up in Scotland and in the UK. Okay, thank you. Anybody else want to come in? I was just going to say, I was just thinking there what Brian had said, but in terms of, you know, along Covid and support, but actually there is a suite of illnesses under chronic illness, you know, ME has been in the Parliament, the discussions in the Parliament just now, and there are overlapping symptoms, so rather than, you know, perhaps there's an opportunity to actually look at that suite of chronic illness and actually look to deliver support across that whole diaspora of issues, including CFS and ME as well with ME, as I say, being considered at the moment in the Parliament, it would seem a great opportunity to look to do something about that, because there is an overlap of symptoms, but it might be more effective use of resources to address those overlaps, you know, with, as I say, there's similarities in terms of symptoms as well, and actually, you know, have a look at chronic illness as a whole and meet that need collectively as a whole, which would be more efficient than what we're saying, you're not saying reinvent the wheel for ME, reinvent the wheel for long Covid, the problem of ME has existed for, well, you know, it's come back to Parliament 20 years later, but there are overlaps there that can also relate to, you know, addressing some of the fragmentary issues in terms of support, you know, in terms of mental health support, which is, as we said, non-existent, but things about employability and things like that, and I think that's a really useful channel that could be developed and would actually benefit people's lives. I think, you know, in terms, just before I stop, you know, it's really important to also impart the crushing misery of illness in terms of how people are suffering here as well, you know, I'm talking about systems, but, you know, people desperately need that help. It's not being a little bit tired, it's like taking five hours to get out of bed. The systems are important to actually allow you to deal with it. So, let me just clarify what you're saying is, okay, so maybe not long Covid clinics, chronic illness clinics, but it would be a start for one of a better... Yeah, yeah, it would be a start. It would certainly take some of the strain away in terms of addressing these things. Long Covid may have its own pathology, but, you know, at the moment, nothing's being addressed, so... Or virtually nothing, or what's being addressed is... There's very small elements of that being addressed, so that would be an improvement of where we are just now. Okay, thanks, Jo. Ian. Thank you. I wanted to go back to the point that we've all discussed around the NHS pressures that we've got at the moment, and I didn't want to politicalise us, but I don't think putting the NHS into a quango is going to make this any better. There's no going to be any quick fix to the NHS, in which you take the proposed £600 million that the National Care Service Bill is proposing to put forward and actually reinvest that into a properly run, resourced and funded care service by the NHS, rather than having a quango set up that doesn't address the actual needs of conical individuals. The other point that I wanted to raise, and we haven't discussed this, was around the lack of information that came from the Scottish Government about high-risk categories. In particular, in the early part of the pandemic, we heard how the BAME community was five times higher at risk than any other individuals, but then that became a wider issue, and there were other characteristics added into that, and there has still been... I had to ask one of the MSPs to raise a question in Parliament around guidance specifically for the BAME community. We are a multinational nation, and we have not addressed that issue. We've had numerous committee sessions here where the BAME community, the disabled community, have all been taken into consideration. We've talked about messaging time and time again and it's one of the things that the Government... We had Jason Leitch in here specifically talking about how they target the messaging, so I would challenge the point that you're making. I'm going back to when we started in the pandemic and the lockdown. We seem to be getting a lot. I was registered for the UK's daily briefs, and we were going through anything from 30 to 50 a day, and it did take a few months, but there were those references made to the higher risk within the BAME community, but it didn't seem to come from the Scottish Government until quite a bit later on. I do accept that there has been further discussions that way already. Sammi, would you like to come in? Thank you. I'm just hearing that there seems to be this blinkered approach that if someone has long Covid that they will need a certain set of assessments and services that somebody else doesn't need, but in truth, due to the high numbers of infections, it's really likely that people using all the services in the NHS are going to have on Covid, and we should be starting any medical assessment now with telling me about your Covid experience. I'd like to go back to the earlier point about the importance of validation, which of course we do want, but validation isn't treatment. It's really important that the assessment process looks to rule out other conditions and that the patient is validated, but that they aren't just left with validation, that they are given options. At the moment, it feels like there's a lot of standing in the dark sending for tests and diagnostics that aren't necessarily going to be helpful or even prove to be helpful, but if we were to invest in biomedical research so that we aren't wasting these precious resources on unhelpful tests, we could make the most of the resources that are available and serve the people with long Covid, including children and young people, much better. I just wanted to highlight that it seems like there's a silo discussion around people with long Covid needing something above and beyond or different to other people, but in truth, Covid has touched the entire population—people with cancer, people with arthritis, people with other conditions and diseases. This is not pulling resources away from those populations. Actually, it's better supporting all populations. On the point that was made—I don't remember when, I'm having a hard time remembering everything—with diagnostics with long Covid, from what I know, my limited knowledge of medical things. People with long Covid tend to fall into four or five categories with their main symptoms, and I know three of them can be easily treated within the GP's specialist, GP's surgery. One's POTS syndrome, which can be easily done with a tilt test. They have everything they need in their surgery. Another one's MCAS, Mass Cell Activation Syndrome, and that can be easily treated with antihistamines—certain antihistamines help with that. I can't remember for the life of me the third one. I've been trying to remember, but I don't. But these are things that can be easily treated as long as the GP does the research or is briefed and knows that we have these things instead of us constantly going to the GP and saying, oh, look, I found this online, and this is what's happening, or this could be happening. I feel like I'm a guinea pig at the moment, and I'm always going to my GP, and my GP is like, oh, maybe this and that. Why isn't my GP looking into these things? Why isn't the GP interested in investigating? That's another thing that I want to bring up. We're talking about care, but we want results. We want investigations into why our bodies are having this issue. I'd also like to say, in my support group, the numbers are just going up. I started the support group in 2020, and we had a big influx at that point, around the end of 2020. The numbers just keep growing exponentially every year. Just this January, I've added over 100 people into my group. That is probably not the highest. The highest was last year in June, where I added nearly 200 people in one month. This is a growing problem. This is not going away. People are having to leave work. I have people in my group who no longer can afford to pay their bills. Their employers have sacked them because there are no ways for them to work in a meaningful way. They're just making themselves sicker. It's hard to navigate the benefit systems as well, to be honest. A lot of us really struggle with that. Thank you. I'm kind of all over the place. We will be looking at those last couple of issues that you raised as we go through the process, but, convener, thank you. Thank you. We have gone slightly over time, but I thank you. It's been really informative and engaging start to time inquiry this morning, and I'd like to thank all the witnesses for their time and giving evidence. We will continue to take evidence in February and in March before we hear from Cabinet Secretary for Health and Social Care at our meeting on 16 March. If witnesses 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 about how to do that. The committee's next meeting will be on 23 March, when we will continue our inquiry into looking at therapy and rehabilitation. That concludes the public part of our meeting this morning, and I suspend the meeting to allow the witnesses to leave and the meeting to move into private.