Gymru. Welcome to the fourth meeting ofなんです 정al cobaith 19 recovery committee in 2023. This morning we will continue our inquiry into long COVID and I would like to welcome to the meeting Jane Clair Judson, the Chief Executive Officer of Chest Heart and Strokes Scotland. Dr Amy Small Clinical Advisor of Chest Heart and Strokes Scotland joins us online. Dr David Shackles Joint Chair of the Royal College of General Practitioners in Scotland. and Lorraine Crawford, board member at Royal College of Occupational Therapists, who joins us online. Dr Clare Taylor, TASA Complete Health Limited and Expert Advisor on Long Covid to the World Health Network, who will be joining us online very shortly. Thank you for giving us your time this morning and all for your written submissions. We estimate that this session will run up to about 10 past 10, and each member will have approximately 10 minutes each to speak to the panel and ask their questions. For those witnesses who are attending remotely this morning, if you'd like to respond to an issue being discussed, please type R in the chat, and we'll try to bring you in. I'm keen to ensure 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 and witnesses in the interests of brevity. Can I invite witnesses to briefly introduce themselves? Can I start with you, Dr Shackles? Yes, thanks very much. Good morning, everybody. I'm David Shackles. I'm a GP in Perth and Skoone, and one of the joint chairs, along with Chris Williams of the Royal College of General Practitioners in Scotland. Good morning, everyone. Thank you for having us. I'm Jane Clare Judson. I'm the chief executive of Chest Heart in Stuart, Scotland, and we've been working on Long Covid since late on 2020. Dr Amy Small? I'm Dr Amy Small, and I'm a clinical advisor to Chest Heart in Stuart, Scotland. I'm a practicing GP, and I'm also living with Long Covid. Thank you very much. Lorraine? I'm a GP in T side, and I also run a Long Covid clinic, a private clinic in Dundee. I also work with the World Health Network as an advisor for Long Covid. Thank you very much, and welcome everybody. I'm turned to questions now. If I can ask the first question. Dr Taylor, as a GP running a private practice that specialises in Long Covid treatment, what do you think the NHS could improve in Long Covid treatment and services based on your experience? Thank you. In my clinic, the main person seeing the patients is myself as the doctor. Whenever I see a patient, I assess them all individually, look at any tests they might have had, look at what they might not have had, look at the pathophysiology of Long Covid and what underpins it, and from that work out what is likely to be wrong with that particular person. From there, I can then give them treatment and stabilise them, treat them for conditions such as POTS, which is not happening on the NHS, treating them for mass ill-activation, which is not really happening on the NHS, and to co-ordinate their care as a whole. Once they are stable, they can start to rehabilitate, but up until that point it is not really happening on the NHS that they are getting the co-ordinated care and a doctor who is dedicated to their care in the one place. I think that the NHS could improve by having a long Covid clinics in each health board with a doctor to oversee each patient's journey and direct their care. I will move on to the question of what training on Long Covid is available for healthcare professionals and how can healthcare professionals, including GPs, be encouraged to undertake training on Long Covid, if I can bring yourself in, Dr Sheckles? The Royal College of GPs has produced some information and resources on Long Covid, both online modules and also has done some webinars on Long Covid as well, and that has encouraged GPs to access those themselves. One of the difficulties that we have had in Scotland is that, even pre-pandemic, the Protected Learning Time initiative was in abeyance, so that restricted the ability of GPs and their teams to meet together and to take part in any educational activities. That has been a negative impact. We hope that, over the next months, we will be able to restart that initiative, working along with partners in the BMA and the Scottish Government. That has been the fact over the period of the pandemic, which has held back some areas of education. I think that the other thing is accessing good information about on Covid that is digestible and practical, and that is where the RCGP initiatives came in. But sometimes there is a paucity of other locally available information for GPs to access to see what is practically available in their own areas. Thank you very much. With my experience and from witnesses that we have had previously, there has been some people saying that there is no awareness within local GPs, but my experience going to my local GP last week was signed up all over the place saying, if you have got long Covid, please talk to a doctor now. I think that it has varied from place to place, but I will move on to Murdo. Thank you very much, convener. Good morning, witnesses. I should say, in case it is a conflict of interest, that I am a registered as a patient with Dr Shackle's practice. By the grace of God, I do not trouble him or his colleagues very much. Can I ask about the question of the level of demand for long Covid? We believe that there are 175,000 long Covid sufferers in Scotland. I am interested to explore whether there is enough capacity in the system to try and help that level of demand. Clearly, some of these people will not be coming forward looking for support at the moment. Is there capacity in the system to support them? Specifically, is there an issue with inequalities? Are there particular groups more likely to be affected, for example, women rather than men or people with disabilities? We might require additional support. Dr Shackle, do you want to start with that one? Yes, thank you very much. I think that there are all very good questions, and it is a vast area to explore. Certainly our experience, because we have cast out to our membership asking before the committee hearing, was that what was their experience around people coming forward for long Covid. We did not find people feeling that they were overwhelmed with it, but we are also aware that the self-reporting—although when you do the surveys—there seem to be more people out there if they only have long Covid, but they do not seem to be reporting to us. That may be an issue. That is a problem. We need to see and hear from people if they have a condition that we can potentially help with. The other thing is that, from the disadvantaged populations point of view, we are aware that inequalities exist. When we have asked some of our deep-end practices where they deal with more deprivation, they report seeing and hearing less from people with potential long Covid. There is an issue with that. We are aware that that may be a condition that presents more women. Certainly some of our patients with disabilities, particularly learning disabilities, were not hearing from. We were not sure why that is and whether we were getting good access and help for them. Thank you. Dr Amy Small, I think that you want to come in. You asked about numbers. I think that 85 per cent of people living with long Covid are of working age. We need to remember that those are people who have caring responsibilities, both young and old. I feel that upfront investment in their care will lead to long-term support for them being back as functioning members of the community are able to work in society. People are not presenting because they have been repeatedly told that there is nothing on offer for them. They are at home dealing with it on their own because there has not been anything for them to date. As a person living with long Covid, who signed up to a lot of surveys and qualitative research, I received survey after survey every month. It is very tiresome to keep filling out forms when one is not feeling well and filling out forms every month for nearly three years now to say that you are still not feeling well. I confess that I have not filled out one of those surveys for over two years because it did not feel like it was getting me anywhere or anyone else. Although I think that there is a perception that people are getting better, I think that a lot of people are not presenting and are not telling us that they are still unwell. We need to be really aware of that. Dr Taylor, I think that you want to come in. Hi, thank you. I am completely and utterly overwhelmed. I have seen hundreds of patients and just a little bit of background is that I started this sort of work a couple of years ago for a charity online. The long Covid patients started to come forward at start of 2021. The charity went bust in the pandemic at the start of 2022. At that point, I worked with the local health board to see if I could set up a clinic on the NHS. Unfortunately, there was not enough money to provide a doctor. At that point, I was either going to not do anything at all or do it privately. Obviously, there is an inequality there if people have to pay to do it, but it was either going to be that or nothing. The majority of my patients are female. They are usually working age, they are usually previously fit and well on no medications usually to start with, and they are plunged into an utter nightmare from the start. They go on a wild goose chase trying to go to various different specialities. At the moment, they do not really get much of a co-ordination in their care. They often find their way to me because patients talk online, they have support groups, etc. I am utterly overwhelmed. I have been booked up for months and people. I am overwhelmed with all of the stories of their journeys and how difficult they found it to access care. The other thing that I wanted to say was that I do virtual consultations, so I see the patients who are bedbound who cannot even speak to me. A lot of the time, it is their parents, their carers, because even talking for 10 minutes exhausts those people to the point where they cannot function. Those people often cannot access healthcare, they cannot make it to NHS clinics, they will not be going to a rehab clinic to do physio, they are bedbound. Although that is not the biggest part of long Covid, it is still a part where people cannot access healthcare and are unable to even speak a lot of the time. It is quite eye-opening to be doing the virtual consultations as well as face-to-face. Anyone in the country can access my clinic, anyone in the UK can access it, anyone with long Covid or any of those conditions can access it. I cannot even count how many people I have seen since the start of the pandemic. I know that Lorraine Crowther wants to come in, but can I just follow up one point with you, Dr Taylor, which I think is quite relevant? You have obviously developed a specialism in this particular field. Are you the only person in Scotland who has that level of specialism? I have done hundreds of hours of meetings across the world with various groups that are working on long Covid. I have read every paper that there is to read on long Covid. I think that there is some interpretive medicine doctors possibly that do a bit of long Covid, but I am not aware of anyone else that has that level of interest or knowledge, but has seen as many patients as I have. As I said, it has led on from working for many in each charity and naturally patients found their way to somebody that could help. I do not think that there is anyone else doing POTS either. POTS is postural orthostatic tachycardia syndrome, about 50 per cent of long Covid patients have it. Basically, when they stand up, their heart rate goes up, but it can double, and it can even go up to 200 beats per minute washing the dishes. As far as I know, there is not a POTS service in Scotland, so I have taken that on too and become an expert in managing POTS as well. I find it really interesting and I really want to help the patients. I am not sure that it is generally a GP thing to be able to manage all of that, but it has to be a special interest and you have to work at it and keep up to date and be interested. I will add to some of the points that I have already raised this morning. I currently work for a health board and we employ 38,000 staff members. Of those, we have had referrals for 676 patients between the period of July 21 and February 23. We suspect that there are staff members who have yet to be referred. You asked about demographics, so, predominantly, the people that we are seeing are female, very much of working age, because we are an employer. They are presenting with, on average, 12 symptoms, the most overriding one being cognitive fatigue. I suppose that the Royal College of OTs is interested in the medical management of patients with long Covid, but we are also very much keen to express the need for rehab services and for sufferers of long Covid to be able to access a range of multidisciplinary team members. The medics is very much one part of it, but we also need to see the occupational therapist, the physiotherapists and our other AHP colleagues offering support to clients to manage all the normal activities and routines that they really need to engage in to be active members of society and to engage in the things that are important to them. In response to some of the questions about where are people going, there are some small dedicated services, but we also were aware from our members that there are services absorbing some of the referrals. We have information from our occupational therapy colleagues in Edinburgh working in children and young people services. They are very much seeing children being referred in to the rheumatology services in particular, and what they are struggling with is onward referral for these young people. How do they access their mainstream education, finding pathways for them and support them. We have also got a really good example of our colleagues in NHS Lanarkshire, so we have occupational therapists working in primary care settings through GP practices in particular who were able to work alongside the GPs and see some of the patients with long Covid in those practices and support them back to their normal routines and activities. What occupational therapists are key in this, they are one part of it and the medical aspect of it is another, and it is really about reinforcing the multidisciplinary aspect of patients needs. Thank you for that opportunity. Dr Taylor, do you want to come back in briefly? Helpful and obviously very grateful to OT and Pizil and everything for what they do. I just wanted to say something about the pathophysiology of long Covid and the rehabbing of it. Long Covid, I am not sure if most people know what it is, they think that they know what it is but they do not. It is a vasculitis, it is an inflammation of the blood vessels, every part of your body has blood supply, and that is why it is a multi-system disease. The immune system is not working properly, it is overactive, a bit like people of autoimmune disease. When people try to do things, their immune system activates and they feel like they have got flu, for example. When you have a vasculitis usually, there are other forms of vasculitis, and we know this about Covid because there are thousands of research papers. When you have a vasculitis, usually you are under a whole team of people like the OT was saying, an MDT, but you would never try to rehab somebody with vasculitis without giving them treatment. That is what is missing. We always have to go back to the pathophysiology to look at what the condition is. There is a spectrum of mild disease up to severe, but the pathophysiology is poorly understood by most people, and it is a vasculitis. It is worse that we do not further on what a vasculitis is. Only once we target that, and there are studies on going into this at the moment at the ICP. That is when we will probably be able to treat people and rehab people. It is a reminder that this is not a psychological disorder. This is not thinking yourself better or having positive thoughts. This is a medical condition with roots in the blood vessels. Long Covid is canaries in the cold mind because the increase risk of an MI after Covid is 50 per cent for 18 months afterwards. That is a stunning statistic. The canaries in the cold mind are getting symptoms of long Covid, and the rest are not. They are just having the heart attack with the same pathology and underlying it. We know that there are hundreds of studies. I am grateful for all the MDT. I wish I had a whole MDT here with me back home, but it is just a little bit on the pathophysiology. We do not usually rehab people who are un-treated with these sorts of diseases. I totally agree with what the rest of the panel has said on the issue. I want to focus a little bit on the health and equality part. We know that Covid itself affected disadvantaged groups more. It is obvious that it will therefore come through in terms of long Covid. I particularly wanted to pick up on women presenting, so we know that if women present with certain symptoms, they might be judged in certain ways. If they talk about feeling anxious or feeling palpitations, that is often put down to a mental health or psychological issue. We have to be really careful with that around long Covid. There is certainly a feeling that women feel dismissed in general. That is why we have a women's health plan. We need to really take account of that in terms of designing the services to make sure that those biases that we all have and that we all have to challenge ourselves on are tackled as part of that, because it is a majority of women who are presenting with long Covid. A lot of women were on the front line of Covid itself in those caring positions, so we need to take that into account when designing those services. Can I start by asking about the capacity within the NHS? It is fine for us to listen to all the experts that tell us what needs to be put together, but the capacity to do that, so the Royal College of General Practitioners say that increased and long-term investment in access to therapies based on communities such as physiotherapy, occupational therapy, specialist rehabilitation services are important. The Royal College of Occupational Therapists talk about the belief that there is a lack of awareness of how occupational therapy and rehabilitation services can support individuals, but my day-to-day finding is that where people need those services in the community just now, those services are lacking. NHS5, for example, has said to have shortages. It has just not been able to recruit OTs and a whole range of medical professionals. What is the capacity within the NHS right now to deal with all the other pressures that are there? Is there enough capacity? Is there a joined-up disciplinary approach to tackling long Covid? Can somebody go to their GP and be referred here, there and wherever? What is the capacity like? I will start with Dr Shagals. The capacity within the health service, even pre-pandemic, was poor. We have been making that point for many years. Certainly within general practice, our capacity was poor pre-pandemic and it is poor now. Over the last three years, there has been a very small rise in the head count number of general practitioners, but there has been a drop of 3 per cent in the whole-time equivalent number of general practitioners. That is not good enough. That means that the increasing workload, because over that period the population of Scotland went up by 2 per cent. Therefore, we have a dropping workforce for a rising workload. That is not just with our new and emerging condition of long Covid. That is all the other conditions as well. We are in this very difficult part of remobilisation and trying to get through the backlog of multiple other conditions as well, and I have to say that in general practice we are struggling. Over the last year we have had Covid has not gone away, acute Covid has not gone away and we are getting increasing burdens of long Covid. We have had influenza and streptococcus A infections as well. All those things have sapped the strength of general practice with a small workload, so our workforce is down. As Amias said, a great number of the health workforce has itself been affected by Covid and long Covid as well, and that has had an effect too. We have reduced workforce because of illness. That is not just looking at the other areas within the workforce of OTs, physios and pharmacists and our other colleagues as well, where we have still not had a good enough workforce. We are now trying to create capacity, which is difficult, because all the other conditions still need treating as well. We are very well aware, and the chief medical officer has put out a letter of concern from all the four nations, indicating the potential rise of heart disease once again, because we have not been focusing on secondary prevention during the pandemic. We have lots of the risks that we are trying to mitigate, but with too small a workforce. I feel that we need to turn it on its head. Yes, we know that there is no capacity, but I do not think that we can single out long Covid as an individual illness that we want to pick on as to whether or not we are going to manage it because there is not capacity. We cannot pick one condition against another. We have good mass disciplinary care for diabetes, for example. Every patient with diabetes will have an ophthalmologist, have a podiatrist, have a GP and a specialist nurse. That is what we need in long Covid, and we cannot single it out. That is another thing, because those people are not going away, and conditions are not going away, and it is going to continue to develop. I still see people developing long Covid in the last couple of months, who have had Covid recently. We know that Covid is still right in our community. I am working in the GP practice today, where several staff members are off because of Covid. In the third sector, we have capacity. Chest Heart Stroke Scotland and our advice line have been doing amazing work helping people with their breathlessness, fatigue, management and pacing advice. Pacing is absolutely key. Clare will back me up on that. For whatever stage of long Covid you are in, pacing can be really helpful to learn how to conserve your energy. The third sector has capacity, but we have really got to free up the ability for health boards and general practice to be able to refer into us, where we can take some of that workload off the NHS. We have time in Chest Heart Stroke to spend with patients. The advice line team has, on average, about an hour per patient. That is time that we cannot offer them in primary care. GPs do not have that time to give to patients, and we have the ability to do that. A little thing about the fact that so many NHS workers are affected by long Covid. The BMA has run a survey that was still waiting on results to come out, but more than 570 doctors in the UK filled out that survey, who are all people who have long Covid. If I had been diagnosed with my POTs earlier in my journey, I never would have lost my job. If I had seen the right people early on in my journey, I would have been able to continue being a GP partner in East Lothian. That is the big difference. The earlier we get in there with the treatment and management, the earlier we get back to work. We can continue to look after the people who need us the most. I will keep it brief. It is to echo some of the comments of the other members in the panel. We surveyed our members, and what they are saying is that they are having to absorb the extra referrals that are coming from long Covid. We have issues with capacity, as it is, and we are trying to get staff to pick up and see and treat people with long Covid on top of that. I am working for a health board and occupational health just now, and I am very aware of the number of staff members who are sick with Covid. I am also talking to those who are transitioning back to work, and the environments in which they find themselves working in is worrying because of the number of staff who are sick. We have much less capacity in the system to deal with that. We are really interested in increased investment in services that are already in existence. We are putting more investment into current community and rehab services, getting more investment into primary care services, so that we are picking up people at a much quicker and earlier stage to prevent the longer-term impacts of the condition on people's health, well-being and their economic productivity. It is really on that issue of capacity and on what that means. I totally agree with what is being said that the NHS is under pressure. We all know that, but with the capacity that we have, we could work better and smarter. That is where the multidisciplinary team comes in. At the moment, people are ping-ponging between services and between specialisms without much co-ordination. That is not helping the capacity issue. It was a real sense that we could sort that. That is something that we can do now. It is difficult to heart back to the past because we want to look to the future, but this is an issue that was flagged two and a half years ago by Chest Heart and Stroke Scotland saying that we will need to raise training and awareness, we will need to look at the capacity issue and we will need to plan for that. At that point, we did not realise there was going to be 175,000 people with Covid along Covid. At that point, we thought there might be 30,000 or 40,000, and we were saying that we were going to have to look at capacity. That message, for some reason, has not gone through over the past two and a half years. It is a lesson now that we cannot wait another two and a half years to get that right. Goodness knows what it will look like then. For people like Amy, going through that journey, that is absolutely terrible. I also think that there is something around. We want all of our clinical colleagues to operate at the top of their licence. There are things that we can do at Chest Heart and Stroke Scotland about that support around self-management and supporting people through that end of their journey and that part of the journey that we do not really want clinicians spending the 10 minutes that they might have with someone trying to solve all of that at once. As Amy said, we can spend a lot more time with individuals but also at different times. We are not maybe quite as constrained in terms of saying that it must be at this time on a Monday. We can be flexible around that and support people around where they are at home with their condition. That is a key offer that we have made throughout this whole discussion. I would really like to see it taken up. I would love for us at Chest Heart and Stroke Scotland to be overwhelmed with people with long Covid. At the moment, we are not overwhelmed, and the reason for that is the referral process. People might be signposted to us if they are lucky if that happens. In general, what we need is that integrated service. We set up our service to be integrated with NHS. We did not want to be stand alone just off to the side doing our own thing that was not integrated and was not helpful in freeing up that capacity. However, what we have now got is exactly that. We need to sort that out. I would love to come back in a year's time and say, oh my goodness, that we are overwhelmed but we have sorted a lot of the issues. That would be a much better place to be. I am going to bring Claire Taylor in, but before I do, can I just ask you briefly so who at NHS level needs to take responsibility to ensure that you have this much more joined-up approach in terms of the fact that the GPs are running off their feet?  How do we, or who should take responsibility to ensure that these services are working together and are joined up in their clear pathways? Is that the NHS board? Is that somebody within the NHS board? Who is that? Could I maybe ask Dr Shackles first? Yes, thanks very much. I absolutely agree with everything James said there. We do need to think about capacity planning, and we need space to be able to do that as GPs. One of the things that we have been pressing for all from the Royal College of GPs is better interface between primary and secondary care so that we can actually discuss these pathways and have them better signposts in local areas, and that is not happening at the moment. And there are some honourable mentions. I think, you know, the Lothian Reff help guide is very useful because it actually can set out, and so GPs can see out a single point of access where they might want to be able to refer into, but that's not uniform across Scotland. So we do need clearer pathways that GPs and patients then know how they can access it, how to get into the system, and then know what's available because sometimes what happens is services change and services morph over time inevitably and hopefully improve. Then patients may ask, you know, what's going to happen to me? A lot of the time GPs won't know, and that's very, that's dispiriting for patients if we don't know as their health professional what's going to happen to them. That doesn't give them great confidence. So we need to have better direction into the pathways that need to be smoother, simpler, easier to access to all the modalities, both to both specialist care if that's required through either cardiology or respiratory or whatever, to the rehabilitation pathways and also to third sector as well. But who can make that happen? Who should be leading on that? Is it the chief executive of the board that should be saying that this needs to be put in place? You know, who needs to be managing that? I think it probably has to be the chief executive of the board. I think it has to be, we're working in a situation where we have 14 territorial boards, for better or worse, with each board setting up a service in their own area. Now there may be some, you know, discussions and sensibilities about having a super regional service for the most severe cases, but for patients in their area, they are best treated in their own area, in their own area closer to home, and the boards need to make sure that they have the system sorted out. I'm just going to mention that my full name is Jane Clare, and when people are calling me Jane, it makes me think that it's my mum. I'm just on the who should take responsibility for the sort of co-ordination. You know, I think Dave is right that the chief executive of health boards have to take their responsibility and their accountability on that, and we've seen, you know, the diversity that's happening there at health board level. I would also argue though that there does need to be that national steering, and I know that you're going to be hearing from others who are going to talk about that. I think from our perspective, the challenge that we've had there is that there's been three versions of that national steering happening, and none of them have really come to the provision that we would expect to see. I've got no doubt that the two cabinet secretaries that we've worked with have been committed to long Covid and believe in long Covid. They're not arguing that it's not a condition or that it doesn't exist, but there's definitely something that's happened around when we've agreed plans, we've agreed a course of action, that it sort of disappears, and we don't see it coming back out into implementation and action for people with long Covid. I'm sure that there's lots of work happening behind a scene somewhere, I'm really hoping that there is, but we don't see that coming out on the ground, and that's a real challenge as the implementation piece, and that does need to be nationally co-ordinated, I think, to share that good practice and to ensure that health boards are able to tackle the issues that they've got on the ground. Okay, and finally, Clare Taylor. Fact that a lot of people are still getting long Covid, and I think reinfections are going to be an issue, because people are being reinfected sometimes within a few months, and often people are on their fourth or fifth infection by now. Capacity-wise, I've got a good overview of Scotland, with having patients from all over Scotland. Now, I don't think that there is an issue with seeing the GP, but I think that patients are seeing their GPs, and on the whole, from what I gather, with some exceptions, but on the whole had good support, and the GPs are trying really hard to work out what to do with them. They often seem quite happy to see me to take over whatever I suggest, because somebody is giving some input. The problem seems to come when it's referrals into different specialties, so somebody with long Covid might need a cardiology referral for chest pain, a respiratory referral for shortness of breath, a neurology referral for pins and needles in their hands and feet, anote referral for physio referral, and the waiting times are varied for each service, and it's variable who will get at the end of that service. They may well go to cardiology with their chest pain. The referral can be refused, and I have to say that there are lots of rejected referrals. Somebody with chest pain isn't usually rejected from cardiology, but if the word long Covid is attached to it, it seems to make it easier for whoever is sifting through these to say, sorry, I know that we are not seeing them. A couple of years ago, I referred somebody to cardiology for POTS as a GP, because I was a GP as well in practice. I got a rejected referral back saying, sorry, we have no expertise in POTS, get them to visit the POTS UK website. The POTS UK website tells them all about the medications that they could have if somebody prescribed them. At that point, I became very determined that I would be somebody that would be able to do that, but that was a rejected referral, and there are rejected referrals all through the system. I know that there is massive pressures in the system, I totally understand that, but either having rejected referrals and GPs writing back and back and back saying, please see this patient, or waiting a year for each service, in each service, they do not, you know, they do not interact, that is just the way the system is. I would agree that there needs to be a national level of a model, and maybe there could be some individual changes across health boards, but I think that there needs to be a national agreed model whereby, as I think it was David was saying, there is access for GPs to get these tests, for example. Maybe there is a referral pathway where you can go straight to test. GPs with some education could direct people who need to have an exercise tolerance test and who needs to have cardiac MRI. You might want a cardiologist going through the referrals, but they might not need to see the patient like that. At the moment, I think that it is just taking too long. There are too many rejected referrals, and I have to say that at the end of that, when they do see someone, I hear a lot of trauma from patients, and it is quite a lot to take on as one person. It is nothing compared to what they went through, but I hear the same story over and over again of getting to the person eventually and being told that long Covid is not real, or that they are just overweight or they are just dying to show up. Thank you. I am really conscious of time here, and we have three members that we need to get through. I will move to John Mason, please. Thank you very much, convener. If I could start maybe with Dr Shackles. In Chest Heart and Stroke, Scotland in their submission said that, while most GPs have heard of long Covid, so that suggests that some GPs have not heard of long Covid. They also say that most concerningly, there remain clinicians who dispute that long Covid exists. I would certainly be very surprised if GPs had not heard of long Covid. I do not have any survey or research evidence that tells me how much GPs believe in the condition. Certainly, in all the information that we put out, one of the important things is to make sure that we believe our patients and listen to them. That is one of the critical parts of our job. On an individual GP base, I do not know, I cannot comment, and I have not had any feedback that that is the case. Can I ask Chest Heart and Stroke, Scotland? Do you stand by that, that some GPs have not heard of long Covid? We stand by the fact that that is what patients have reported to us, that when they have been in an appointment with a GP they have said, I do not know what this is, I do not understand what this is, so we stand by that. We stand by the patient experience in terms of, I would say that people with long Covid are the experts in this at the moment. They are the people who have been living with the condition, have been engaging with the service and have that insight as to what the journey, such as it is, exists. Certainly from the submissions that the committee has received itself from individuals with long Covid, that thread runs through. Is that the sense that either people do not believe it, they have not heard of it, they do not understand it. Like David is saying, it is not all GPs, but there is enough happening there for people to report that to us and to come through in numbers through the submissions to the committee. If I break my arm or have cancer, I am not the expert, the GP or the specialist is the expert. Why is it different with long Covid? I think the reason why there is a difference happening with long Covid is that it was people with long Covid who termed it long Covid and started to identify what was happening with that condition way back in August 2020, September 2020. When we talk about the expert patient, they are living with the condition, so they are not a specialist who can diagnose, but they are the person who understands fundamentally what it means to them and how it affects in their life. That is something that we would stand by as a third sector organisation is saying, that if someone is presenting to you and telling you that this is their journey, just as David says, we do not believe that people are going to the GP lying about long Covid and trying to make it up. From that perspective, I would say that they are the experts. Very uniquely in this condition, it is not something that has been discovered by the medical community and then has been taken out to people to diagnose them or to find people with that condition. That is something that we should have been doing and have been doing in partnership to a great extent, but it is people with long Covid who have pushed this and have campaigned it. Dr Small, you want it to come in? One thing that I would go back to is what Jane Kerr was saying earlier about a lot of women being affected by this and that the bias continues to run through a lot of society in terms of female-related problems or women who are suffering from these issues. I spoke to a leading cardiologist in Scotland the other day who works for a large health board who told me that the vast majority of his cardiological consultants do not believe in POTs. He is the only one in the whole of that health board that believes in POTs, and he admitted that to me. I think that we have to take that very seriously, because his colleagues—he said, he said, excuse the pun—it is luck as to who patients get when they get referred to cardiology with long Covid symptoms that mimic POTs or are POTs related issues. I think that we have to listen to our colleagues. Our colleagues are telling us that they are colleagues who do not believe in it, and we cannot ignore that. I have been to so many meetings and even Government advisers. Scottish Government put on a webinar for GP teaching in October 2021. There were three Government advisers' clinicians from health boards around Scotland, and one of them stated that it was predominantly women who had overweight and anxiety who stared at their fitbits too much that were suffering from long Covid. That is what is coming through at the top level, and this is happening, and we cannot deny that. If I could return to Dr Shackles, in your submission you say that most people gradually recover but a small percentage continue to have long-term symptoms. Is that based on data and studies and so on? That is based on the information that I have received from the reading and learning that I have done, yes. I believe that long Covid is common to start off with. Many people will have mild symptoms that they will recover from, but some people have severe symptoms that are on-going. I have patients who are on-going with symptoms after two years, but that is a minority. What we do not know is what happens if that is a relapsing remitting condition if symptoms will recur over the period, even if they have been mild symptoms. One of the issues that has come up quite a lot is whether we should have dedicated long Covid clinics or not. If I am understanding your paper correctly, you say that patients need a GP assessment and investigation rather than being funneled inappropriately into a clinic that is designed for one condition. I assume that that means that somebody has multiple issues, one of which might be long Covid, but if they go straight to the long Covid clinic, a lot of other stuff might be missed. You also go on to say that we note that the English clinics have been hugely expensive for the number of patients treated. Is your argument very much that we stick to the GP model and do not go down the long Covid model? I think that we need to look at the evidence that is coming out from those clinics and how cost-effective and effective for treating the patients are. We are not particularly wedded to one model or not, but at the moment it is that question of resource and what a long Covid clinic looks like. As has been said before by colleagues, you have to have the secondary care specialists who are interested and experts in the various areas that we are talking about, be it POTS or muscle activation, whatever it is for that. You have to find those specialists first of all, and that is potentially across each health board area. We have to make sure that that is there and to make sure that we have the resource within the cardiology or respiratory medicine to be able to do that, to put those clinics together. At the moment in my area, I am not seeing that being available. Certainly, to be able to refer into long Covid clinics that will offer appropriate medical advice from people with an interest, that is okay. I approve of that, and from the rehabilitation system as well, where you have experts of people who understand what needs to be done for the rehabilitation of patients with occupational therapy, physiotherapy and dietetics. Dr Taylor, did you want to come in? That could be something out from the Scottish study, our very own study in Scotland, case di et al, and the results were, between six and 18 months following symptomatic SARS-CoV-2 infection, almost half of those infected reported no or incomplete recovery. Whilst recovery states remain constant over follow-up for most, 13 per cent reported improvement over time in 11 per cent of deterioration. From that study, which is a large study in Scotland, no people are not recovering by year, which is just to show there is some evidence for those numbers, and that is probably why the numbers are not going down particularly. If we can get this model of care right for long Covid, we can get this right for so many chronic diseases. What I would love to see is an integrated approach to this, because there are many other diseases such as ME, rheumatoid arthritis and other chronic conditions in which people suffer long-term. If we can get that model right with a multidisciplinary team approach, we can make this better for a huge number of patients across Scotland, not just those living with long Covid. Hartfordshire has a very good model, which is a GP with a special interest in long Covid. She is employed by the local CCG, and she has access to physiotherapy and all the other allied health professionals, but she also has direct access to tests, just like Dr Taylor was talking about. It does not have to be lots of consultants sitting around the table, but it needs someone who has access directly to those people for further advice. So there are models in England that work well, and I agree with Dr Shackles, there are some that do not work so well, but I do not think that we can tar the brush with all of them. Right, I think that I am just going to come back to you, Mr Judson anyway, but you can say something else if you want. My final point was going to be, I think that your paper is critical of the committee for not meeting enough sufferers of long Covid, and I just wondered how many you thought we should meet, should we meet 100, should we meet 1000, how many should we meet? I will take that one first. I think that we did feedback to the committee quite openly about how we felt about the consultation process, and that was based on the feedback from our long Covid peer support group and people with long Covid. I do not think that it is necessarily about 100 or 1000, I think that it is about the multi-ways in which you engage with people with long Covid. For example, we know that it is a condition where you can have brain fog, where you can be tired, and also that the engagement with various processes can be quite challenging. So it is about looking at how it is that you engage across multi-channels and giving people an opportunity over a period of time, and I think that that is really important. I think that there is also something just around the fact of how it is that you continue to engage with people with long Covid over the course of the inquiry, so how it is that you continue to keep those voices really front and centre of the inquiry. I think that it is great that Chest Heart and Stroke of Scotland is getting the privilege of putting that voice forward, but being able to bring people with long Covid to the committee, you did that last week. I have run out of my 10 minutes, so I am afraid that I am going to have to draw that bit to a whole. I am going to move to Brian, and I am conscious of time that we will finish at 10 past. I am going to suggest that we will be extended to 20 past, if that is all right with witnesses as well. I have been obviously listening with great interest to what you are saying. I have a big beef around how we collect and utilise health data and how we deploy that on an IT system that is not fit for purpose. I used to say that long before Covid arrived. What worries me is that we have an NHS system that is under great pressure. It was under pressure before Covid, but it is under greater pressure now. There is access to health services across the country, and it varies greatly. If that is the case, how can we be sure that the data that we are gathering reflects what is really happening in the system? If you cannot see a GP or you cannot get to secretary services or the GP cannot find a way to refer, how can we be sure that the data that we are collecting around Covid and how we treat Covid is accurate? I will come to you first. I think that the first thing to say is that the ONS data is widely accepted as being solid and being able to be used to help us design services and to look at what long Covid is and how it should be dealt with within the NHS. We have data, and our clinical colleagues would come in to say that it is not necessarily a lack of data to help us design services just now. I believe that we could be doing that right now. You have an absolute point around the use of data as it is coming into the NHS and who gets to see it and share it. We know that there is a coding issue at GP primary care practice level. That is something that we have argued for over two and a half years to get sorted. I do not believe that GPs will find it easy to find the long Covid code, mainly because it is not called long Covid, despite the fact that that is what people call it on a daily basis. Using that data to create actions is going to be really difficult. There is also a major issue with the fact that, in terms of the referral situation, we certainly suffer from that as an organisation. In order to be able to receive referrals from the NHS, we currently have to go to each of the 14 health boards and fill out a 40-page form. That is 560 pages that we have to deal with as a third sector organisation to navigate that. That means that getting access to that data and that usage is really challenging for us. We have been told over many years before Covid came along that there was going to be a national solution to this. This was being sorted and that has not transpired. It is certainly not transpired for long Covid or the other conditions that we work with. That is hugely disappointing, because, as Amy has said, this was a real chance to solve that and to sort it. We do not entirely understand why that has not happened. There is an element of people saying that we need to wait for data to understand what is happening, but our clinical colleagues have shown us this morning that there is plenty of evidence in data that we can use to design services. Data is great, but it is what we do with it that really counts. Getting that in place in the NHS is really important internally. I think that I have come to you, Dr Shackles, and we are broadening it a little bit from the GP perspective. When I was in the Health and Sport Committee all of the last term, nearly everybody came in and said, we need our GPs to learn about this condition. We need education in this condition. To me, long Covid has just added to a list of things that we are asking our GPs to learn about. I know that you alluded to the fact that, at the moment, that learning time is not being given to our GPs now. I will take issue with the committee around the committee not taking evidence from long Covid sufferers, because we have done that. I think that there is a very consistent message coming out around a lot of long Covid sufferers. I have had to pay privately because they could not access NHS services to get a diagnosis of long Covid. If I ask you, Dr Shackles, around the gathering of data, how can your members gather the data? First and foremost, they are struggling to access the education that would allow them to make such a kind of diagnosis. I agree that we have issues with the data collection in general practice. That disappoints me to say that. The committee may well be aware that, previously, we had a system, the quality and outcomes framework, where we would code conditions and develop disease registers. I think that we were very good at that in general practice. We had some quite advanced systems to be able to do that and look at the data that stopped with a new contract some years ago. However, as the pandemic intervened, we have not developed newer systems to look at our coding and to make it effective and efficient. I agree with what you say about the computer systems that we have in general practice being not fit for purpose. In my practice, we have just migrated over to the new hosted solution. That is better in that it is much faster and is now usable. However, a lot of other things such as finding the coding or the ability to input data is not much better yet. I and Chris Williams were invited by Gregor Smith to write a joint letter early in March 2021 about coding and encouraging GPs to do that. The problem with that is that there were a lot of other issues going on at that time with vaccination. I think that the letter and the information about coding were probably lost in that noise. I think that we probably can do more work to try and encourage GPs around the coding. However, I would absolutely agree with Jane Clare that we have plenty of other evidence around long Covid. We should not just rely on this GP evidence. It will be useful to look at how we manage in general practice. However, the evidence that we might have in general practice is not going to be essential in designing services. We absolutely believe that that is a real condition. It is a big issue for that. That is why, as GPs, we need to know about it. For many of us as GPs, the Covid pandemic will define our careers, both with the acute and the fallout from it—the fallout being in other diseases and the excess deaths as well. It is a big thing. We need to take it on board and we need to be able to learn about it in all its manifestations, but we need time and resources to do that. At the moment, we are not saying that in general practice. Funding has been withdrawn from general practice over the past year, and that is not good enough. I will expand on that a little further with Dr Taylor. Dr Taylor, you have gathered data and information from around the world, and it concerns me that you have the ability to do that. You have personally taken that point yourself to do that. Do we have an NHS system that has the ability to share data across health boards, let alone gather data from around the world? Interestingly enough, I read an article in Australia that is doing exactly the same problem as we do. It is the idea that we are not sharing data enough. What is the solution, Dr Taylor? I do not think that you missed sharing of data across the board, although everyone feeds into the Government as far as I can work out. I would be happy to work with the Scottish Government to try and sort this out. I have run a clinic single-handedly myself, set it up from scratch, to try and fix those problems. With the issue of coding, just very quickly, as somebody with a vested interest in long-code, I could not find the codes. I had to go by and find the actual code that you type in, the letters and the numbers. If you were going to put in a heart attack into the coding for GPs, you would type in myocardial and it would come in a version, easy. If you try to put in a campaign long Covid, if you try to put in post-COVID, you would get about 100 Covid codes, such as PCR tests and whatnot. That is easily fixed.  I think that people are getting diagnosed. I do not see an issue with GPs not diagnosing people on the whole. I think that they are getting a diagnosis, but they are having to be ruling out other things first, which is natural, with those sort of conditions. You have to make sure that somebody has not got long cancer hiding behind the long Covid. Passed that, we are not counting. We know that 5 or 10 per cent of people get long Covid, so we can work out from that what we think we should be expecting. The ONS survey is pretty good, generally, at picking up who is having symptoms. It does not quite tell you who has got long Covid, but it will tell you who has self-reporting symptoms. It is pretty sensitive. For Scotland, as a country, rather than the UK as a whole, there could be more work done on that. It has to be a co-ordinated approach centrally, and put it all together and work out what the need is. You will be looking at 5 to 10 per cent of the population. It is the same across the world. There will be people who are more vulnerable to long Covid genetically or for other factors, but on the whole, that is what you are looking at, and it does not seem to be going down. In NHS Lanarkshire's submission, I looked at where they said that they expected a bell-shaped curve with referrals, but they have not seen that. They are just constant. I think that putting all the data together centrally, but I have not done any work with the Scottish Government. I have been on my own, I have taken on, I had no idea when I did this. I thought that it would be like any other service, some people might want to come and see a doctor and spend a bit longer. I had no idea that I would be it. Dr Taylor, I am going to move on to Jim Felly, please. We understand that you want to respond to Brian Whittle. Do you want to do that quickly before I come into my questions? Thank you. I will make it quick. In England, the various long Covid clinics are working in networks to share education and learning. The Claire has learnt lots and lots about this, but she has no one to share it with because there are no networks across Scotland to share that information that she has learnt about how to use common medications in an unconventional way, but in a totally safe way to treat the sequelae of long Covid. I think that if we have these long Covid clinics and networks, we learn from each other and we can improve our treatment and management of patients with it. Okay, thank you. Dr Shaggers, can I come to you first? A lot of talk about the workforce pressures. What impact do the workforce pressures have on establishing and actually delivering the services that people need with long Covid? What action could be taken to assist NHS boards to fill the specific posts that are required to deal with long Covid? That is a really difficult question. Within our workforce, it is about retaining people in the jobs. As has been said before, it is because a lot of people are being burnt out by the pressures of acute Covid and then the secondary workload from remobilisation and other conditions. So, some sort of thoughts about that, about how we help people to manage and how we help the workforce well-being as well and putting that front and centre as well. I think that that would be important. I think that as well, if we are looking particularly around the long Covid workforce, is actually making sure that it is not stigmatised. You are being put into a silo of long Covid and that it is not necessarily valued. I think that we might have to change that messaging as well, that it is important, that it is valuable and not just an afterthought. I am curious about some of the evidence that I have heard today. Right at the start, you said that you are not being inundated with or that your members are not being inundated with people presenting the long Covid. I think that it was Anna who said that that is because people have stopped coming because they are not being listened to. Jane Clare is saying that we want to be inundated. You are inundated. Why is that? Is it because Jane Clare's organisation is a third sector? Do the NHS not work closely with this third sector organisation? We know that we have a huge problem. We can clearly hear that. Why is this not being co-ordinated better? Is it because GPs are under so much pressure? Are you not getting the time to think about how we do this differently? Absolutely. We do not have time to think. We are inundated with lots of things, lots of things, lots of other conditions of people coming up. The story that was going around that general practice was closed was a false narrative, I am afraid. We have been open right the way through with our face-to-face and remote consultations. Our members report that they have never been busier. The spike of activity pre-Christmas was unprecedented. There are lots of people resenting, but, as you say, we are not getting time to think and to think how to do things better. That is what we need to be able to do, how we can integrate, how we can interface with secondary care and third sector, and the care sector as well. Before I come back, do you hear Claire Taylor saying that she wants to intervene here? She may have the answer before I ask her. Claire, do you want to come in just now, please? Hi, thank you. I agree with David that general practice has never been so busy, absolutely inundated. In the deepest of 10 minutes, patients have more and more complicated problems that have been built up or have developed due to Covid. I do not think that this is a fully GP manageable condition, even though I am a GP. To put that on to GPs is too much, because you would not expect a GP to fully manage rheumatoid arthritis. You would expect that they would have the right pathway, support their patients and know how to suspect what tests to do to refer on, and then there would be ongoing between secondary and primary care. I will interrupt you for a wee second, Claire, because I am very short of time. I will go back to the question that was going to come to you with Dr Shackles. Does this need somebody else who is not in the front line on a day-to-day basis coming in and having a look at what you are dealing with and saying how do we manage this better? I do not know if I can answer that question. The purpose of this is to find solutions to what is clearly a problem, so how do we sort the problem? The problem is that people have got long Covid. The fact that there has been diagnosed and given a name by patients, would it help if it was the medical practice who said, no, we are going to rename it and start again? We are also hearing today that some medical practitioners do not recognise it. I do not understand why there is so much of this information that is fragmented and it is not working. There needs to be someone else who comes in and says, okay, this is a national problem. These guys are trying to deal with everything else that is going on in the front line. How do we help to solve this problem? One of the key things that Amy mentioned earlier is looking at what has been working in other areas. If networks work very well, let us look at what the gold standard is from somewhere else. Rather than just trying to dream something up out of the blue for us, we have to look wider for that to make sure that we get things right. What we need as GPs is the evidence that our fingertips about what works and the sign nice and RCGP guideline is good. That needs to be a living guideline that is updated to tell us what to do when. That is really important for that. I think that looking at what has worked from other clinics, other networks, other countries even, is probably sensible rather than completely reinventing it. I think that we have got to listen to our patients. I think that just calling it something else because we have decided that it is not going to work. Let us listen to our patients. Let us use the language that our patients are using because that is important. I think that the person says that we have a model in Scotland in Lothian that is an integrated model for long Covid. We just need to embrace a model and get on with that work. The second thing that I would say is that we have been waiting on a national clinical lead. The recruitment exercise is apparently finished in August last year, but we still do not understand who that person is and when they are going to start. We could have someone nationally coordinating on that. The final point is around the referral process. Sign posting to the third sector is not that effective. It needs to be integrated into the system, and that is how we built our service, which is to work in partnership with the NHS. I do not believe that the NHS does not want to work with the third sector. I just do not think that we are enabling that to happen. I have one extra point to make because I do not think that it is fair to leave it hanging. In terms of the committee engagement with people with long Covid, I take the points that you are making. We did feedback to the clerking team about our views on that, and an extension was granted to the consultation process for written submissions. We are happy to work with the committee on those issues, but if I get that feedback from people with long Covid, I will put that forward to the committee and make the offer to help with you on that. I am sorry, but we have 20 pasts. I am going to have to stop that. Apologies that we have run over today. I would like to thank the witnesses for their evidence and for giving us your time this morning. If witnesses would like to raise any further evidence with the committee that can do so in writing with the clerks, I will be happy to liaise with you about how to do this. I will now briefly suspend the meeting to allow a change over witnesses. We will now continue to take evidence on the long Covid inquiry, and I would like to welcome our second panel to the meeting. Judy Thompson, director of training for psychology services, and Professor Lindsay Donaldson, deputy medical director, both of who join us from NHS Education for Scotland. Linda Curry, associate director of NHS Highland, and Heather Cameron, director of allied health professions, NHS Lothian. Janice Heaney, associate director of national strategic networks, national specialists and screening services directorate, and NHS national services Scotland, who joins us online. Manera Armhad, chief officer of public health Scotland. We estimate this session will run up to about quarter past 11, so I'm sorry I'm going to add an extra 10 minutes on so it will be about 25 past 11, and each member will have approximately 10 minutes to speak to the panel to ask their questions. I'm keen to ensure that everybody gets an opportunity to speak, so 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. For Janice, who joins us online this morning, if you would like to respond to an issue being discussed, please just put R in the chat box and we'll bring you in. Can I invite witnesses to briefly introduce themselves and can I start with you, Janice? I am associate director of national strategic networks in NHS national services Scotland and along Covid strategic network sits within my remit. I'm the chief officer of public health Scotland, also the chair of a long Covid strategic network. Good morning, I'm Heather Cameron and I'm director of valid health professions at NHS Lothian. I'm a physiotherapist by background and I co-led some of the work within NHS Lothian around long Covid. I'm the associate allied health professions director for NHS Highland and I'm a clinical lead for long Covid in the board. Hello there, good morning. My name is Judy Thomson and I'm the director of training for psychology services at NHS education for Scotland, where I also have a broader corporate leadership role in mental health and I'm a clinical psychologist by training. Good morning, my name is Lindsay Donaldson and I'm the deputy medical director of NHS education for Scotland at my clinical backgrounds in terms of care and this is the statutory education body and training body for health and social care in Scotland, thank you. Thank you, welcome. I'm going to move to questions and I'm going to move straight to Alex Rowley. Thank you and good morning. I think most people were here for the last session as well so it probably follows on good now that we've actually got you here because one of the issues there seems to be that there is differences. I think one person talked about NHS Lothian having a good model, whatever. So could I ask what are the key enablers and the key barriers to setting up services specifically for people suffering from long Covid? Or I think as one witness said there perhaps that's not how you'd want to do it because a lot of people report to some of that sometimes. So what are the enablers and barriers to start to get services in place that are joined up and personal driven and would you better get the names right this time? Let's start with Professor Lindsay Donaldson. Thanks very much indeed and I think many of the enablers sit with education and training and learning and I think the iterative process of learning as we hear from with the lived experience, as we learn as a profession and as we learn as a multidisciplinary team. So I think one of the key enablers is learning in education and it will take some time, we know some things, we don't know everything, we will keep learning. Okay thank you and can I just go along and ask you next? Yes, I agree with my colleague that learning in education is a key enabler. In terms of how we make this work in Scotland we do need to be mindful of the different geography and the social composition of the populations across Scotland and take account of that in terms of both how we disseminate learning but also how services are constructed and how the networks can work together. So I don't think there's one solution in Scotland that will work everywhere. We need to be responsive to local need and what's going on already in local services both in terms of clinical delivery and education. To add to that really we are seeing multidisciplinary teams coming into play and working very closely with third sector colleagues. So in Highland we're working closely with the third sector group called Let's Get On With It Together and we're thinking of joint groups and things like that. So it's just getting the tiered level of support right? Yeah good and hello. So I'm going to start with the barriers or keep focused on some of the barriers. I think for me one of the overarching barriers around delivering services for people with long Covid is still our understanding of what we mean by long Covid. We've heard quite a robust debate this morning and you'll have heard from a number of witnesses. Long Covid effectively is an overarching term that we are using for a very broad range of symptoms and some of the literature suggesting up to 200. Obviously we know there's probably a core five or six that is there. So in terms of actually we've put an awful lot of things into one pot to try and say right let's come up with a solution to manage this incredibly complex position which is why from an NHS lowering perspective what we have done is try to take our learning and I think this is an enabler from the management of other long-term conditions. So this is a long-term condition. There are some knowns around the pathologies but there are still some unknowns. We know in common with a number of long-term conditions that there isn't always a direct relationship between the severity of the disease and the severity of the symptoms that people are then left with. So we're focusing on from a symptom management perspective that actually we're being reactive and responsive to what people are telling us they are presenting with and rather than trying to label everything from a long Covid perspective we're actually being driven in a long-term conditions model which is very much about if you can manage something medically, if there's a medical target we should be investigating and managing that. If there isn't we should be focusing on the symptoms, how people are presenting and then therefore I'm actually giving them the support through a rehabilitative approach both through the NHS but then through our third sector partners and you've obviously heard from chest hand stroke this morning. So we've turned that barrier I guess hopefully into an enabler. Yeah no thank you very much my colleagues have made my job easier so my up day will be short. I guess one of the things for me which my colleagues started to kind of lean in towards is the amount of evidence and evidence-led decision making. I think one of the positives from our network, our long-quality network, is being able to bring groups of people together from local systems and use that knowledge and to do a once for Scotland approach. So one of our subgroups are the service planners and I know previously some of the witnesses have talked about how do we plan, how do we bring the right services and how do we make sure that the private, the primary, the acute, the voluntary sector, the third sector all can be working together. I think we have an opportunity with the service planning group to support them through evidence-led change using some of what we already have around ONS we mentioned. We've got the relative burden for the burden of disease and we've got data coming hopefully in the coming months from eve 2 as well. How we can use those insights to make them digestible and translatable and based on what my colleagues are using that lived experience as well to help service planners plan and local systems using that multi-disciplinary approach that is happening I agree so we've got learning to share on that so I think that's a massive enabler for us but the other one is that once we do get more robust data coming in over the coming months and I'm happy to share that convener with the committee once it's available and ready that we can use that to help those service planners really bring together the different multi-agency approach across the different sectors. Thank you. Thank you. Is it Janice? It's only me. Yes. Yes, Janice. Thank you. Yeah, as many of us said, the network has brought together service planners from across the NHS boards. We've established peer support forums that enables those service planners and people working with those with long Covid to come together to share best practice and I think that's one of the key enablers is allowing that sharing of learning and best practice across the NHS in Scotland to enable that discussion and looking at what's working and what can be taken back into health boards and in the future we'll be establishing multi-disciplinary team sessions, as has already been previously mentioned, again to look at those complex crises and look at again what's worked what can we take from that in terms of best practice so I agree with my colleagues that the key enablers are around that sharing of best practice and education and learning for those delivering services. Thank you. Thank you. Thank you, convener. Thank you. Thank you. Thank you, convener. Good morning to all the panel. I want to ask around the question of pathways for long Covid sufferers. The committee previously took some evidence from long Covid sufferers who expressed their concern that either the pathways didn't exist or if they existed were not working. You may have seen in the previous evidence session this morning that we heard from Jane Clair Judson who said that Cheshire and Stroke Scotland who do have assistance available, she said that they would love to be overwhelmed with patients coming forward but they weren't receiving them because of a lack of signposting and we also heard, I think it's from Amy Small that she felt that these networks didn't exist in Scotland and we didn't have long Covid clinics as existent south of the border. So I suppose my question is do you accept that there is an issue with pathways either not existing or not operating properly and what can be done to try and fix this? I don't know who wants to kick off. Thank you very much and it's a very big question so I'm sure my colleagues will come in and say bits on that. If I can take some elements off, if that's okay. What we're learning and what I'm finding, what colleagues around from the long Covid strategic network are finding actually that we cannot have a single practice deployed across Scotland, different things are happening in different elements. Then what we have is we've got funding to be able to support services, support the resources in two areas, but then it's that challenge of being able to recruit in a timely manner and how reoccurring that is. That has been worked through with sponsors, with government and with colleagues at the network. I guess your question around do pathways exist, they clearly do exist from hearing from colleagues beforehand in the previous committee, they do exist. I think the opportunity that we can galvanise on is that how can we mimic that for others that are not getting the services or the pathways. So there is an opportunity though a challenge that there is an opportunity to be able to do that. The other piece before I hand over to other colleagues, as they might want to say more. The other piece for me in and around this is also the lack of information that we do have right now, so we do have as I said the ONS data, but we are reliant on people self-referring or understanding that they have long Covid and with Yve 2 study coming that data should give us enough more robust evidence to be able to then target in on areas on people and populations where we do need to be developing the pathways. I think one of the things to think about right now for us all is that we are still in the challenge of recovery. So we are coming of it and pandemic, there is system pressures across the entire system. So we do have an opportunity to work better amongst all of that, but we also do need to be cognisanced that within the burden, the relative burden, the long Covid there's lots of other symptoms that boards, local systems are grappling with. So again, another opportunity, how do we make that sustainable and even use a learning from long Covid to spread across the other pathways? I would agree that there are clearly pathways. Some arguably would be more robust than others. I think when there is a very clear medical or symptomatic presentation, then some of those clinical pathways are perhaps a little bit more robust than when people have perhaps a less medically targetable presentation. For example, chronic fatigue, brain fog, we know that that's a significant issue, but there isn't a single profession or clinical specialty that owns that. So what we're doing, you heard Dr Shackles mention the ref help within Lothian, and we know that that is widely held up and well regarded. It is a clear source of information for GPs. We currently have got some information around our long Covid offer within ref help, but we have a clinical reference group that at the moment have been working through what is the demand, where are we hearing from people around that additional need, and what challenges are our patients telling us. We have a patient reference group actually on-going right at this very minute. We've got another two planned so that we can actually look at the information on ref help to make it clearer for GPs and others to make that pathway. Yes, there are pathways to accept. There are some challenges. It's not perfect, but we're definitely working on it, and we've made great strides already, but more to come. Okay, thank you. Janice Heaney, I think, wants to come in, please. Yes, thank you. Just to build on Heather's point, we, as part of the network, have a lived experience network that sits alongside our strategic network, and it's actually critical for us to get that voice of lived experience into the work that we're doing. So we are involving lived experience representatives in a number of the working groups of the network. Some of that we'll be looking at at the children and young people work stream. Some of that we'll be looking at pathways. So I just wanted to bring in that point that we are, as a network, really committed and absolutely committed to ensuring that we've got that lived experience representation and voice, so that we can understand the experience of accessing those pathways. Okay, thank you. Judy Thomson? Yes. I just wanted to make the point that there's an issue around retention and recruitment. As you are aware, some additional funding has been made available to the health boards across Scotland, but in common with our contacts that we have with Ness across the system, we are aware that it's quite difficult to attract people to temporary posts, and quite a lot that the funding has been provided on a temporary basis, and it's therefore quite difficult to make those posts attractive enough to get the specialists from EHPs and other disciplines into the posts. I think that that is a significant issue, which has an impact on how effective the pathways that have been set up can be, and I think that comes through in the submissions that have been made from a number of our health boards. Sure, thank you. I think that one of my colleagues will be asking about workforce shortly. Professor Donaldson? Thanks very much and thank you to my colleagues. I think that Ness is our role in our role of training the health and social care workforce, accepting their inconsistencies. Actually, there may well be real reasons for differences in how health boards deliver, but Ness, as a multidisciplinary team enabler, has a role, and we'll look forward to working with those networks around the education of the entire team and delivering that in perhaps different models. I think that that's something that Ness is looking at, how we deliver health care and social care, and the multidisciplinary team is key. I just ask one follow-up question to Janice Heaney, if I can. That's about whether there are plans to develop standardised guidance for use across all NHS boards in Scotland, and if so, when is that likely to be in place? I guess that will develop as the network develops. There is a nice guideline, which is a living document, which is the standard clinical guidance in this area. That is the key guidance document that will be used. However, as we develop the network and as we work with the subject matter experts and the service planners, we will look to develop further guidance for specific pathways, if that becomes clear that there's a need for that. However, the main document is the nice guidance that's the clinical guidance in this area. I'm conscious that Linda Curry didn't let you in. Do you want to come in? Just very quickly, I definitely think that there's more we could be doing around communication of the pathways as they're being established. I think that we just also need to recognise that our teams or the clinicians are new in post and have to really be given time to develop their own expertise. There is an expectation that once post holders come into post and the pathway is set up that there's an expert team and the difficulty is those clinicians have come with wide and varied backgrounds, but they do need to be given the time to establish their own skills and pick up on all of the research and things that are out there. I think the other thing we've been developing more recently that's helped is a multidisciplinary triage meeting where we do have one of our secondary care respiratory consultants in helping us to guide our patients or our primary care colleagues through the different clinical pathways and that's been really useful. I'd like to cover if I may, long Covid in kids and the committee has met, we had an informal session with family members of children that were suffering from long Covid and some of these children hadn't been to school in years and it was quite a harrowing session for us all to hear their stories and they felt that there was a lack of support and diagnosis for children that were suffering from long Covid, so I'd like to ask the panel is there sufficient knowledge and understanding among health professionals around long Covid in children and does it impact on diagnosis of long Covid in children? I'm not sure if anybody would like to... Minera, do you want to come in? I'm going to defer that to some of my more clinical and medical chain colleagues, if that's okay, but I might come back after that, is that okay? Sure, okay, convener, thank you. Linda? From an NHS Highland point of view, as you can imagine, some of our teams are very small and integrated. We work very closely with our children and young people, colleagues. We're not seeing a huge amount of referrals coming through that service, but we would be trying to... And we've done this with other areas where it's like major trauma, where we use the staff that have come into the long Covid funded posts to support the children's clinicians because you always need both skill sets. So certainly, children that are being referred will be seen alongside other children within the services. Thank you, Linda. Within Lothian, we're not seeing a massive increase in demand when we speak to our clinicians. We have taken a similar approach with children that we're taking with adults, which is to embed the management according to the presentation. We have got a number of teams who have got significant skills in managing long-term conditions. Depending on what is the key initial presentation, that's where the children or young person would initially get their support, and then they would work across the teams if there were multiple pathologies that we're presenting. But the data on the ground, and I guess I would put that caveat, I heard some of the debate about data earlier and it remains a significant challenge. But the information that we have got is that we're not seeing significant numbers, and the ones that we are seeing are being managed within the services that we currently have. So we haven't set up anything specifically separate, but as part of our work that we've been doing in scoping and looking at pathways, we will obviously be looking at children's services as well. Thank you, Heather. Janice, did you want to come in on this? I can do, yes, again in terms of the national strategic network. One of the work streams that we're just establishing now is a children and young person work stream, so we'll be focusing on that on the coming weeks and months. Again, we'll have lived experience representation on that group to ensure that we're capturing everything that's coming through. But colleagues are better able to answer from a clinical perspective, but from a network perspective, we'll definitely be focusing on that children and young people work stream, so just hopefully that's reassuring for the committee. Thank you, Janice. I was going to ask Manira. I'm not sure if this is a good question for you. What support do children with long Covid have when they're transitioning into adult services? So if they're caught long Covid, say when they were 15 and they're coming up to 18, how do they transition into adult services? Is there support out there for them? So, convener, thank you. A very pertinent question, not one that I have the answer to at hand right now, but there is another point that kind of related, if that's okay with me, if I can come into this. So Public Health Scotland, on a more wider basis, is doing a lot of work around children and young people. What we've now started to focus more and more on is how we help that multidisciplinary team function in really getting it right in early years. So working with schools, working with nurseries, working with the wider system within the local and regional space and part of, and not specifically around long Covid, but actually to identify where support is needed, not just for the child or the young person, but for the family as well. So one of the examples is that we're supporting the build of a new, through a public health approach, a new high school in Liberton. So what does a public health approach mean? And that's not just about the education, but it's about the wider social determinants, about healthcare and the need for the young people, but also the families as well. And I'm hoping, convenier, by having those conversations, bringing a wider public health approach to building services, that we will start to influence how resource is planned at a local level, where the focus should be for communities as well. And we'll start to unearth, and as my colleague was saying, that we are still waiting for a better understanding. And with the network setting up children and young people's subgroup, we will learn more and start to filter that in through various guises that all our organisations have reached into. Thank you very much, convenier. Thank you. I'm going to move on to Brian Whittle now. Thank you, convenier. Good morning. Thank you very much for being here, really interesting in this session. Those who were this morning will know that I have an interest around health data and how we, because we're actually very good at collecting data funny enough, we're not very good at deploying the data. I'm going to speak to a point that you made right at the start, Heather, around the number of symptoms that are involved and can be involved in diagnosis of long Covid. I was just looking here, if you get to a GP and they have to refer, they can refer for chest pain to an ECG, they can refer for abdominal pain to an MRI scan, they can, you know, blood tests for fatigue and brain fog and without questioning something like long Covid, you're going to have a mental health element to that, I'd be interested to hear what you have to say with that, Ms Thompson. But it kind of speaks to this, that's to get to a long Covid diagnosis, which is really a condition, really, of an elimination, as far as I can see. So it's really resource intensive that we're putting on to a system that's already under pressure. And what we heard quite a lot from those with long Covid is they ended up with having to go privately to get that kind of, to get that diagnosis. And then we've heard this morning around the GPs, the pressure on their time and their ability to learn, a capacity to learn and share learning in that experience. So that's a long wonder where we're getting back to the, do we have a data system and an IT system that's fit for purpose, that allows input and output for NHS professionals and even integration with the third sector in that? I mean, I've been longer on this, I don't think we do, but I'd be interested to hear, you know, as a long-term solution, is that the direction of travel should be going? I'll come to you first. So there's a short answer to that question, I guess, which is, is it fit for purpose in terms of giving us the overall picture across primary care, secondary care, specialist services? And the answer is no at the moment. We know that different health boards even have different services. So if you happen to move across different health boards, then, you know, the information is not always easily shareable. We have come a long way, I think, within the health side of it. Our GP systems, people who work in acute hospitals don't have access to that, but we have been able to give some primary care colleagues better access. So I think we've definitely moved on. There is no question that information sharing is far superior than it would have been maybe 20, 10, 20 years ago, but there are still gaps. And there's something around how we set up. The information we get out is only as good as the information that we put in, and therefore it's only as good as how the question that we ask. So if the question is about numbers, we're pretty good at counting numbers. If the question is about a complex diagnosis, then, as you heard from colleagues earlier, if the coding, if you've got a selection of 20 codes and you've got two minutes or one minute to make that decision, then people will pick a quick code. So the systems, there's the aspect of talking to each other, I guess, but there is also about the systems that need to be designed to answer the questions that you're all interested in asking. The systems that we have tend to be designed to answer numbers rather than qualitative information. I think I've met my matron passion for data here. So if I can share a few things from Public Health Scotland as colleagues around this table and yourself will be aware that we are very much evidence-led organisation. So some of the things that hopefully will start to answer some of those questions, I'm not saying it will completely revolutionise everything, but I think that's where we're headed towards. So from a national perspective, Public Health Scotland clearly understands change happens within local systems. And because of that, you know, we have local analytical teams spread across Scotland, working with health and social care partnerships, local authorities, third and voluntary sectors to give them access to that joined up data. Nationally we collect what we haven't got, where the gaps are in the local system and join that to our national holdings. We're also developing what's called the whole systems modelling in Coffinure again, I can share some of this if colleagues are interested. We have our whole systems modelling platform as well, which focuses on demand and need and how we can use or better utilise capacity within the system. These two particularly have been used by chief execs to understand where the pressure is and how we can really work at a regional and national level around resource allocation. So there is a lot that's going on. I think one of the opportunities that Public Health Scotland has now is making that data translatable and digestible by reaching into the local and regional systems and getting them to use that data in their strategic planning but also in their operational service delivery. I just wanted to agree with what Heather was saying about integrated systems, but also an opportunity for us in Scotland is the procurement of the C19-YRS app, which is the York rehabilitation scale or it's based on the York rehabilitation scale. That app, a couple of us in health boards have already progressed with the use of the app, but that is going through that national procurement process at the moment. That app helps our patients, they self-assess themselves, they can go back and self-assess at regular periods. There's a suite of outcome measures on there, we can ask for any formal standardised outcome measures to go on to that system. And then there is also a huge wealth of education resources on there that the patients can access direct. I think what is useful for us going on in a once-for-scotland approach is that we can develop the data collection from that system in a once-for-scotland way. So that's going to be really useful whereas in England that's been done by each individual clinical service. So I think that's going to provide a huge amount of research for us and evidence. I'll come to you, Ms Thompson. I think that the concern here is that if we can't go across an NHS border and take your data with you in a global pandemic where we have global data, if we can't transfer data from one NHS system to another NHS system, how can we expect to integrate internationally to help us develop a strategy to tackle long Covid? I agree with you that it's a significant issue and it's not only an issue in relation to long Covid, it's a long-standing issue which applies across the whole health system. I'm afraid I don't know we have any answers to that major challenge. I know the organisation that I work for, we have a very significant bit of our organisation around digital and digital technology but I don't claim to have any specific expertise in that issue. What could go back to colleagues and see if there's anything else they would like to say around this. What you're talking about there really isn't about education and training and what first development, it's about clinical data that I think you're raising questions about. I think that it's this idea, and I know that I'm against the clock here, but I think that the idea is that if we look at the challenges that GPs want to know, GPs haven't got the time to know and haven't got access to that information and it's how we join those dots up really to make sure that the time they use is best. I know that everyone wants to come back in. Very quickly, I absolutely just need more investment but there is also the system being implemented called care portal where we can see different systems, clinicians can see the different assessments letters and that we are using that in the background so that does pull quite a lot of that clinical information together. I'll stop there. Thanks convener, I think probably my question to follow on because I want to look at the education side of things and just ask you a bit about where that is. At the previous session, we had a paper from Chest Heart and Stroke which said that most GPs had heard of long Covid and that kind of jumped out at me that I was a bit worried if some GPs hadn't heard of long Covid. If we start with GPs, can you give us something of an explanation as to how are GPs educated or their skills are kept up to date and all that kind of thing on this kind of issue? We'd be okay if I took them in two stages. GP trainees, so obviously Nes employs our GP trainees and there are training programmes and so for our GP trainees there are regular training days for example where they would all come together either virtually or in the training days so for example I know that last year there was a training training day on long Covid and then we have our GPs that are working there on the register that are no longer in training and so for the college put out a module, I suspect that's been discussed many times around long Covid with the sign guideline so I think one of the things that comes out around you're right about hearing about it, seeing a patient with long Covid may explain some of the inconsistencies because they may not see somebody if at this stage the numbers of GPs and the numbers of long Covid patients that are presenting that that's maybe where some of the inconsistencies comes. Again just saying that the training is live and as we develop an evidence base that training will continue. I think in your paper it talks about the general practice nursing, GPN, education pathway is that right? So is that the main way into a GP practice? It's not necessarily directly to the GP themselves but it might be through the nurse. I think it's all through the MDT again. I think that's key with general practices working very much in a multidisciplinary way and the more angles and ways we can get into a practice in learning and training then that helps. I should probably not make a confession here but I'm an accountant and we're meant to continue professional development and let's say some of us do it more than others so there can be a bit of inconsistency there. I mean in the general terms would that be true of GPs as well? I think our GMC good medical practice is very clear about CPD in that we as clinicians we must keep up to date so we do have guidance around that. Okay thanks I mean maybe I could switch on to some of the more the land-based the regional health boards. How do you see this picture both of GPs and of other professionals educating them about this? Well if you think about the geographical area that NHS Highland covers and all of the different clinicians that that is a challenge and there is also the priority when a clinical team come into the board of wanting to get on and see the patients and the capacity to also do that education widely across all of the multidisciplinary new team but we are doing that. We meet with our GPs, GP leadership groups, I've met with them a number of times, we meet our clinical teams, we've got the national clinical network that I chair that NSS have set up you know it's actually you know much more accessible now to do training so it is happening but I think you know it's just going to take us time to get to everyone if you like and there are so many other pressures in the system so it is difficult. I mean in Lothian's case I mean we've had them good model of the the kind of pilot I think with chest heart and stroke and I was at a separate seminar about that which was very impressive but I mean is it largely down to individual GPs or other medical professionals to you know if they really want to get into a subject like long covid it's largely up to them or does the health board you know try and push things more? So there's a bit of both as you've practically said every registered healthcare practitioner have regulations around their cpd and they make declarations that they are maintaining their cpd but there is a wide breadth about what people can engage with obviously if something within the board or within primary care is prioritised that will be pushed more but to some extent yes of course there is elements of of self-choice or self-interest. I think there are opportunities for us to look at other ways that we can support that learning and some of that is we talked about pathways earlier and actually being really clear and having really clear guidance for us that's ref help we know that GPs go to ref help to look for information to support them so it might not be that that's that formal learning but actually that is that learning through that process but the one other thing that I think I would say from an education perspective is that I think we also need to think about how we take the opportunities again to look at the knowledge and skills that people already have in learning long in managing long-term conditions so a number of the issues that people with long with long Covid are presenting with we do see in other long-term conditions things like fatigue things like breathlessness things like brain fog and actually we know that our clinicians have got expertise in managing those so there's something around how we recognise long Covid as an entity but that we also don't treat it as something that is completely standalone and unique and different to everything else because there's commonalities and we need to actually I think compare some of our clinical staff to recognise the skills and knowledge that they do actually have in managing some of these presentations so if we took something like breathlessness and I know that's not the only major symptom but it's one of them and when I met a GP practice recently they said that was the main one they were coming across so do and they refer to a respiratory specialist does that respiratory specialist need more education or or anything to do with long Covid or can they just continue as normal dealing with the respiratory condition so it's probably slightly yeah it doesn't have to you but I'll give you a broad I'll give you my broad concept of that is that if they are an expert in respiratory conditions then they will investigate according to what what their their clinical pathways would be do they need something extra around long Covid I think the honest my honest answer would be I don't know at this stage I think they have a breadth of skills that would allow them to manage the breathlessness that is being associated with with long Covid okay I don't know if any of the others want to come in on that point yes professor thanks very much indeed and I think you're absolutely right but I think these clinicians are the ones that will be informing us of what they're seeing because you're absolutely right they've got the skills and I think what's been happening at local level in health boards is that one or two have been the key the key link for the boards and are developing that expertise and becoming the the go-to person within that that area so they will be informing us back so it'll be a circular and are there good networks both within Scotland and outside Scotland as well for these kind of specialists I think there are good informal networks as part of preparation for today we were discussing that with some of the and the key people that have been looking after both patients and colleagues with long Covid and the I think there are certainly informal networks that may formalise and hopefully will formalise in time okay thank you missiney I realise you're not in the room did you was anything you wanted to add to that part thank you yeah I mean I guess just in terms again of that national strategic network approach one of the key tenets of a national strategic network is a real focus on education workforce so we have developed an education at a fairly high level to be to be fair education strategy we've engaged with clinicians who are supporting people with long Covid to identify what they feel they need in terms of that education and development and a lot of what they're saying is it's about you know being able to sign post appropriately to the right resources it's about that peer support and being able to come together to discuss as a multidisciplinary team what the approaches could and should be so that's what the benefit of having that national network enables us to do it enables us to give people the time and the space to come together to have those conversations to learn from peers to look at what's working and what's not and that will will be an iterative process as we go through the network so the strategy is there it's as I say it's at a fairly high level but we'll be developing that over the over time within the network and to ensure that it's fit for purpose and again taking in that voice of lift experience about what they feel is important to them thank you that's great thanks very much thanks govira thank you Jim Felly yeah thank you thank you I'd just like to ask what work has been undertaken to ensure that international good practice and learning is integrated into long Covid services in scotland Professor as I look along the the panel I am I personally I'm unaware of what we're doing internationally with long Covid I don't have any of my other colleagues I've got more experience but that's something that we could come back with around that okay Maneer I'll come with you first thank you very much and just to give a little bit more kind of insights into what the long Covid student network has started to do we're producing monthly bulletins that we're using our resource from public health Scotland to do and that to really make concise information available and spread through the networks the subgroups and for onward Gascade and I agree with what my colleague just said there we're learning here and we're happy to share convener with you examples of that that would be helpful for the committee and but that process will encompass not just what we're doing in Scotland or UK but internationally and available in bite-sized amounts that the communities and the multidiscipline these teams can learn and pick up good practice and what's happening across the globe thank you okay linda yep just really the bulletin is so useful because it's having the time to read and filter all of the research that's out there that's so important and that that bulletin does that for us I just wanted to mention not not internationally but UK wide is the locomotion study which is the I'll just read it long Covid multidisciplinary team consortium optimizing treatments and services across the NHS and that's a national institute of health research 10 10 site study that NHS Highland have just recently joined out the Scottish Board and that just links us directly in and straight into our national network to the learning from nine English and one Welsh site leads University College London Oxford places that have had clinics for quite a while and we can pick up all that learning okay it seems to me he's only 11 how to work out what are the bloody stimulate ICP does everybody know what that is anyway sorry Janice you wanted to come in yeah thank you just to reinforce around the publication of that bulletin so get to hear from linda that she's been in that helpful and so that publication as many have said pulls together a raft of research and information and that's led by colleagues in public health scotland and also the networks linked into the London long Covid EHP network so we are making those national links and I think again as the network develops and we start to work through the work plans for each of these working groups we'll start to look internationally to see how we can we can make links internationally as well we've done that quite successfully in other strategic networks and it's a model that we know works so we'll be intending to look at that as the network develops thank you very much thank you very much Alex Rallye yeah thank you can I just come back on one issue and it was picked up a bit earlier but it was from the last session there was a suggestion that that there are third sector organisations out there such as chest heart and stroke that are geared up can be doing a lot more but almost like you know a pushback from health boards I mean is is there a good work in relationship and does health boards you know see the third sector as having a role and therefore what would be the issue with chest heart and stroke when that maybe yeah sure well we we developed relationships very early on with it with a well-known third sector group in NHS island called let's get on with it together or lego it and they already had modules around long Covid that we purchased license for that that that you know we're accessing so that I think that's July 21 that some of our patients could access that and the reason we've stayed with that local service that they're involved with us in service planning they have groups they have peer networks they have the wider you know they actually do sort of more you know activities and things like that and are and I think just being you know based in highland is really useful for that signposting and sort of collaborative working so that that is the way we've gone but we did that very early on so there is a view that all these different organisations third sector out there we're using them we're utilising them we're bringing together would that be the general view or is there more we could be doing? I would always say there's always more that we can be doing in that space but to give you the assurance for the committee there is a lot that goes on that actually we don't get to see or hear about so for example in primary care and I'm surprised when I was hearing your previous committee that wasn't mentioned that we have the community link workers you know and there are some of those unsung heroes that have those conversations where the the gp might not have the time where the multidisciplinary team can go and then look at more urgent cases and within those community link workers and they're part of work that the alliance are doing and the alliance are part of our lived experience wider network is that good conversations are happening referrals are being made I think we can always improve on our data capture to be able to showcase that we're doing that but I would like to say that there is a lot that's going on in the third sector that just happens I think we have an opportunity to be able to capture that so that we can tell that narrative tell that story back to the committee and others that work is happening and and also just to reiterate and Jan has touched on it earlier that we do have the alliance with the lived experience network that's part of the long Covid strategic network so we are really listening to the voices and really listening to individuals and their experiences and building that into every level of our network and decision making process thank you thank you thank you and can I thank the witnesses for your time this morning 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 layer with you on how to do this the committee's next meeting will be on the 2nd of march and we will continue our long Covid inquiry by looking into comparative approaches that concludes the public part of our meeting this morning and I suspend the meeting to allow the witnesses to leave and to me move the meeting into private thank you