National Assembly for Wales

Good morning, and can I thank you all for coming along this morning—very helpful for us to understand the implications of long COVID? Some of my colleagues on the committee will be asking more specific questions on the care and treatment and services that you have received. I suppose I want to start off by: can you just give us an overview of the symptoms you've experienced of long COVID? We understand the term 'long COVID'; what we are not understanding clearly are what symptoms are caused in long COVID or what kind of symptoms you've experienced. So, it will be helpful for us to understand how you identified long COVID and the symptoms you had. Who wants to start off?

Okay, who wants to kick off? Georgia?

The way I see it, I'd go for—. Oh, go on, Georgia, you start off.

Okay. I had a range of symptoms. Actually, the symptoms of the initial COVID then continued into long COVID, so there isn't really a clear line between them. When I had COVID initially, I first had a sore throat and a headache in the morning when I woke up, and I felt very hot, although I didn't actually have a temperature. By the evening, that developed into shortness of breath and tachycardia. Within a few days, I had quite severe brain fog; it was difficult to think straight or to form thoughts that made sense. It was difficult negotiating everyday tasks, basically, that I'd taken for granted a few days before. I had a loss of appetite, altered taste and smell, and memory issues as well; I couldn't seem to remember what I was doing from one minute to the next. And then, as it moved into long COVID, the tachycardia and shortness of breath were the main things that I struggled with. But I also had fatigue, where my whole body felt like lead, it was very difficult even to sit upright; I just wanted to lie flat and any movement was a huge effort. Then I went through a bunch of neurological symptoms.

So, symptoms morphed over time. For a few months, those were my symptoms, and then, by June/July last year, I had migraine, difficulty walking on occasions, difficulty communicating—my brain fog got a lot worse, so, cognitive impairment—I had hallucinations on occasion, visual disturbances, blurry vision, conjunctivitis—I've made a list; there are so many symptoms, and I knew that I would be asked this, I wrote some notes, because my memory is still difficult—acid reflux, food intolerances, allergies got worse and I had some new allergies that passed after a while, they turned out to be temporary, swollen throat, difficulty swallowing, all sorts of things.

Thank you for that, Georgia. It's very helpful for us to understand some of those symptoms and how they morphed from COVID into long COVID, effectively. Can I ask if any of the others actually had any other symptoms, or did you all experience elements or all of those symptoms? Dr Frayling.

Yes. So, I had a pretty severe bout of COVID. I was infected on 28 February, and, being a doctor, you sort of think you'll sweat it out at home. I think, a couple of weeks later, I would've been admitted, no problem. I lost 7 kilos in a week. So, after the worst of it, with the coughing and just the total body wrecking, it then went for my gastrointestinal tract, which I put down to not eating for 10 days, but we now know that the virus does go for your GI tract. And, in fact, the virus has been found there up to four months after infection, so it's one of those little privileged places. That's also where they found SARS 1, which is interesting.

I was in no doubt that I was going to take a long time to get better. So, it was upsetting that, about a month afterwards, I couldn't work out quite what the matter was—I wasn't getting better; I'd got worse. My next-door neighbour, who is a doctor, remarked that I looked bad and was I having a relapse, and I said, 'I have these awful muscle aches all over again'. The brain fog, being lost for words and just feeling awful, not feeling you could do anything; profound shortness of breath on exertion—I mean minimal exertion—runs of tachycardia, all sorts of stuff. Then it got better and then it got worse, and, in me, it comes in waves, so I can have a good day, a good week, then a really bad day or a bad week, and it can flit between the two within an hour. So, I have a chronic relapsing sort of pattern, in contrast to Georgia. I had a lot of cardiac symptoms in the last quarter of last year. That seems to have faded away, but now I've got a lot of neurosymptoms, so the occasional muscle twitching, fasciculations. The disturbed sleep, that's another thing. I'm not a great exerciser, but, for me, I'm an avid reader and I might read or consider two or three scientific papers in a day and write something. I've done an absolute fraction of that over the last year. The concept of an hour's exercise every day is very interesting. I can get to the gate, perhaps, I can go half a mile up the road—I've maybe done an hour in the last month. So, that just shows you that one's capacity is utterly reduced.

People ask me now, 'Oh, are you better?'—they expect you to be better—and I say, 'I don't think so.' I think it's plateaued. It's changed. It's not the same; it's changing with time and it varies day by day. So, there are all those aspects to it.

Lee, did you want to say something?

Yes. I can reiterate what Dr Ian Frayling and Georgia said there. I'm going on for 12 months with symptoms now. It just comes in cycles. It started off with just an initial chestiness, a cough. I'm an opera singer by profession, so I'm used to using my lungs, so I thought that that would just disappear. Then, a few weeks later, punishing fatigue, bitter taste—. As Dr Ian has said, it just comes in cycles, where it'll be kicked off with just walking down the stairs, or trying to do a little bit of home schooling with the children, and then you're just into a cycle of bitter taste, fatigue, achiness, slight chestiness. It's a game of snakes and ladders—up and down—and, as I say, it's worrying because you don't know when you'll get better or if you'll get better. 

Leanne, do you want to add anything to that?

Thank you. My next question was going to ask about the impact upon your everyday lives, and, from what you've all given me at the moment, it's clear that there has been a huge impact upon your everyday lives, and your families' lives. Is there anything that you've been able to do now, irrespective of long COVID, or is it actually affecting near enough every task you do?

You have to learn to pace yourself. You realise that, on a bad day, your little battery has a low light and it has very little reserve. And if you come near to that, you just have to stop. But there are occasions when you can't, you just have to go on, and then you know you're going to pay for it. You really know. On a good day, I could deny I was unwell. And it's soul-destroying and confusing that suddenly you go bad again. My wife has commented, and it's one of the things I'm perhaps most upset about, that I've had a number of episodes earlier on—perhaps because I've learnt to not go near this place—of hypoglycemia, and you get confused, angry, upset, disturbed. I've verbally lashed out at my loved ones, and I so wish I hadn't. And forewarned is forearmed. We were asked recently, 'What would you advise people now that you wish you'd known six to nine months ago?' And it is that, sometimes, it can come and go in waves and you really have no idea when it will stop. Nobody can tell me when it will stop, because I and Lee are perhaps the longest people on the [Inaudible.] So, that's something to bear in mind. 

From what I gather, it's not affecting just you; it's affecting your families and everyone around you. It's a whole disruption of the family and home. 

Yes. They have become my carers and they didn't ask for that, and I do not want to impose it on them. But they have to work around me. 

Thank you, Chair. 

Moving on, Jayne Bryant. 

Thank you, Chair, and good morning, everyone. Thank you very much for your evidence so far. It's been incredibly powerful, and I very much appreciate you coming in this morning. Just to talk about the point around front-line workers, really—and I know Long Covid Wales includes many front-line health, social care and other key workers as members—some have called for long COVID to be recognised as an occupational disease, which would make front-line workers eligible for regular compensation payments. What are your views on that? And is that something you'd support?

It was just, 'Everyone, just get over there.'

Dr Frayling.

Some of you may be aware I'm a pathologist. I would give the analogy that if someone down a mine had sucked in a lungful of silica dust or working and had breathed in asbestos, and they had a long-term consequence of that acute episode, there's no doubt that would be an industrial illness. This is the other disease that is caused by SARS-CoV-2. There's the acute COVID-19, which not everybody gets. So, of course, some people are asymptomatic. And then there's long COVID. I appreciate, of course, that Georgia couldn't tell any difference between the two—one merged into the other—but often people do see a distinct gap of a few weeks between acute COVID and then the onset of long COVID. So, there are other points of, as it were, dissimilarity. But, yes, in my mind, this could be classed as an industrial disease if you've caught it because of a primary failure with the initial exposure to the agent.

Okay. Jayne.

Thank you, Chair. Thank you. You've touched, this morning, on how it's impacted on the quality of all of your lives, and we've had evidence from other individuals who've said how they've been severely impacted by COVID-19, and many people have described feeling isolated and alone. Has Long Covid Wales been involved in any discussions with Welsh Government or NHS Wales to be able to share your and others' experiences?

Georgia.

We have had one meeting with the Welsh Government post-COVID response team, in which we shared our experiences as a group and the experiences of our group members, and they have arranged with us a further meeting so that they can go through their plans with us for a response to what they call post-COVID syndrome.

In addition to that, we are, as a group, working with the Welsh COVID recovery app which, when it was released, many of our members felt was very unsuitable advice for people with long COVID. And so, as a group, we're meeting regularly with the app developers and a representative from NHS Wales to put a dedicated long COVID section on that app, which I think will be a good, hopefully, digital resource. That's what we're aiming to create. However, a digital resource is not enough in this instance. A digital resource doesn't replace other services that people need, because people in the midst of terrible brain fog and cognitive impairment struggle to use things like apps. An app on its own is not a replacement for healthcare services. We're working very hard to make that app appropriate for long COVID, but it's not enough. And you're right about the loneliness and the isolation. Just this morning, I had a message from somebody, through our Long Covid Wales campaign page on Facebook, which said, 'I've just seen you on the news. I didn't realise there were other people like me. I've been ill for months and couldn't understand why I didn't get better from COVID, and I thought I was going mad.' And that is a very common experience. I've heard that from a lot of our members, particularly when you expect to get better in two or three weeks, and then you don't, and then, if your GP is quite dismissive, which, unfortunately, a lot of people are experiencing, people around you don't understand why you haven't got better and you're the only one who knows that you're not well. In many ways, it's an invisible illness.

The brain fog bit, it's insidious; it comes down on you like a veil. When it goes off, you suddenly realise that, yesterday, a week ago, a month ago, you were doing something and then you gently put it down; you didn't probably drop it. It's, oh, you didn't respond to something, you didn't get back to somebody. You worry about keeping on top of things that people want off you. That's really unpleasant.

Yes, noted. Jayne, are you done?

Yes, thank you, Chair. Thank you, everyone. 

Well, seamlessly, we move on to Angela, then. Angela.

Thank you, and good morning. Thank you for your written evidence and thank you for your searing honesty, because we need to hear it in order to be able to reflect your views back to anybody and everybody else who is interested in how we can help. In your written evidence, you were very clear about the difficulty of access to GPs. And, in fact, I have had this reflected by constituents of mine who've written to me to say, 'Nobody's listening. What do I do? I've been discharged from hospital', and they've gone on to outline symptoms, very similar to the ones that you've outlined. Could you perhaps just talk a little bit more about that and about why you think people are being turned away from GP surgeries without having these issues investigated properly?

Okay. Lee.

Yes. I'm going to start with a positive. I've been very lucky that my GP has been very understanding and has helped me a lot. But, unfortunately, I'm in the minority. I can only speak for the people in the group that—as Angela has mentioned, the majority of people—are getting dismissed by the GP. Again, going back to my own GP, he was willing to work with me, to listen and, as things have been ongoing, there have been articles in the British Medical Journal, and he's been willing to look at that. But it seems, within our group, that a lot of the GPs are not aware of long COVID. As I say, my GP has been understanding, in the fact that he's reassured me in certain things, but doesn't know where to put me or to send me or what to refer me to. A lot of our members, their GPs are referring them to Long Covid Wales, as they don't know who or what to send them on to. So, a lot of GPs are still not aware, I personally think, that long COVID exists, and a lot of them are just ignoring it or are saying it's all in the head. To quote Dr Ian Frayling, yes, it's all in our head, but it's also in our lungs, it's in our heart, it's in our kidneys, it's everywhere. It's frightening. Again, I can only say, speaking for myself, I've had a positive, but the majority of people are not so lucky.

Does anybody else want to say anything?

A forest of arms—Georgia first, then Leanne, and then Ian.

Okay. If I could just add my own experience to that. One of the things that is happening that's very common is that people are getting basic tests through their GP. They're getting a blood test, they're getting a 30-second ECG, they may get referred for a chest x-ray, and they may get a course of antibiotics. I had all four of those in the initial months when I didn't get better last year, basically. And the chest x-ray, the bloods, the ECG, all normal. I was still struggling to breathe, even though these tests came back, as I say, within normal range. But the GP's point of view is, 'Well, everything's normal. What's the matter? Is it anxiety?' And I literally had this summed up very recently. Recently, my mother paid for me to have a private consultation with a mast cell activation syndrome expert, which is what I'm pretty sure that I'm suffering with, and was confirmed by that consultation, and my GP, in a referral letter to that consultant, the first thing he wrote in that letter was that I'd had no COVID test and no antibodies test. So, immediately, there was a doubt over had I had COVID at all, when actually those tests weren't available to me—there was no testing in the community back in March last year. And then that was followed up by saying that although I complained of shortness of breath, I was speaking in full sentences on the telephone. Now, I was very clear at the time that my shortness of breath was intermittent; I wouldn't have rung during an attack of shortness of breath. So, that kind of attitude was repeated time and time again in that letter. There were seven or eight instances where my symptoms were dismissed or explained away. I've felt very not listened to, and that's a really common experience.

Leanne.

Dr Frayling, then I've got Jayne Bryant with a supplementary. Dr Frayling.

Thank you. Well, if I'm an expert in anything it's diagnostic tests. Dai will understand this is a new disease. There are no diagnostic tests for long COVID. There are diagnostic tests for SARS infection and acute COVID—I'll grant you that—and the signs of having had those infections. So, it's down to basic medicine. You diagnose this on history and examination, and you do not deny people. It's very cruel to hear stories of people being denied.

I started in the world of cancer genetics 30 years ago. We didn't know any genes; we only had a vague idea what to do. You start from scratch, you see 20 people in the morning and you get an idea; the next 20 that you see, you have a better idea how to deal with them. This is how you deal with this disease: you have doctors seeing people laying on their hands and saying, 'We don't know exactly what causes this, but you do have something, and together we will get there in the end.' That is a very important principle. My GP in the Vale of Glamorgan, I was her first patient. She had only ever heard about people with COVID. My next-door neighbour looking after 5,000 army recruits, I was the first person he'd met and seen the effects of this.

So, there is a very high prevalence of abnormalities of the heart, the lungs, the kidneys, liver, other organs, such that if you are reassured by having such tests that you do not have something, that is very kind and reassuring. I know from my background in genetics that having the results of a test, whether it be positive or negative, can be hugely reassuring, and it's been brought home to me. When I had an echo scan for my heart in Bridgend before Christmas, it was very reassuring to know I had no physical damage to my heart, so whatever was causing all the tachycardia and everything else, it wasn't that. So, you move a step on. If I had had something, well, I might have warranted having a pacemaker or something, some medicine to correct my rhythm, or having an operation to do something. So, there is huge value in investigating people, simply to reassure them they do not have something, especially when there's a very high prevalence of pathology on spec. So, that is why we would like to see people being investigated.

After you've done 100 patients, and you find that you almost never find something in particular circumstances, well, fine, you change what you do. If you suddenly find, like some studies are doing, that 68 per cent of people have cardiac abnormalities, well, you stick your ears up and you bring forward when you do those tests and what you might do about it, but you don't sit there saying, 'Oh, we don't know what causes it, and we can't do anything.' We all accept there aren't any specific treatments, but we're all out there willing to be experimented on to try and find them.

Well said. Jayne, you had a quick question.

Yes, thank you, Chair. It was following an answer that Georgia had given around those people, including Georgia, who wouldn't have been able to have been diagnosed with COVID because of the lack of testing at the time. I'm just wondering about those experiences of people who wouldn't have had any tests, wouldn't have gone to the GP at the time, just would have been staying at home, but would have no idea, and that would take up quite a lot of people, because that would have been over quite a lot of months, and just, perhaps, any experiences that people you're aware of have had of that and the seriousness taken by GPs and other services.

Okay—

Sorry, before you answer that, can I add in another question, because it'll be answered in the same—. I think you could wrap both answers up. Some of my constituents who've been hospitalised because of COVID and have been in high dependency have talked to me afterwards about feeling, basically, post-traumatic stress, because it was just such a huge shock, that whole intervention thing. One person actually talked about survivor's guilt. I think that does sometimes happen, Dr Ian, with people who've been in high dependency units or intensive care units, anyway. So, for GPs or any doctor to say, 'Well, we don't really know', I just think, 'Well, hang on', because there are correlations there, aren't there, with some other areas.

Yes, I can tell you for nothing that bad acute COVID put the fear of God into me. Dai will understand the phrase 'Cheyne-Stokes breathing', and when you notice that, and when I heard Leanne talking about how her pattern of breathing had changed, it brought tears to my eyes. It upsets me seeing people on the television acutely ill, where they say, 'Some viewers may find this distressing', because you have a perfect empathetic link to people in that situation. So, yes, and it's frightening having long COVID, and that is upsetting and induces depression and anxiety, but what you have is nothing to do directly with that. It'll make it worse, so that's when—when I hear of people being told, 'It's all in your head, go away', I feel I want to take that person outside and have a word with them.

And, obviously, Jayne's point about how tests were not available in the community for months—

I perfectly just missed out on that. I was just too late to get it in the community, and because I wasn't admitted, I didn't get a test, but a mate in the business sent me an antibody test.

There we are. Georgia.

I'd just like to mention—so, I don't think tests were available in the community from early March until May, so there is a huge number of people who didn't get tested, who aren't recorded in the official figures, and who never have been recorded in the official figures. These include people that I've heard directly from in our group, including somebody who works in an admin role in the NHS who went for three months without sick pay, because her doctor didn't record COVID or long COVID on her sick notes. She was off sick, she had no sick pay at all, because she wasn't covered by the special circumstances of the NHS sick pay without a diagnosis. Sadly, that's not the only person that I've heard of in that situation.

And that was the importance of what some of us were saying at the time, 'We need the testing in the community, guys.' Time to move on, Angela, sorry. Rhun, nesaf.

Who wants to take that on? Dr Frayling.

Yes. That's a very good point, Rhun. Thank you very much. I think there's been a great deal of confusion—and understandably, I guess—that there are of course the effects of being in intensive care for any reason—being ventilated, losing all your muscles, et cetera—and of course, you need all sorts of rehab to be able to get over that. Then there's this second long-term effect of the virus on top of that, and undoubtedly, some poor folks are suffering from both. So, yes, that's the problem; people get dismissed because they haven't been hospitalised, because they haven't had a positive test for acute COVID, and that causes great problems and confusion, both in the general public and the medical profession.

Dr Frayling.

I can appreciate that people are saying they want to mould existing services, but that risks doing everything in a disconnected way, and we're dealing with a new disease, which we do not yet understand, and I think it takes a pooling of minds and resources to tackle this. I have seen examples of long COVID clinics—perhaps we all have—for example at University College Hospital in London, and also at the Royal Victoria Infirmary in Newcastle, and at that location, it showed that they'd seen, oh, I don't know, 20, 30 patients in a morning, and then they all sat down afterwards and compared notes to learn about it. And that reminded me of setting up cancer genetic services 30 years ago in the UK. That's the way you learn about it; that's how you learn what to do about it. Picking and choosing who gets this test and what test; I can understand that that may be resource driven. That also directly feeds into negative ascertainment bias. If you never see it, it never exists; you don't learn about it. And it's a self-fulfilling prophecy. If you had an open mind in an 'open'—in quotes—clinic, you would learn very rapidly what this disease encompasses and needs, and then you can fine-tune to this, that and the other. I think that would be a more intelligent approach, based on experience of 30 years with new diseases, allegedly—you know, allegedly new diseases.

'New disease, big numbers, new system, new service', I would say. Does somebody want to add to that, or Rhun, are you coming back?

No, no, no. Georgia Walby.

Georgia.

I just wanted to add, as Ian said, these one-stop-shop clinics are needed because people have not got the energy or resources to go back and fore to their GP and be referred to different places. They need to go to one place and get treated. You give up, if you're not being listened to at a GP, I can tell you from personal experience, you just give up. You put off ringing, because it takes too much energy, because just that phone call becomes a battle, and so doctors do need to develop specialisms by having these one-stop-shop clinics, but patients also need them because people are very unwell, and they're not able to negotiate a system that is very difficult to negotiate. There's also the question of waiting lists, as Leanne mentioned—people are getting referred onto very long waiting lists.

Excellent. We're in the last five minutes, Rhun, so keep it short.

I totally disagree. We want to be treated and we have a right to have a good chance of getting better.

Georgia.

There are emerging patterns. There's dysautonomia, postural orthostatic tachycardia syndrome, mast cell activation syndrome, all of which have existing treatments for them, and which need to be treated. But there's also undiagnosed organ damage, and it's really important that they get the MRI scans that they need. So, I think those are probably four of the broad patterns that are emerging at the moment.

Yes. That's another reason for having your patients in a single place: you can put them into properly controlled clinical trials on whether this, that or the other works. One of the urgent things I would like to see a result on is what is the effect of vaccination in long COVID, because there's a lot of ascertainment bias on that, with people saying, 'Oh, it makes me better', but we don't know. That is a really important question, because I'm really frightened that it would perpetuate my disease for another year, or make it worse. Nobody can reassure me—there hasn't been a trial, and there needs to be.

And these have got to be accessible to people in all parts of Wales as well, of course. That's an important point that we—

Yes, absolutely.

We note for the record—lots of nods going on at this point. [Interruption.]—to investigate further.

Lynne, I'm afraid that, despite the fact that your questioning is usually the high spot of every committee, you've got time for one question, Lynne.

Okay, thank you, Chair. Can I just ask, then, if you've had any contact from families worried about children suffering long COVID, please?

Who wants to take that on? Georgia.

Yes, we have. We have several families that I'm aware of in our group who have children with long COVID, and that's in the Wales group specifically. Beyond that, in the UK groups, there are lots, yes. We're definitely aware of them.

Thank you.

Well, that's a hard question to answer, because everybody measures it in different ways. I think the best we can say is that at least 10 per cent of people who had a COVID infection still have some symptoms at three months. Now, it's hard to know how much more than 10 per cent it is, because some people who didn't go to hospital didn't get tested for a COVID infection, so they're not included in any surveys. Different researchers use different symptoms. There has definitely been more research on people who were in hospital, and I think the estimates there are higher; they're anywhere between 30 per cent and 80 per cent of people who were in hospital with COVID infection. I know the Office for National Statistics have asked a new question in their survey, and we'll be expecting their findings at the end of April, but I think it's not going to go down. 

Well, Professor Altmann will be better able to answer that than me, but we conducted a survey in October and we had over 3,000 respondents, so one of the largest surveys. We found that 80 per cent of people said community testing wasn't available when they were first ill. Some of them have gone on to have antibody tests that have been negative. So, I'm not sure that's the reliable way of testing whether you had COVID in March or April, but Professor Altmann will be better able to answer that than me. 

Yes, come in there, Professor Altmann. Thank you. 

I'd just confirm everything that was just said by Dr Maxwell. Two points, really. One is that, as everybody's heard, antibody levels have quite a short half-life in the blood and do wane over the several months after infection. So, it wouldn't really be a very useful confirmatory test, and, you know, what would it confirm? These are people who are fairly certain they had COVID-19, so we wouldn't actually be much further forward if we had an additional stamp to say that they did or didn't have a certain antibody level. 

What's the latest emerging learning about who might be most susceptible? Are there clear patterns at all, in terms of demographics, ethnicity—which we know has an impact on acute COVID symptoms—and that kind of thing? What do we know?

What we know is that we don't know what the risks are, and that the risks of getting long COVID appear to be different from the risks of getting acutely ill with COVID. Most people are finding that long COVID is more common in women than men, whereas acute hospitalisations and mortality is more common in men. We are definitely seeing more children affected with long COVID than we were with acute hospital admissions. We are going to be publishing a new review next week, and we looked for some of these figures and we looked internationally. There aren't a lot of studies that look at ethnicity. We only found one large one in the USA, which didn't actually find a strong difference between ethnic groups, but that may well be a sampling issue. I think the issue is that we don't really know who is most at risk. Coming back to the thing about patterns, we said in October we thought there were potentially a number of different syndromes here, and we still think that and that internationally and within the UK people are describing different clusters or phenotypes of symptoms.

Angela's got a supplementary here—short and sweet, as always.

Yes, indeed. Thank you. The reason why we're picking up more long COVID in women and young children or in young people—do you think at all it's connected with the hesitancy of men to approach their GPs? Talking about any other illness, we know that men are much less likely to go to their GPs to say, 'I've got a lump here or a bump there' or 'I don't feel very well,' so, having had COVID, do you think that it's partly that sort of cultural—? Are you picking that up at all, or do you think it is purely a physiological difference?

Well, it's hard to know, but there are some suggestions from some studies. So, there is an Italian study by Tomasoni that looks at anxiety and depression, and it was no more prevalent in women than men. And there was a big study about cognitive function by Hampshire that again found, after a COVID infection, women were more likely to have cognitive difficulties than men—. Sorry, that cognitive issues were more likely to occur, and it wasn't by gender. So, I don't know. It's another of these unanswered questions. Because we don't know all the people who are suffering, we don't know what the denominator is, so we can't actually say what the risks are or even what the prevalence is.

Thank you.

For children, in particular, I would say that the statistics from ONS are pretty troubling, if you're looking at maybe—what is it—13 per cent of children under 11 and 15 per cent of those between 12 and 16 who've had COVID registering some sort of symptoms. Is work going on alongside education providers to make sure that that isn't having more of an impact than it has to on education and so on?

The ONS figure for children was having symptoms at five weeks. One of the other challenges we have is most of the studies look at symptoms early on—up to three months. There are starting to be a few now looking at symptoms at six months, but what we really don't know is how many people have still got symptoms at nine months and a year. There is a study that's just been published this morning that was done with the Long Covid Kids group, which looked at 510 children, that shows that, for a significant number of them, these symptoms last a long time. So, I think that is going to be an issue for education.

Do come in there, Professor Altmann.

If I could just add to all of the above, obviously, it's one of the most vital discussions at the moment, isn't it, as we debate the return to school and how to mitigate dangers around the return to school. Many of those mitigations are now in place, but I think in former times we might have been a bit lackadaisical, saying, 'Children aren't affected by this infection, or if they are it's asymptomatic and therefore this doesn't matter,' and this is a real warning to us that we can't let our guard down, because once you know that can affect children, and even asymptomatic children may be percolating it amongst themselves in schools and yet they're still at risk of long COVID, that really needs to feature in all of our planning.

Thank you. I'll leave it there, Chair. We could go on, but we've got a lot to cover. Thank you, both.

Jayne Bryant.

Thank you, Chair, and good morning. Dr Maxwell, you've just touched on this in response to one of Rhun's questions, but you mentioned that long COVID could be a combination of about four different syndromes affecting the body at the same time. Do you feel that the term 'long COVID' is too broad in diagnosing, understanding and supporting people struggling with the effects of COVID? And do you think a single diagnosis is sufficient to plan appropriate services, for example? 

I think people may be suffering from one of a number of syndromes, or more than one. But, yes, I tend to agree with you, 'long COVID' is a general description. And it was important to have that at the beginning, because people were very focused on acute illness and mortality, and it is a term that's got a lot of currency now, but it's used to mean different things by different people. And in terms of the second part of your question, in terms of planning services, there definitely do seem to be people who have discrete needs, and if we're planning one monolithic service, it's unlikely to reach all the people in a timely fashion.

Thank you, Dr Maxwell. Do you think that there's a risk of over-medicalising people who are experiencing long COVID, in relation to what you've just said as well?

That's a hard one. There is quite a lot of evidence of organ damage. So, there are a number of different studies looking at low-risk and high-risk people showing organ impairment, and there's also quite a lot of evidence that some people have deranged blood results. So, for example, there's a UK and an Italian study that show ongoing clotting disorders. And so it's really important that those people have their physical condition monitored in a medical environment to avoid deterioration. But then there are other people for whom their problems are more around cognitive issues, who might be better with psychological support, finding ways of coping with this cognitive dysfunction. So, I think the question really goes back to: are we dealing with one thing, or are we dealing with a number of different things here?

Can I just ask around any evidence for those people who would have had COVID but wouldn't have been tested in the community in the early days, those people who perhaps have since been to their GP with some other symptoms that have come and are perhaps not aware that, really, it stems from COVID? Is there any evidence of that? I've heard about things like diabetes as well, and people contracting that from, perhaps, having COVID. Have you any evidence on that? 

I haven't seen any robust evidence on that, but certainly I've heard, talking to groups of people who come together to support each other with long COVID, that two things happen: either they had a mild or asymptomatic case of COVID and then they became much more ill with their long COVID and they don't associate their current illness with this very mild infection that they had early; or, conversely, they know they had COVID, but because a lot of people only use a very narrow range of symptoms for long COVID, they don't associate what they're currently experiencing with the COVID infection. So, I think, at the moment, we're almost in a position where we know that there are long-term consequences of the COVID infection and we need to get much more precise about what they might be before we can go out and see how many people have got them. 

Thank you. Professor Altmann.

Yes, if I could just respond briefly, head-on to your question. I've been quite outspoken in the past in saying that, yes, they do need medicalisation, rather than just our sympathy or just counting their cases, because these are people who were previously well and now very unwell, long-term unwell, and don't know how long that's going to be for; none of us does. And they really need some robust fire markers and tests and therapeutics and things that can make them better. And I don't know how to do that without working out what's wrong with them. 

Yes, good point. Are you done, Jayne?

Yes, I am, Chair. Thank you.

Lynne Neagle. 

Sorry, I didn't realise I had the next questions. I'm a bit confused. Mine are on the psychological impacts, yes?

Well, 18 and 19.

Yes, okay. Sorry. Can I just ask, then, about the mental health impacts of long COVID?

We know from a number of studies that people say their quality of life is far worse, three months, six months, nine months, after a COVID infection. There are some studies that have actually asked specifically about anxiety and depression. And that's not really unexpected—we know people with long-term conditions do experience anxiety. There is some suggestion that the virus itself may be having some sort of effect on the brain that might create more anxiety. And then there's also this whole issue of brain fog, or cognitive dysfunction, and, as I say, there was a very large study that looked at people's cognitive abilities, which showed that you were more likely to struggle with your ability to find words, to concentrate, after a COVID infection than the rest of the population. So, there is strong evidence that there are a range of psychological impacts. And I think it's important to say that that doesn't mean there isn't a physical underlying cause for that. There is quite—and, again, Professor Altmann can say much more about this—a lot of discussion in immunology circles, and in fact there's a study that's come out from France very recently, where they scanned people's brains and found distinct changes. But I'll let Professor Altmann talk more about that.

The stage is yours, Professor Altmann.

I'll really just add one sentence to that. When I speak about long COVID, and when I speak to policy makers about long COVID, quite a lot of my thinking is drawn from experiences in our lab in the past, working in Brazil on another virus, chikungunya virus. And the reason I bring that up is not to confuse, it's because it's another one that causes long-term after-effects. And in that, the long-term after-effects—a kind of arthritis-like disease—are almost more devastating than the infection itself. So, the reason I bring it up for this answer is that, when they look at their healthcare consequences, what they're really talking about is a population where people are depressed, and sometimes suicidal, and out of work, and no longer economically productive, and it's all that aftermath and all the things that you might think of as being non-medical, soft consequences, that are really the biggies, and really need all the planning, because that's what's devastating them.

And in terms of—. There are two issues here, aren't there? There's people's understandable mental health reaction to the physical impacts of long COVID, but what you're also saying then is that there are actually changes in the brain that could be influencing mental health problems.

Yes.

Yes.

Okay. Thank you. We've had evidence that some people are saying that there's a similarity between long COVID and myalgic encephalomyelitis. Have you got any comments on that, and is there anything that can be learned from the support that's available for people with ME, which I know is still far from perfect, in terms of how we respond to long COVID?

I would say that some people have similarities to ME, but some people don't. So, it may be one of the sub-divisions, but I think we should be careful to say it is just ME.

Good point.

I can only add that, yes, we have a number of conditions like this, don't we—ME and the long-term consequences of Lyme disease as well—where, sure, they can cross-hybridise and feed off what we can learn from each different disease, but I think, at the moment, since we don't know the mechanisms very well of any of them, all we can do is try and do better.

Okay. Thank you.

In answer to your question about a better response than ME, I think it is about believing people and taking medically unexplained symptoms seriously. I think that's the main problem for people with ME: they had something that people didn't understand, and so they were told it was all psychological. It's important we don't do that again, whilst recognising that we don't understand it. And we need to keep our minds open to a whole range of possible explanatory hypotheses, and not narrow it down too quickly.

Because of course, denying the existence of something will actually exacerbate the mental health issues, won't it, really, very significantly? Thank you, Chair.

Great. And we don't know everything; new diseases come along all the time—I'll just drop that in the conversation. Angela Burns, you've got the screen.

Thank you. And thank you, both, very much for your evidence so far and your written paper. Yes, you're right, we don't know everything. So, my first question to you would be: what research should we as Wales, and then we as Wales within the UK or a bigger conglomerate, be actually focusing on in your view? What should we be taking part in? What can we be doing to try and research this? Elaine, you said that there was a very narrow range of symptoms, should we be researching symptoms? Or, as you said, Danny, should we be looking at other viruses that may have outcomes, that are showing outcomes that have similarity? In other words, what can we say to the Welsh Government, 'Go and put some money behind this research into this kind of area because no-one else is doing it or we need a bit of a shove or we need to be taking part in some kind of global research programme on long COVID'?

I can make a start, if you like. Yes, there's plenty you can be telling them about. So, where do you start? You need to know who: you need to be able to find the people, they need to be able to go to their GP and get that recorded and coded as a long COVID case, and they need to be able to be referred to get some appropriate investigations and hopefully some treatment. And I can easily say the words, but I can't at the moment articulate what I mean by the correct investigations and the correct treatment, because we haven't done the research yet. And we need that research because there's no point just taking a part of your hospital and badging it as a long COVID clinic if you don't know which doctor or therapist needs to sit in that clinic, what tests they need to do and what they need to prescribe when they've done those tests. So, it's to do with doing the research and then building the provision that can actually help the people, because, I promise you, there are plenty of them in Wales. I'll hand over to Elaine to see what she thinks.

I agree. So, I think there's a balance between understanding more about the disease and doing something for people now and getting that balance is a pragmatic thing. Lots of people have done estimates of prevalence. I've identified some limitations in those, but I think rather than doing another long list of symptoms, it would be useful to move on to looking at clusters of symptoms: are there discrete patterns? Because that might help us with some of the research about what's causing it. So, I think that would be different from what's currently being done. 

I think there's also in medicine a very pragmatic approach too, so if you have a patient in front of you, you try something, and that was the whole basis for the recovery trial in intensive cares that led to the discovery of dexamethasone. And I certainly know that some of the doctors running the long COVID clinics in England are very keen to move into something like this, where they're saying, 'Well, people in front of us, we're trying to treat their symptoms; it would be really nice to do that as part of a randomised controlled trial.' So, I think we need to balance both: more understanding of what it is, and we need some benchwork, some understanding of the immunology, but we also need to do something for people now. We can't wait two years until we perfectly understand it before we start saying what the treatments are.

Yes, and I agree with you, and one of my follow-up questions was going to be about what we know about long COVID and COVID per se, and how much that should govern what efforts the Welsh Government should put into exploring this issue and trying to support it out in the community. The previous witnesses to you, who were all people who suffer from long COVID, were reporting a very mixed view on support and knowledge from general practice, for example, who are obviously our front line. Do you have a view on what else we could be doing and how much the Government should listen to the research that's out there in trying to formulate the support services they should have in the community?

I think there are three broad groupings: there's the identifying the organ impairment and the potential deterioration. We know from the Coverscan study, for example, that people who were considered to be low risk, who probably are not being referred in, may well deteriorate. And there's some research that we'll be talking about in our review from the Defence Medical Rehabilitation Centre in Nottingham, which has been looking at service personnel and saying that people who are referred later have deteriorated more and they tend to be the people who weren't tested and weren't in hospital. So, there is something about everybody having a robust physical examination to make sure that something that has the potential to deteriorate is managed. Then there's a group of people for whom rehabilitation is the answer. The people who are not ME and exercise intolerant probably do need rehabilitation, because they've been deconditioned from being inactive. And then there's a group of people who are quite stable, but are not getting better, who need the long-term support, which may be social support as well as adjusting to a new health status, the way we do with other long-term conditions.

Thank you. That's really helpful, because that does give a direction to aim Government in, and I think that's very clearly sliced it out. Can I ask a really stupid, totally unscientific question? Whenever you read the media reports—you just read reports and listen to bits—people talk a lot about this is all not dissimilar to SARS and MERS in terms of respiratory illnesses et cetera. Is there research on—? Do those kinds of viruses—? Have they in the past demonstrated long-term effects after people have had SARS and MERS? Can we do any learning, and are we doing learning from what they are? Because my understanding is they're very similar kinds of viruses, if viruses are allowed to be similar.

I think Professor Altmann—.

A great, great question, and not a stupid question at all. Obviously, they're very closely related and very similar. I think, unfortunately, we can't learn that much from them because the data set was so much smaller than our current COVID-19 data set. So, this is the virus at the moment that we know the most about.

But you were asking about what we can know and about immunology, and I'd say a few things. First of all, as I mentioned before, we just don't know enough immunology or mechanism to know what to do. I've written and spoken in the past about the different hypotheses—either that the virus gets into organs and does damage and kills cells and causes scarring, the kinds of things that you see in the MRI studies, or that some virus stays on board persistently and lives in places like your gut, or that the virus chucks a sort of hand grenade into your immune system and dysregulates all the subsets, or that it triggers a full-blown, bona fide autoimmune disease, a bit like one sees in arthritis and things like that. At the moment, we just don't have the data to know any of that.

But if you're asking a Welsh question, we do know that Wales punches well above its weight in immunology and has outstanding immunologists who are as well placed as anybody on the planet to look at these things.

I couldn't agree with you more. As chair of the cross-party group on medical research, I'd like to make a quick plug for the fact that we've begged for extra funding, because, actually, we know that Wales is outstanding when it comes to all of the immunology research that's going on.

I suppose a final question from me is—. We've spent a lot of time, haven't we—? People have been falling sick with COVID, people have been going to hospital with COVID. 'Oh my God, how do we stop transmissions of COVID? What should we do?' So, we've restricted, had lockdowns et cetera, et cetera throughout the whole of the UK and throughout a big chunk of the world. How much do you think that the effects of COVID—the long-term effects on the people who are suffering—? How much do you think information and our growing knowledge of the devastation that long COVID can cause to people, and the numbers—? I understand it's maybe about 10 per cent or 12 per cent of people, at present, reporting long COVID, and I'm assuming that will just grow as we broaden an understanding of what long COVID really is. So, how much do you think that kind of information should also be put into the mix when trying to decide what we should be doing with restrictions and our new way of life? Because, actually, let's not just talk about restrictions. We've got to be really honest; this isn't going anywhere. All the professors are already talking about wave 3, about what's going to happen in the autumn. We're going to have to just make massive adjustments as a human race, I suspect, for quite a while longer. So, just your thoughts on that.

I'll start, very briefly. I think one of the hardest things for so-called experts in the COVID pandemic has been the crystal ball gazing, because you're either too damning in the prospect and accused of scaremongering, or you're too lackadaisical and accused of not spotting things. So, we don't know, for long COVID, whether we're talking about a story of months or years or decades, or lifelong. I hope it's going to be the shorter end of that spectrum, not the longer, but it could be that, as we get the acute infection under control from the vaccine, it will be this aftermath, this legacy of long COVID, that troubles us far more in terms of our healthcare burden and expenditure, depending on how long it goes on for. I've discussed this before as a sort of parallel in terms of the number of cases with arthritis that we have, which is one of the biggest draws on our healthcare spending. Depending on how long this goes on for, this could be similar, or hopefully it could be much less. We just don't know. But I'll hand over to Elaine.

In terms of public messaging, I don't think the public understands the risks of long COVID. I'm quite worried myself about getting long COVID, having spoken to people with it. We know that the vaccines reduce the risk of being hospitalised and dying, but we don't know what effect they have on transmission. So, potentially, we could reduce the number of people being admitted to hospital, but still people are getting infected. And because the data so far on long COVID shows that some people had very, very mild cases of acute infections and have gone on to be quite debilitated, I don't think seeing a reduction in severe COVID will necessarily see a reduction in long COVID. Now, I'm not saying it will; I'm saying it's one of the unknowns. Also, we know that long COVID is much more common in young people. In our survey, 67 per cent of people were under 55. Certainly, Davis, in the patient-led international research, found something very similar. The people who think they're at low risk of dying from COVID don't understand that they are at risk of long COVID, which is a message, I think, people need to understand in order to modify their behaviour.

Thank you. One more quick question about mutations. Is it too early to have any information at all on what other things the mutations of the virus might produce?

Are you asking if there's a link between the mutations and the rate of long COVID? 

Yes. I just wondered if—. I'm guessing it's too early days.

It's too early, I think, although Professor Altmann might be able to say more.

My feeling about the variants is that they're impacting all of the obvious in terms of transmission and immune evasion, which affects the case load, which in turn affects the chances of long COVID. It's no more and no less than that.

Thank you very much. We could talk forever about research, because it's endlessly fascinating, but I just wish you power to your elbow, because we're relying on you guys to help guide us on the way forward. So, thank you, both, very much.

Just a final point from me, from the Chair. We're doing this short review with the idea of having some recommendations for Government. From your position—I'll give you one each; your main recommendation to Government, both Wales and UK, to sort out long COVID. Dr Maxwell first.

To better understand the different patterns.

Okay. Professor Altmann.

I'm an immunologist, so what would I say? Enough research to give us some proper biomarkers, diagnostics and therapeutics, and make people better.

Lynne Neagle.

Sorry, Dai. I just wanted to ask if there was anything to flag with the committee on long COVID in children. Because, obviously, we know that children aren't very adversely affected by COVID infection initially. Is there any evidence emerging that they could be susceptible to long COVID?

There are a number of studies. There's an Italian study, and then there's a study, just out this morning, that Long Covid Kids, the support group, did with the authors of the Italian study. Again, neither of them is large enough to draw definitive statements about prevalence, but they are large enough to say it exists. And the ONS showed the figures that, actually, were quoted earlier, and are in my paper, about how many children have ongoing symptoms at five weeks. The big unknown for both children and adults is how long does it last. You can say, 'This many people have had it', but some people have it and it spontaneously resolves by 12 weeks without any treatment at all, and some people are now into their second year of it. We don't understand how long people have it.

Can I just add one thing to that? I think, in terms of policy implications, that's been one of the most important questions of the morning, because my answer to your question would be that the answer is to never let our guard down and become complacent about spread or percolation of asymptomatic disease in schools on the grounds that it doesn't matter because children don't go to hospital. Children do get long COVID, and the answer to your question is to keep the bar very, very high, and keep mitigations in place, and really watch what's happening in schools.

Thank you.

Thank you, Chair, and thank you to all of you for coming today and for your written evidence. I know many of you, actually, really well, because we've done a lot of talking on this subject, but this is our chance to take the evidence from you formally. Also, I just want to put on record my thanks to all of the people that you represent who've just walked the further miles for us all in this last year and a half, and I'd be grateful if you would pass on those thanks and best wishes.

We've been hearing an awful lot of evidence that there's a significant non-understanding of long COVID and the extra help and support that people are going to require. Because of that, do you reflect that? Have you seen that increase in workload? I only have two questions, so, actually, I'm going to roll them up together. Following on from that, if you have seen these changes, how has that reflected in your discussions with Government in taking part in any planning and policy meetings with local health boards or with clusters about getting your involvement and the involvement of your practitioners in what we may need to do for long COVID?

There we are. We'll go in turn then, with Mair Hopkin to start.

Thank you very much. Long COVID is something that we didn't know anything about a year ago. We still don't really understand what it is. It's a variety of symptoms that affect different people in different ways, and it varies over time, as well, so somebody may be very affected one day and unaffected another day, and that's quite difficult, especially for people like employers, to understand, that people may be able to function one day and not function another.

The Royal College of GPs has had discussions with the chief medical officer about the provision of care across different health boards. I think most of the health boards now have some self-help care available, and it varies from health board to health board how much extra help GPs can get in terms of getting special investigations and further management for their patients.

I think people are starting to understand about long COVID, and more people realise that the symptoms that they've got after having COVID are something that's being recognised, and so there are more people coming forward. There are probably still a lot of people who either came forward at the beginning and were—I don't like to say pooh-poohed—not given the due consideration that they should have been given in the beginning because we didn't understand it, and people were very busy. We were trying not to see patients physically in the surgery and to do a lot of online and telephone consultations, so I guess there are some people who were told to go away and get on with things, and they may not have come back. And that does concern me, that if we've got people who weren't listened to in the beginning, they need to be listened to now. 

Good. Diolch yn fawr. Dai Davies next. We've a screen full of Dais, particularly if David Rees comes back in. But, anyway, Dai Davies. 

We've had a lot of conversations with the chief allied health professions officer in relation to the rehab pathways. Our therapists are trying to work out how they meet that need through the existing rehab pathways. I know we talk about this quite a bit, but people with long COVID syndrome are getting the same type of response that people with chronic fatigue syndrome, ME and Parkinson's had before the pandemic. I think this pandemic has really highlighted the shortfall of timely rehabilitation in our system. It's just magnified that, to be perfectly honest. So, we've got a number of different examples where OTs and other AHPs have worked into a COVID pathway, but it's in the existing rehab pathways, it's not additional. I know Cardiff and Vale, Cwm Taf and Swansea Bay are developing systems, but, ultimately, we want people to have timely rehab in primary care. It fits in with 'A Healthier Wales'. So, that's where we think people with COVID should be seen, as well as everyone else who needs rehabilitation.  

Calum Higgins next. 

Diolch, Cadeirydd. I agree with the comments just prior to me, and I think physiotherapists would say the same as what has been said already. The one thing I'd like to highlight, really, is the issue of long COVID patients and identifying who that cohort are and how large that cohort of patients is. Very much as Mair said earlier, there have been issues around people presenting, and they may not have even known they had COVID due to not getting a test in the first part of the pandemic. So, now they're presenting with longer term fatigue issues, or issues that may be associated with other conditions, and clinicians are having to go through a process of elimination to find out what symptoms relate to a condition and eliminate everything else until they come to long COVID. And we're seeing that as a delay to diagnose the real issues. That then means that people are maybe not getting the timely rehab that we would want them to receive, and so we're really pushing the importance of rehab services in general—that if people do have these symptoms that could be associated with any number of conditions, they can access rehab services and not necessarily be dependent on COVID being the indicator for that. So, it is important about getting services back up and running to some sort of normality so that people don't see being labelled as a non-COVID patient or a long COVID patient being the key to accessing those services.

And thank you for your kind words about our workforce as well. I think people are working hard and desperate to get their services back to normality so that they can deal with the whole range of issues that have come out of the pandemic, not just specifically long COVID. 

Pippa Cotterill. 

Thank you. Patients who've had COVID are presenting with a range of difficulties that speech and language therapists can support them with. So, I'm particularly thinking about swallowing difficulties, because the muscles for swallowing might have been affected by treatment; they might have voice problems because the vocal chords might have been affected by intervention, but also that being an initial symptom for 26 per cent of cases in some studies; and also there are communication difficulties that they are suffering with. So, again, they might be following on from the cognitive deficits from COVID, but also, as Calum and Dai have said, those patients who have had those difficulties might not have come forward during this time, but also they might have been receiving treatment that might have stopped for any number of reasons. So, those communication difficulties might be difficulty finding the right words, difficulty in understanding conversation, which would lead to a reduction in them starting conversations, and obviously that's got a huge impact on people's well-being and supporting them across things. 

And I think what speech and language therapists are seeing—and, Angela, this is that increased volume of demand on the speech and language therapy service—is that where there are multiple areas of difficulties being experienced by patients, the impact is likely to be multiplied, resulting in a greater risk to their well-being. Absolutely, we've been in conversations, as Dai said, with the chief allied health professions officer and, yes, making sure that our services are involved in that work as well.

Thank you for that, but I did pick up a couple of words like 'we're pushing', 'we're asking'. There's a slight sense that you're kind of pushing. Do you feel that there is a commonality being pulled together on the way forward between Welsh Government and NHS Wales, together sort of saying, 'Yes, here's our common database. These are the common things we're beginning to see, and this is what we need'. Is that sort of unification happening, or is it still all the different pieces still saying, 'We ought to do it, we ought to do it, but it's not quite in place yet'? Because it's a recommendation that we can very easily make if you felt that we needed to give it a bit of welly.

Calum, do you want to kick off this time?

Yes, diolch, Cadeirydd. I think that is a very good question. We've had a really good working relationship with Welsh Government and the health boards throughout this pandemic, and the guidance has been very clear as to what has been expected to be delivered from health boards. The Welsh Government have linked up and tried to create that unified voice on rehab services. The quarterly plans were very useful last year. The Q4 plans said rehab services were essential to any recovery process, so we welcomed that.

The next step is making sure that's delivered in reality, and that will vary based on local circumstances everywhere, as is natural. But we've been in conversation with Welsh Government and the chief allied health professions officer to continue that dialogue, and I think I'd say it is going well, and plans are being drafted and put in place, to see what happens next constantly. So, it's a matter of keeping the dialogue going and we welcome any recommendation that encourages that.

Good. Mair, we're talking recommendations here. What would you like us to write?

Better communications, because at times it's been difficult to find out what's going on, and especially as it's been devolved to a health board level, then you have to communicate with each of the health boards to find out exactly what's going on in your area, and I think sometimes the communications have been a little bit slow getting back to general practice, and we need something that's joined together and is available locally for patients. We don't want a specialist centre, because very few patients will need that, but there'll be a great need for a multidisciplinary rehabilitation service that is accessible and easily accessible to patients, and not necessarily needing referral by their GP, either.

Right. Pippa, anything to add to that, before I come to Dai?

Yes, absolutely. I think it's important. It is an emerging field, and I think it's taking that information as well and inputting it as we get it. So, the Royal College of Speech and Language Therapists is doing a survey of members about the demands that they're seeing from long COVID, because things are coming up all the time. We've also done a survey of service users about access to services during the response, and we'll be able to provide information from that. We're now getting that outcome data for those suffering with long COVID and about what we can do about it. So, I think it's continuing to listen as well, isn't it, and building those things into the recommendations as they become available.

Dai.

The services for people who can recover from this period—. Lots of our OTs and physios and speech and language therapists are placing GP practices on transformation funds, or integrated care funds. We want those pilots to be mainstream; we don't want pilots everywhere. There's got to be a stage where Welsh Government go, 'This is the model, this is how we've got to map it up.' Lots of the services that will meet the needs are funded really short term, so we want that commitment, actually, for mainstream services.

Yes, a cracking point. Mair.

I think it's really important that whatever services we set up that we do some research, because we don't understand this condition. We don't know why some people suffer more than others, and it's really important that we find out what interventions and what support for patients work, so that we stop doing things that are ineffective.

Yes, good point.

Thank you for that, and the only other comment I'd very quickly make, Chair, is I think Mair said at the very beginning that there is just a bit of a disparity across Wales as to, perhaps, different health boards with different awareness of what's going on and what needs. If there's any guidance you'd give us there, because what we're very keen to make sure is that we don't end up with a disparity, where some people are getting everything and other people in another bit of Wales are getting absolutely nothing; we want everyone to have everything. [Laughter.]

Yes. I'm glad you outlined that, rather than everybody gets nothing. [Laughter.] Mair, do you want to elaborate on that? 

I did ask some of our members what sort of services they were getting, and very good response from Cardiff and Vale, very good response from Powys, not quite sure about north Wales. Nobody was able to come back to me and tell me what the provision was there. 

Thank you. 

Right, we'll move on. Jayne Bryant. 

Thank you, Chair, and good morning, everyone. Dr Hopkin, you've touched on the impact on GP services initially and how GPs were responding to people coming forward with long COVID in the early days, in particular. Do you think that situation has changed now with GPs, and that they're reacting in a different way and are a bit more understanding about the situation?

I would hope so. I think most GPs now are more aware of how patients are suffering. Even patients who didn't have a diagnosis of COVID confirmed often have these ongoing symptoms, and I think realising that GPs are probably the best people to co-ordinate patient care because this is something that's going to go on for a long time. Patients are going to have differing needs over different times, and I think the GPs are probably best placed to signpost services and also to make a referral to more specialised services, because some people are having very severe physical symptoms and psychological symptoms, and do need more than we can provide in community care. But I would hope that everybody is more understanding now. 

Thank you, Dr Hopkin. Do you think there's a good awareness and understanding among GPs about which signs and symptoms should prompt a referral to specialist assessment and management, and do you think that services are available for GPs to refer and signpost patients to? 

There are some NICE guidelines that were published in co-ordination with the Royal College of GPs, and they do give some indication. I don't know that all GPs are aware of what would prompt a referral. I think this is ongoing, and GPs are learning all the time. But I think for patients who have a drop in their oxygen levels or have severe tachycardia, or patients who have severe psychological symptoms, I think that would prompt a referral. It is sometimes a little difficult to know where to make that referral and who to refer to, particularly as some of the cardiovascular and respiratory symptoms can often overlap. So, is somebody dropping their oxygen because of their heart not functioning properly, or is it because their lungs are stiff or they've got problems with their lungs? So, it can be a little bit difficult and finding somebody in secondary care who has an understanding of the changes of COVID—. And again, this is evolving, so we don't know what the long-term effects on the heart, lungs and the kidneys may be. So, this is an evolving service. 

Thank you. Just finally from me, do you think there is good awareness and understanding among allied health professionals about the interventions needed to improve physical or mental health symptoms following COVID, and how best to deliver long COVID recovery and rehab services?

Who wants to start with that one? Mair, go on. 

I would hate to speak about allied professionals when I've got them here, and they can tell you themselves but, yes, I think we are all—everybody in the health service is getting a better understanding. 

It's one big happy team. Calum. 

Yes, it's very similar to what Mair said. As the picture develops, we're learning more about long COVID and rehab needed, much of which will link up to the kind of rehab that already exists for other conditions. And so again, to reiterate the point about the importance of getting those services back up and running fully can't be underestimated, really. The pathways are quite interesting in that you're automatically given rehab if you are in an ICU setting, and you're meant to access rehab through primary care if you haven't gone through that pathway. It's obviously difficult to ascertain how successful that is, because people might not be presenting. So, AHPs out in the community or in the primary care setting, I think, are really key to identifying those patients and making sure they get the right rehab for the condition. We have AHPs placed in the community working in multidisciplinary teams. We've got first-contact practitioners who are physios in primary care settings, so they can be the first point of contact for a patient. These people are very skilled in what they do and provide expertise on rehab, and a very holistic view of what a person needs, rather than a purely medical point of view. So, I think that we are learning as we go along with COVID, but AHPs, I think, are very well placed to be able to adapt the services to those needs.

Dai, do you want to amplify?

Yes. The patient is the expert. The patient is the expert on them, and when you speak to an AHP, an occupational therapist—. We enshrined in law with the Social Services and Well-being (Wales) Act 2014 having that 'what matters' conversation, and sometimes I think we miss that. So, the patient is the expert, and it's having that time for the patient to sit with a health practitioner—occupational therapist, physio, speech and language therapist—just to discuss their problems. Obviously long COVID syndrome is new, but some of the symptoms, our therapists have managed them with other conditions, especially fatigue and anxiety, so the expertise is there; it's just having a system where they can access them at the first timely moment from their GP referral that's really important. One of the big things from our members, mind you, was the IT systems and reporting and the difficulty of connecting services. It's a real, real issue, the same as what Mair was saying, about finding out where the services are and how to connect. So, that would be another recommendation. I know you must probably hear this every evidence session, but the IT system needs to be improved.

We like recommendations. Pippa, do you want to add anything?

Please, thank you. I think, speech and language therapists, we're a little bit behind colleagues in IT and physio in that primary care presence, and we really want to see that investment and that visibility of speech and language therapists within primary care, so that exactly as we've said, patients who need the services are able to access them, and we're able to be on a level footing within that multidisciplinary conversation to ensure that the patients' needs are met by the right person at the right time.

Great. Jayne.

Thank you. Thanks, Chair.

You're done, right.

Right, who wants to kick off on that one? Mair, we know your thoughts; you're basically in agreement. Pippa, let me give you the stage.

Thank you very much, Chair. Thank you. Services at the moment are doing a combination of those things. We have got some health boards across Wales that have got specialist clinics, but other services are seeing the increased demand through their out-patient services. I think the key element for us is that multidisciplinary aspect and making sure that those conversations can be held at the right time in the right place for the patient. I think, where there have been specialist clinics, that has led to investment, but we haven't necessarily seen that investment where the service has been through an increased demand in current out-patient services.

But I think, as colleagues have said, it is looking at it in the context of a wider right to rehab. These are a cohort of patients—absolutely—who need that. But it's having that presence and that multidisciplinary clinic for the wider patient group who need that rehab.

Anybody else?

Dai.

Yes, I'm going to jump on the right to rehab stuff again. Everyone deserves a right to rehab. I know that the therapists I've spoken to are quite nervous that we'll develop another silo that won't have the funding. So, it's that long-term funding for rehabilitation services on the whole that's important. So, I think that's the main message from my members.

Maybe before Calum comes in, I understand why you refer there to the right to rehab; I'm a supporter myself of the principle of right to rehab. But there's a difference, isn't there, between rehab for people who have had acute COVID and people who are looking for a diagnosis, looking to be taken seriously, looking to have diagnostic tests done on them, which is a different thing, really, in relation to long COVID. Calum, I don't know if you want to talk about that or—.

Yes. Diolch, Rhun. Rehab services were stretched anyway, and as Angela said earlier, there's some patchiness sometimes—some people are getting some things that other people aren't across Wales, and we need to learn from that, previously.

Back on Dai's point, if we're going to have specialist services, there needs to be an additional resource, because we can't detract from the resources we're going to need to deal with waiting lists and people who are managing conditions while they're waiting for certain treatments. It's going to be a huge challenge. So, I think there's a case for specialist advice and specialist help in the small number of cases that will need it, because we think the number of long COVID sufferers will probably be relatively small compared with people who'll be needing rehab services in general. But we need to have it as an additional resource and not be siloed or taking away from rehab services that should be running to deal with business as usual, which we hope, one day, we can get back to.

Yes. And the big resource investment, of course, is people, isn't it? I mean, what are the workforce implications that you might have concerns about, Dr Hopkin?

It's very difficult, isn't it, when you're pitting one person's need against another patient's need. And neurology waiting lists are horrendously long in Wales; we've got people who are waiting for diagnoses of Parkinson's disease and waiting for diagnoses of multiple sclerosis, which are treatable conditions. Are we going to take neurologists out of that service and make those waiting lists longer to meet the needs of people who've got long COVID who may have peripheral neuropathies or brain fogs or things like that? 

I think what we need to be looking at is holistic care for the patient, and what the patient needs, and I don't think that there are a huge number of patients who will need different specialists, such as respiratory physicians, cardiologists and neurologists. It's going to be the smaller number of patients who are going to need those and I think the majority will be able to be dealt with in the community. But we do need to have easy access either to advice through something like Consultant Connect, or rapid access to things like x-rays, scans and those sorts of things, so that we can either find out that there's a problem and make an appropriate referral, or that we can reassure patients that there is nothing on their investigations and that rehabilitation is what they need.

Yes. And also—and this came up a lot in our earlier evidence session this morning—it's not just about making sure that you have access to x-rays or that you have access to cardiology expertise; it's building up a body of knowledge and expertise that there are links between all of these things and that, if a patient presents with one symptom, that might be related to another symptom. And that's where creating a multidisciplinary team, a specialist team, is important. I can see a couple of you nodding—any comments on that? Pippa.

Yes, thank you. We are looking in different ways at revising what might be traditional pathways in that with our colleagues across health. So, thinking particularly about some of those patients who've got voice difficulties, which also may be from the use of Zoom. The use of Zoom increases vocal volume, so there's a high demand being placed on speech and language therapists from people who haven't had COVID, but due to the response to COVID, they've had to—they're looking for that. And we've been working with colleagues in ENT and looking at how we can revise some of those traditional pathways, so, where maybe a speech and language therapist sees the patient first and provides information, and then they can lead on for them to go to have a consultation with ENT. So, yes, we're absolutely working to look at those, to build those links, so that it is truly multi-disciplinary, and also revising some of the traditional pathways.

Okay. Thank you. Quick question on inconsistency, currently, of care for people with long COVID. Is the development of a Wales community pathway, as we're seeing, delivering consistency or showing signs of a promise of delivering consistency across Wales?

I think it's a bit difficult, because each health board has got its own pathway, and that's one of the difficulties, that we seem to be very good at setting up things in Wales, but not very good at disseminating best practice. And I think that's really one of the things that we should be doing. And just thinking of that, one of my other roles is with the Academy of Medical Royal Colleges Wales, and I wonder if this is something that the Government would like the Academy to help on to build up a body of expertise amongst the physicians and the surgeons.

That sounds like a recommendation there. Good. Thank you, Mair. Calum, do you want to add anything?

Yes. I think I'll agree with what Mair said there. Health boards have all got individual pathway plans, which all look very similar, and we've had sight of them in professional bodies. We can contrast and compare them, and it's difficult to know which one's best, or which one's doing best, without having data to back that up and seeing that followed through. The COVID data has been developing on a long—. Only recently we've been able to code people in primary care to say they've got it, and that's following through then in terms of outcome data. So, I think having an all-Wales look at that would be beneficial to be able to see where it's gone well, which pathways work best, and to be able to—. The health boards will be able to work together then to deliver the best pathways, from having had slightly different ones across Wales, to a more streamlined approach. I think that would be beneficial.

And one last question, which I think—

Hang on, Rhun, Dai is—

Sorry.

In relation to pathways and frameworks, what we get with some of the other frameworks is a new logical delivery plan, and the—[Inaudible.]—is the power behind them. There are lots of frustrations when we do these plans that it's really good, the plan is there, and then there's no input for those aims to be implemented. So, I think, if we are going to look at an all-Wales plan, it needs to have some power and governance behind it.

A final quick one—I think to Dr Hopkin. Some people have suggested that there might be lessons that we can learn for the treatment and recognition of long COVID from chronic fatigue syndrome and the myalgic encephalomyelitis community, and lessons that have been learned there. Do you see any parallels and any useful correlations?

Some of the symptoms are overlapping, in terms of things like fatigue, muscle pains, sleep disturbances, some of the psychological aspects of dealing with a long-term debilitating condition. But long COVID has probably got some unique aspects to it. You don't get many people with ME who have the respiratory and cardiovascular symptoms that you get with long COVID. So, I think, as has been said, if you need rehabilitation, does it really matter what caused you to need rehabilitation? Isn't it that you've got a need and that need should be met?

Thanks, Chair. I wanted to ask Dai Davies about self-management pathways, and whether you think that that would help with the kinds of pressures you've described on rehabilitation services, and if there is any sign of those clear pathways being developed for self-management.

Yes, the pathways in Cardiff and Swansea and Cwm Taf really talk about a tiered approach, where self-management is an important aspect. So, there's obviously the long COVID recovery app that people can use. We have published fatigue guidelines that I know a lot of GPs have used as well. And it's really important that we get to people straight away, because, if we can get them at that self-management stage, then maybe then they won't have to come in and have that sort of expensive, long-term rehab. So, the directors of therapies and lots of the AHPs throughout Wales have developed this long COVID app, so we encourage people to use that. We encourage people to use the Royal College's fatigue management guidelines that we know GPs have used. So, it's that timely rehab, and timely rehab could be a discussion with an AHP and then just some self-help guidelines, to be perfectly honest. It's just that they need to be seen as soon as possible for self-help to work, because that's the problem: if they're not in the system, and then you see them three or four months later, then they'll need some physical intervention. So, it's really important, the self-help, and people using and knowing about the COVID recovery app and the different facilities, again, and information, are so important.

Calum, you indicated.

Yes, just to reiterate some of what Dai said, that self-management is going to be key to dealing with the sheer numbers of people who will be either waiting for some procedure or recovering from COVID. It's going to be a key aspect of any recovery plan for the NHS, and access to those self-management resources, I think, would be the issue, in terms of ensuring that people know they exist, but also it's always important with this kind of thing to mention the people who don't have the digital skills to be able to just get it online. So, we need to, as well as getting it out there to the people who can use it, ensure that we catch everybody who may not necessarily have those skills to find it on their own or to use an app straight away without some help. We've had, throughout the pandemic, stories from our members—and I think all the AHP professional bodies would say the same—trying to help people get on an iPad and work their way through doing some self-management or just even to have a video call with the clinician. So, there's a lot to do around, if we are going down the self-management route, making sure the access issues are resolved.

My second question was about the app, really, and how fit for purpose you think it is—if there's anything you think should be done differently and to ask whether you're all recommending it to your patients.

Yes, can I come in there? Absolutely. Speech and language therapists are recommending and signposting to that. And patients are finding it useful, as well as support groups, because they're reassured that they're not the only ones suffering from these symptoms, but what it does need to make sure that it has is that signposting to services that they can access themselves directly, and it should never ever be considered as a substitute for specific interventions and rehabilitation that they need from the person that they need when they need it.

Mair, some patients are trapped in the 1960s, well, like some politicians.

Well, it's like everything, isn't it? Those who are health literate and have access to the internet can get what they want, and those for whom maybe English or Welsh is not their first language or they've got learning difficulties or they've got poor internet access—they're the ones who are going to be left behind, and we really need to make sure that what we provide is inclusive and includes all our populations. I think it is important that we do get this early intervention, otherwise behaviours become ingrained people feel more unwell themselves. And it's also important that people know when to seek further help, when they should see a health professional. So, it's important to have those conversations with patients.

Good. Dai, do you want to add something and then we'll come on to Calum?

No, it's all been added. Our OTs were quite heavily involved in the development of the app as well, and all the issues that people have talked about, about access and language, are very important, yes.

I'd just agree with Dai—we had physiotherapists and OTs and members of every profession on the taskforce that put together the app, so it is being recommended. I think the professional bodies all have their additional resources as well on their own websites, which some members refer to. There's a whole wealth of stuff out there, which sometimes can be overwhelming and patients just want to know which one, really, is the best, which one they should access. I think that's just a conversation to be had as early as possible with an expert in that area, AHP or GP or anybody.

Great. Lynne.

Thank you, Chair.