Long Covid in Adults

Experiences of long Covid clinics and other specialist services for Long Covid

This page covers:

  • The availability of Long Covid clinics
  • Getting referred to Long Covid clinics
  • Experiences of attending Long Covid clinics
  • Other specialist services for Long Covid

The availability of Long Covid clinics

Many of the people that we interviewed said that Long Covid clinics should be available to everyone with Long Covid in all parts of the UK. They thought that people with Long Covid symptoms should be able to go to a service which includes a range of specialists. One of the people we interviewed, who was a doctor herself, thought that this should include specialists in neurology, cardiology, respiratory medicine, physiotherapy, occupational therapy, and psychology.

Jennifer was using private healthcare services to create her own version of a Long Covid clinic because there were no long Covid clinics in her area.

Jennifer was using private healthcare services to create her own version of a Long Covid clinic because there were no long Covid clinics in her area.

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And am I right that most of the sort of, healthcare professionals that you’ve seen have been through kind of private services rather than the NHS?

Yes.

Or is…? Yes.

Yeah. There’s, now there’s some clinics in England, they’ve got some Long Covid clinics, and I think from what I’ve seen on Facebook groups that are UK wide there’s quite a mixed experience within those clinics. They are not all what they would like them to be, but there are a few that are really good. You’ve got the multidisciplinary folk like respiratory, cardio, cardiologists and physios and things. But in Scotland we don’t have any and there doesn’t seem to be any real plan for them. They seem to think that we can use the GPs and the existing services. But none of us see how that will work because at the moment there’s a very different experience with different GPs, some GPs have not been as supportive as you might expect; other GPs, like mine, have been great.

 

But they’ve got nothing to do for me, but they’ve been helpful if they can. and then you have to wait a long time to see the specialist. So, it’s kind of well, we don’t really see how this is going to work unless they have an awful lot of money they’re going to put into more specialists or something. I don’t know. It might come out in this year. But certainly, there’s nothing.

So, we have had to either have nothing or find it ourselves. So, my GP when I was telling her the people I was seeing, you said, “You’re basically making your own little Covid clinic that you would, because you’re seeing the people that you would see if you went to the Covid clinic in London where there’s a really good one.” And the [name of hospital] have set up these Long Covid rehab programmes, and they’re free, at the moment anyway, I don’t know what their plans are, but they’re free. And they are a rehab PT type person and, again it’s more about getting back to some strength, it’s…but it’s a good setup. And it’s not, instead of a clinic though because it’s not…there’s no medical people involved; it’s just to try and help you build up some strength so that you, as you heal you can do a bit more without setting yourself back. It’s kind of that you’ve got to do something to help yourself get some strength. And that’s on Zoom just now. And then in a few weeks’ time it’ll be in the gyms and there’ll be a bit more exercise going on. But that’s all we’ve got.

So, most people in the group, have managed to either get private or they’re just struggling along without anything really. It’s just very sad to be honest.

So, I would say yeah, we need the GP as first point of contact to be, even if it’s just one GP in the practice, like I found one GP, but you just need someone that they can say, "well if it’s Long Covid speak to them” and they’ll know about it. And then yes, we need a clinic or some sort of central hub that you can go to, and they can assess you and say well, like for me it’s my heart, so you go and see the cardiologist; for someone else it’s their lungs or their breathing isn’t right they can go and see the respiratory guy. And then they’ve got people to help you with those things. So, mainly that is physios, occupational therapists, maybe like diet, nutrition, if there’s factors involved with that, like with anti-inflammatory or, like as I say if people are anxious and things there would be counselling and these things. So, access to the people that can help you. And not everyone will need all of them.

But, even if they’re just available to go to them or have to be at that central place, but even if they’re just there to be referred to, there needs to be some sort of central decision maker. Because if the GP is just sending you to the normal referral thing there’s no fast track, there’s no nothing, you know there’s no process, so you’re just in the queue with all the other people. So, that person isn’t necessarily going to know about Long Covid, because it is different. Like I say, I don’t have a heart problem, but I’ve got heart problems from my heart rate, but my heart’s fine. So, it isn’t actually affecting my heart; it’s inflammation and it’s my nervous system. So, it is a…it’s difficult.

But I think that’s what we would like.

Grayson said it is important that people with Long Covid were not left to “fend for themselves”. He thought hospitals and GPs should have special Long Covid clinics.

Grayson said it is important that people with Long Covid were not left to “fend for themselves”. He thought hospitals and GPs should have special Long Covid clinics.

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Is there anything that you’ve sort of noticed about the way the current healthcare system is operating that you think could be improved or needs to change specifically in response to caring for and treating people who’ve got ongoing symptoms?

Yeah, I think it is so widespread that I think it does justify creating some specialist services for them. Because it turns up in slightly different forms and we’re…you know, we’re going to need to do research, we’re going to need to look at drug treatments, we’re going to need to look at finding a way of reliably, if such a thing is possible, reliably sifting out of things that people like me might think are Long Covid and actually they’re not, they’re this thing over there, so let’s focus on things that we can track it back, we can sequence it back to something that happened during Covid. And…and I think, you know, both hospitals and primary care need to think about having, you know, either clinics or services that are specifically about that.

Because there’s going to be…there are so many people coming in under that umbrella, you know, they need to think about that. And…and they need to…particularly in primary care, where for a lot of people it’s probably just reassuring them and monitoring them, they need to do a bit of that, not just make people leave… they’re left to fend for themselves… 

Well, that’s Covid, we don’t really understand that. That…give it time, it might clear up. 

Which is sort of been one level of response, or hang on, I can’t nail this down with a diagnosis and a drug that I then have to give you, so either it doesn’t exist or it must be something else, you know? Let’s…let’s be free enough to say you have to be professionally curious about this, it’s something we don’t know a lot about, we probably need to construct some services trying…to try and understand it better and to cope with the number of people who’ve got it.

Getting referred to Long Covid clinics

Some people we spoke to lived in areas where Long Covid clinics had been set up. Often people had been referred by their GP, but a few had been able to self-refer. In some cases people were told they needed to have had their symptoms for at least 12 weeks to be referred and waiting lists for Long Covid clinics could be very long. For example, Shaista’s GP had referred her in January but when she was interviewed in June, she was still waiting for an appointment.

After having symptoms for 12 weeks, Ellen was able to self-refer to a Long Covid clinic in her area. It had a very long waiting list and she wondered whether she would ever get an appointment.

After having symptoms for 12 weeks, Ellen was able to self-refer to a Long Covid clinic in her area. It had a very long waiting list and she wondered whether she would ever get an appointment.

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I had to pace myself. Now, that was very, very hard, and that was another question that I did put at one of my HR meetings was, the GP had suggested I self-refer to…there was a clinic in…not my local hospital, but one just a bit further away, that they do some sort of Covid clinic, and in [area] it’s called [name of service]. So, I did try and investigate all that, and she also said…oh no, she gave me the number for that, it was a self-referral, but you couldn’t actually put your name down for it until you were twelve weeks into it. So, I did raise it with my HR department, because I said, look, the pacing side of things is really difficult, and they couldn’t chase up the referral either, you know, you still had to wait ‘til the twelve weeks. So once that came, I put myself on the waiting list, and I’m still on the waiting list. And I’ve raised that again with HR and they can’t chase it any further. They said, yeah, there is a big waiting list and they’re trying to work on that, but still nothing. Since heard somebody else on the Facebook group that I’m on, they’ve been waiting, same area in…since June last year. There’s no chance I’ll get seen, hopefully I’ll be, you know, well, but that was another sort of cry for help in a way, because I’m not used to being still and not used to doing nothing, what little bits of energy I had, I wanted to be able to do something.
 

 


 
People also told us about having to chase up their referral because they had been waiting for several months for an appointment. When people got their appointments, some told us about breakdowns in communication which meant their first appointment didn’t go ahead. Golda waited three months for an appointment and, after asking about the wait, was given a time for a telephone consultation. When no one called her at the appointment time, she felt really stressed - “I literally almost had a nervous breakdown” – and then very angry to learn that “patient no-show” had been added to her records.
 

Golda said she had to “push her way in” to a Long Covid clinic and the process had a negative impact on her mental health.

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Golda said she had to “push her way in” to a Long Covid clinic and the process had a negative impact on her mental health.

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It’s been an 11-month journey and there’s so much, okay there’s my story of the Long Covid clinic which taught me that unless you advocate for yourself, you’re stuck in a rut and you’re out of the system. I don’t like talking badly about people or anything, I think the NHS is wonderful. I think that everybody is just trying to do the best they can, and I think that wherever you are in the world it’s all the same, you know, it’s swings and roundabouts and that’s my preface to what I’m going to say now. But basically, my GP referred me to the Long Covid clinic in February and they say there’s a six-week waiting list.
 
This is from July and, first of all, the only way I got into the clinic was to literally push my way in, advocate for myself. Then there was this whole thing, I was so upset, ‘patient no show.’ It said no show. Suddenly the appointment came back on and it said, ‘patient no show.’ I was so mad, I was so, so mad and like they’re just trying to cover their backs on the thing of somebody else’s mental health.

 

Razia’s Long Covid clinic referral had not been a smooth process and due to misunderstandings in communication she missed her first assessment appointment.

Razia’s Long Covid clinic referral had not been a smooth process and due to misunderstandings in communication she missed her first assessment appointment.

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In sort of March, they said, “We will do a referral to the Long Covid clinic.” That came through in June and again, it’s not going to be face to face. It’s going to be, it was a phone call, but it was a very brief phone call because some of the logistics, the referral, again the surgery wasn’t really a hundred percent sure what they needed to be doing and I think certain staff members, some people are struggling to get into work. So, the wrong referral was made so I’m now waiting for the actual appointment. Still haven’t had the initial assessment for Long Covid.
 
And then I got a phone call to say, your appointment will be on this day. We will send you a link, like you do, like yourself, and the doctor will do a video call with you. I said, “Fine.” I didn’t get that email. I didn’t get that email and so, in my head, I’m thinking, well, doesn’t have to be a video call. Maybe they might just phone me. Maybe I misunderstood, you know. So come the day, my husband has taken the morning off work and he’s at home with the kids so I can have this one-hour consultation. Come ten o’clock, nothing. I’m checking my emails. I checked my messages. My husband checked for me, nothing. And then about, so I carried on. I thought, surely, they’ll call me, you know. They’ll call me with the chap. Two and a half hours later I get a phone call saying, “We waited for you on the video call. You missed your appointment.” I was like, and you thought of ringing me two and a half…Why not ring me during my appointment and we could have had the chat? And I said, “I don’t have the email.” And she went, “Right.” So, she was like, “What’s your email address?” And she must have checked the outbox or something, I don’t know, items. She said, “I’ll get my secretary to do an urgent rebooking.” This was in June.
 
You still haven’t had it. Oh, I’m so sorry. Have you chased them up?
 
I don’t have a number to chase.
 
Oh really.
 
And I did speak to my doctor again. I said, “Look.” I spoke to her about something else and she said, “Is there anything else?” And I said, “I’m still waiting.” And she went, “Well, you know.” Nothing [laughs].

 

The Long Covid clinic called Faatimah when she was asleep and didn’t leave a number to call back. She hoped to rearrange an appointment but doubted the clinic would be able to tell her anything new about managing her fatigue.

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The Long Covid clinic called Faatimah when she was asleep and didn’t leave a number to call back. She hoped to rearrange an appointment but doubted the clinic would be able to tell her anything new about managing her fatigue.

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Would it be possible for you to tell me a wee bit more about…you said you’ve been referred to a Long Covid clinic but that that’s not really come to anything…?
 
It’s not been a successful one because of us not really getting into contact successfully [laughs]. I think like last year…I forgot what exactly happened…I got referred…first of all, the waiting time is, like, three months. Obviously by the time the…coming to call me, my mind is just off it. Something will happen, like my phone is not with me and it’s a telephone appointment or they’ll call me at like 11am or 1…and for me, that’s, like, struggle time to wake up, and so I like miss their call, and also you can’t call them back because there’s a hidden number. And I think the clinic closes at, like, four, and that’s basically the time I become most…I start my day and, yeah, so I basically didn’t get effective communication and also I had to leave to go back to [city] and then had to reschedule a whole new appointment and so, yeah, now I’m just leaving, so I’m hoping to get referred to a new clinic in [city]. I’m also not that…I mean, sure, I do want to get referred to the clinic but I also don’t a hundred per cent…I’m not that bothered about it, because I also know that the clinic are not really going to do anything [laughs]. They help you to pace yourself and learn how to manage your symptoms, but I’ve just been forced to do that myself anyway so…
 
And I’m interested to know where you get that…do you know other people that have gone to Long Covid clinics, or what’s given that impression?
 
Yes, my teacher said that. I mean, my teacher? Sorry, doctor said that. You know, it’s more focusing on that, and because I obviously…I watched, like, a couple of videos, I think, like there’s just, like, NHS promo videos or something, specific trusts have videos up or something and it’s because mainly my symptoms are not the type that can really do anything except apparently they come up with a plan thing, you get, like, different people, like you get occupational psychologists or this, a doctor and they can all come together and help create a plan for you and stuff, which I see the value in but at the same time, I could probably just do that myself, because I have been forced to do it, you know [laughs]? And I guess just seeing some people’s path before Long Covid, just seeing other ME/CFS experiences with clinics is just, like, I’m not really that optimistic.
 
So, it’s not something that you’re actively sort of chasing up?
 
No, I mean, when I go to [city], at some point I’ll switch doctors and then I’ll get there, but there’s no miracle cure to it, so they just provide professional guidance – which of course is valuable but there’s just nothing they can tell me, like, I know the NHS advice and the leaflets about Long Covid are just ‘stop, rest, pace,’ and I’ve done that [laughs].

 


 
Access to Long Covid clinics can depend on where you live. Despite being referred to a clinic by several health professionals, Vonnie said she’d had to write to her MP before she got an appointment. She felt that there were others who had “only been ill a few months [and] they’ve got themselves onto a Long Covid clinic” and she wondered if this “was a postcode thing.” Poppy said it was “frustrating” that she lived so close to the “best Long Covid clinic anywhere” but couldn’t be referred to it because she lived “a few feet the wrong side” of the city. 

A doctor speaks - Helen Salisbury discusses why people might like to attend a Long Covid clinic.

A doctor speaks - Helen Salisbury discusses why people might like to attend a Long Covid clinic.

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So not all patients benefit from Long Covid clinics. An awful lot don’t benefit as they never even get there. When patients do go to Long Covid clinics some of them have a really positive experience, and some of them find that they didn’t really gain anything.

But it is very difficult to know in advance who is going to benefit from a Long Covid clinic. There are somethings that are particularly useful, and I would say maybe top of that is respiratory physio. Lots of people with Long Covid find that their breathing just doesn’t come naturally anymore. Sounds a bit strange because we usually don’t think about our breathing at all, but actually after Covid some patients have to learn to breathe, and respiratory physios really help with that. But there are lots of other people lots of other professionals who are attached to Long Covid clinics there are people who will help with voice, there are people who will help with mental health there are people who will help with physical strength and all of these things are really important in recovery.

The other reason why I think its important for patients to press for a referral and for health professionals to offer referrals to these clinics is that we need to learn more about Long Covid. And unless we have a full picture and unless everybody is counted, we won’t have a clear idea of what the symptoms are, and we will have less opportunity to try new treatments. So, a Long Covid clinic is the best place for being offered possible new treatments for Long Covid.

Experiences of attending Long Covid clinics

We heard from people about a mixture of experiences of going to Long Covid clinics. Richard said his expectations had been low: “I didn’t see the point [and thought] this is a waste of time.” But after he had been to the Long Covid clinic, he described himself as being “really quite impressed” by the physiotherapist and occupational therapist he saw. He said they “knew a lot about the research.”
 
We spoke to people who found their appointments useful. Xanthe said the health professionals at her clinic were “very nice, very understanding and have not gas-lit me at all.” Kate said that a “good outcome” of her Long Covid clinic appointment was meeting four other people with Long Covid. She had been keeping in touch with them online every week. People appreciated having access to a range of specialised tests through the clinic. Sara said, “They did a proper lung function… at least they managed to find… something measurable, [and the lung specialist] found me the right inhaler.” Some were referred on to other services by the Long Covid clinic. Others, like Sarah below, had not been referred anywhere else and had not had any more follow-up after an initial telephone consultation.
 

Anthony had 3 or 4 telephone consultations with a Long Covid clinic. He described these as “really helpful” because they introduced him to ways of coping with the condition by managing his energy levels.

Anthony had 3 or 4 telephone consultations with a Long Covid clinic. He described these as “really helpful” because they introduced him to ways of coping with the condition by managing his energy levels.

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As you say, my GP referred me after I’d had a number of consultations last year about the condition before we understood what it was and concluded that it might well be Long Covid. So, they referred me to the Long Covid clinic who contacted me right at the beginning of this year. And it was a phone call, and it was the people that had been, who were working in the Long Covid clinic were mostly…or the person that contacted me anyway was a respiratory physiologist. And because at the beginning most of the issues with Covid and Long Covid were thought to be centred around respiratory difficulties. And so one of the first…so this person called me up and we had a conversation on the phone and I said, “Well look, I'm…” and, you know, they explained that they were respiratory physiologist that…and I said, “Well look, I haven't, as far as I'm aware, had any specific respiratory illness, you know, kind of, do I qualify?” And you know, “I'm nevertheless sure there is a very long-term condition here, but it, kind of, doesn’t necessarily seem to, kind of, fit in with, I don’t know, where you’re coming from, kind of thing.” Anyway, they were very reassuring about that. They said, “Well actually…,” I think at that stage they’d said, “You know, about fifty per cent of people that have been referred to us haven't had and don’t have severe or indeed any specific respiratory conditions.” So, they were taking us all on, which was great.
 
And it was at that time that the person that I spoke to, very helpfully mentioned ways in which I could actually approach and potentially manage the condition. And…which I hadn’t got, wasn’t aware of before. And they mentioned that, you know, the condition involves a very, very low amount of energy which appears to have lots of similarities with chronic fatigue syndrome and ME. And from that experience, the best way to…one of the best ways of at least dealing with it is to manage your energy levels, so I was introduced to this concept of very, very, very carefully managing my energy levels. So that was really helpful. So, I think that was…so I had about three or four conversations on the phone with them over a period of a couple of weeks.
 

 

After an initial triage call with the Long Covid clinic, Fiona B was then referred to a clinic to help her deal with brain fog. At the time of interview, she was waiting for an appointment with them.

After an initial triage call with the Long Covid clinic, Fiona B was then referred to a clinic to help her deal with brain fog. At the time of interview, she was waiting for an appointment with them.

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There’s like the Long Covid clinic, interestingly, they were great, they came on the phone, but the system’s slow, and they mean well [laughs]. These systems that are in place mean well, but I haven’t seen anybody yet [laughs]. It’s been January [laughs]. And so that’s…

So, three months on, you’ve had some contact with them by phone, but not actually been able to attend the clinic yet, is that right?

Oh yeah. I mean, where I’ve been put through to now is a cognitive support clinic. Which is tied up here in [city], and I think it’s [name]. There’s something like that, and they got in touch and said…I got a letter, but there’s a waiting…I’m just waiting.

I think it was three or four weeks before they phoned, and it was a phone call, and that was a bit like a…I think it’s like classed as a triage. So they go through your symptoms, how long you’ve had them, and then they again will tell you whether you’ve got Long Covid, so you get about three diagnoses by this point [laughs]. And then they work out what’s the best treatment plan for you, so it’s what is your worst symptom, so very much was the cognitive. The worry about that as well, so they put that in place for that to be done, but as I say, nothing as yet has come through, although I have had a letter to say that I’m in the system.

 

Sarah described her first telephone consultation with the Long Covid clinic specialist nurse as cathartic. However, there was no follow-up appointment or referrals and her GP suggested that chasing this up wouldn’t be worthwhile.

Sarah described her first telephone consultation with the Long Covid clinic specialist nurse as cathartic. However, there was no follow-up appointment or referrals and her GP suggested that chasing this up wouldn’t be worthwhile.

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Yeah, I mean with the Long Covid clinic I wasn’t really sure what to expect from that, but it turned out to be I’ve just literally had one forty-five-minute phone call from I think it was a specialist nurse at the Long Covid clinic and the phone call was quite cathartic I suppose, I sort of talked through obviously my own list of symptoms and limitations on my life that I was experiencing. But there wasn’t from that anything further, so I think actually the nurse did say she’d follow up with another phone call four to six weeks later and I’ve never heard back and that was, you know, several months ago now. So, there wasn’t particularly anything from that.
 
And do you feel like you would want to go back to that to kind of try and chase that up or how do you feel about that?
 
So, on my last phone call with the GP I did say, I did mention that I hadn’t had any sort of follow-up from the Long Covid clinic and the GP’s advice was just to leave it, that he didn’t feel that it would necessarily be particularly useful [laughs]. I don’t know in our area, I know it’s different in different areas, isn’t it, I think, these Long Covid clinics, but I think he was indicating that perhaps in our area it wasn’t necessarily worth following it up that they, you know, with what I’m experiencing, there isn’t particularly anything else that they would be able to give me or suggest or do other than what I’m doing already.

 



Others were less positive about their experiences. Poppy said, “They’ve done the basic blood tests… but they’ve not looked any deeper.” Lucy was diagnosed with PoTS (Postural tachycardia syndrome - an abnormal increase in heart rate that occurs after sitting up or standing) through the Long Covid clinic and referred to a physiotherapist who knew very little about the condition. This left her feeling like she had little support. Lily, a doctor herself, felt the Long Covid clinic she was referred to was designed to be “as non-medical as possible” because they could not refer her to get her heart symptoms investigated. She was told “We can refer to dietician and chronic fatigue service and do some in-house rehab,” but Lily felt that wasn’t a useful service.
 

Lily felt she only got the medical conversation that she wanted from the Long Covid clinic because of her medical background and because she “pushed and pushed and pushed.”

Lily felt she only got the medical conversation that she wanted from the Long Covid clinic because of her medical background and because she “pushed and pushed and pushed.”

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And so he then rang me at 8 o’clock that evening which was yeah, I was really impressed about. And actually, looking him up, it turns out he’s also got a private Long Covid service, so I think he actually does know. And he was just so, he was exactly what you need from a Long Covid service. He’d read all the bits and pieces. He knew what was going on. He was, you know, he said, “What are the main issues now?” So, we were able to have a sensible, focused conversation about what the issues were. That we’d got, cardiology was being kind of sorted, that fatigue was still an issue but actually it wasn’t a concern if that makes sense, you know, I can understand why I’m fatigued. I don’t need to, like it’s tedious but it’s fine. And then he said, you know, “I know obviously you’re a doctor. You’ve been doing lots of reading. You’ve done all the research. Obviously so have I. We’ve been in a forum this afternoon trying to discuss what, you know, all the current evidence and what’s going to happen and at the moment, understandably there’s no NICE guidance, and so everyone is reluctant to try and prescribe the triple therapy.” And I was like, you know, “I totally get that.” And, and he was like, “But I, well I think everyone’s watching the research at the moment and I think it’s not going to be long before people are trialling it off license and actually that’s the point. So, at the moment there’s not a lot we can offer formally because we don’t have the backing, but I think it’s probably coming.”
 
And it was like, that’s exactly the conversation I wanted. To know that you guys are as on board with the research as I am. That you’re, you’d like to be doing more if we had the option but there isn’t that option at the moment. And like I see all of that, and I said, you know, “Your thought process is mine, without the overlay of ‘but I just want to get better.’” Like I can see exactly what you’re thinking and it’s what I’m thinking and it’s really reassuring that you’re thinking yes this is a medical issue. There is something physiologically going on. This is not all just…and I hate to use “just chronic fatigue” because I think there’s going to be a lot coming out in the next couple of years as a result of Long Covid that’s going to change how we look at chronic fatigue and ME and all of those bits and pieces. But I think it’s, I’m using it as a term for how it’s been, how it’s been described and dealt with up to now. So actually, and we spoke for about half an hour and came away feeling significantly better than I had done after the last phone call. And it was like that’s the service you need to offer. Like I get that our CCG haven’t commissioned direct referrals and stuff like that. And like I get that you don’t have control of that, but actually you need to. That’s really important. Why are we putting more work on the GPs? The whole point of the Long Covid clinic is to take the work away from them so that they’re not having to deal with really complex weird stuff that no one quite understands. And they shouldn’t have to write a cardiology referral when it’s very obvious that Long Covid is affecting cardiac issues. You know, it should, it needs to be more of a Long Covid coordinating care across all the different specialties, so it was incredibly positive.
 
And he was like “Look you’ve got my mobile number. I want you to text me. I want to catch up again.” So, I was like ‘Okay, crikey. Wasn’t really expecting that.’ “I’m going to-,” and he was like, “I’m going to refer you for our physio and our OT both to see you, but I want them to see you in person because I think that’s actually more important now.” And it was like, yeah actually I think you’re probably right and I’m sure there is some stuff that can be done virtually and that, you know like, if it is fatigue management, I totally understand why that’s necessary. And I’m very aware that I’m very bad at that. But actually, I think there’s a lot of other stuff that’s going on, and I think having physio input particularly would be really useful at the moment. So yeah, there you go. There’s my two sides of the Long Covid clinic with just how good it can be. But I think the only reason that I’ve got that is because I’ve pushed and pushed and pushed and been medical and known the right questions to ask and went through just feeling absolutely dreadful about it. Like, which just seems silly, so.

 

Other specialist services for Long Covid

As well as telling us about Long Covid clinics, the people we interviewed spoke about their experiences of other specialist services which had been designed or adapted to help people with Long Covid. Michelle praised a Long Covid self-management course she had gone to: “It’s like, ‘You understand Long Covid, you understand me, now you see what I’m going through,’ and they just, kind of, got it, and it was like a curtain had been lifted.” Judy had attended an existing NHS service which was accepting patients with Long Covid. She told us how this had helped her. Susan was referred by the Long Covid clinic to a rehabilitation programme. Lynne had a very negative experience when she saw a Long Covid specialist who travelled to her area to see patients. 

Judy had very positive experiences with the occupational therapist she had seen. She listened and gave practical advice and was very willing to learn.

Judy had very positive experiences with the occupational therapist she had seen. She listened and gave practical advice and was very willing to learn.

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And they have an occupational therapist and a pulmonary rehab physio so I saw, I spoke to both of those people over the ’phone so it must have been ’phone appointments they have. And that’s been really good, particularly the occupational therapist because she calls me up every month or something like that and, and you just talk through what’s happening and they talk about…she’s been teaching me about pacing and things like that. And it’s just really nice to have someone, the same person, talk to you and have enough time to talk to you. She might spend about half an hour, forty-five minutes on the ’phone with me. So that’s good because she remembers who I am and she remembers what I [laughs] told her last time. And she’s unfailingly kind and helpful and positive. So that, that’s been a really good thing.

 

And I think one of the good things about the occupational therapist there is that she’s quite happy to admit that she doesn’t know yet. That, you know, there’s lots of things that nobody knows. But she has got enough other patients with Long Covid that she’s beginning to kind of…she says that she learns a lot from them and she can listen and try and give advice to the other patients based on, on what people have told her. Or reassurance, or even just to know…well, for example, she said some people have found that the vaccinations helped them, and some people haven’t. So, you know, she…it’s not at the point where we have good clinical evidence but she’s able to kind of share other experiences.

And you indicated there that you, you appreciate the honesty about uncertainty. Could you just say a bit more about why that’s helpful or important?

I think it’s important because it’s not patronising. It’s, it’s helpful because it’s not patronising. it’s a kind of well “okay we’re going through this together what you tell me is important”. And it’s important, I think, that that honesty is accompanied by an earnest wish to help me with it and keep helping me with it. As opposed to, you know, if I went along to somebody and they went, “I don’t know. Nobody knows. See you later.” Then that would be incredibly frustrating. But I’ve always felt with the occupational therapist that she doesn’t know but she’s very willing to learn and she’s not going to abandon me halfway through.

As part of a Long Covid rehabilitation programme, Susan was in contact with an occupational therapist. She hoped that they would help her to arrange her return to work with her employers.

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As part of a Long Covid rehabilitation programme, Susan was in contact with an occupational therapist. She hoped that they would help her to arrange her return to work with her employers.

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I’m doing a Long Covid clinic rehabilitation programme. So, it’s seven weeks of the course followed by a one-to-one session. And if at the one-to-one session they feel that I’m well enough to try going back to work, they can give me an employer letter sort of tuned to exactly what I might need, any reasonable adjustments or anything like that. So, then I can then have a conversation with work, and we can then discuss what their recommendations are, what adjustments I might need, how a phased return might look. I think that’s good and so it, each week is looking at slightly different things. So, the first week was an introduction, this week we were looking at fatigue and managing fatigue and that carries on next week. And then there’s other things to look at. And then strategies given and sort of homework, in a way, so that we can try and build those strategies and techniques into our life and see how we can improve. And then when I have the review then we’ll see.
 
And who is it that’s running that rehab programme?
 
So that’s a Long Covid clinic assessment from an occupational health practitioner and she assessed as to where I was. So that was about an hour-long appointment. And then she said that I wasn’t bad enough to be referred to a fatigue clinic because that was literally for people who couldn’t get out of bed and struggled to have a shower. But I definitely needed some help. So, then she referred me on to this programme, which I had to wait a few weeks for that to start. And that’s run by an occupational health specialist in ME and chronic fatigue. And now, Long Covid.

 

Lynne was “devastated” when a consultant from a Long Covid clinic suggested her difficult respiratory symptoms were “all in her head.”

Lynne was “devastated” when a consultant from a Long Covid clinic suggested her difficult respiratory symptoms were “all in her head.”

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I also had a consultant who I was waiting to see for ages, and so happy to get to see someone who would be able to help, who told me it was psychological, that I had sort of latched onto this Long Covid name, and it was all in my head. And I thought, well I had it before it was a thing, like, I didn’t even…I was one of the first people who were saying, this isn’t going away. So that was very difficult to hear that from someone who was supposedly an expert.

And what was his specialty, what was he a consultant of?

Respiratory. And he had come up from England because he had a Long Covid clinic in England, so he was seeing Scottish patients. And that’s what he said that it was in my head, and I should take antidepressants. Which, thankfully, my GP knew me well enough to say, that’s not accurate, you know, and in her opinion, it is Long Covid and that that’s not a fair thing to say [laughs]. So, I was disappointed, because I thought he was going to solve all my problems.

That’s it when you’ve been looking forward to an appointment with somebody…

Yeah.

…and you’ve kind of latched your hopes on them, and then that would have been really hard, I think. How did that leave you feeling?

Oh, I was dreadful, I was devastated, I was just devastated.

Yeah. Sorry, sorry. Are you alright, just take a moment. It’s really hard, isn’t it, when you’ve been through all of that, and it’s just, it can be hard to talk about stuff.

Yeah.

And that must’ve been a particularly different moment, I would imagine.

Yeah. I mean, it was the way he said it, he said it was, this is what he found with, Caucasian women [laughs]. And I was furious, I was so angry that he was, you know, a professional man who would say something like that, a Caucasian women, it tends to just be psychological, and that they just need antidepressants. And I should be depressed, but I'm actually not [laughs]. I was actually psychologically, okay [getting upset].

 


 
Lily’s workplace, a hospital, had set up a rehab programme for employees but Lily felt the usefulness of this varied depending on who was running the sessions and how much they understood about Long Covid and the impact of over-exercising. Hannah’s clinic had referred her for workshops designed for people with Long Covid, but she didn’t find them helpful for a number of reasons.
 

Lily experienced an absolute crash after pushing herself too far in a physio-led rehab programme session.

Lily experienced an absolute crash after pushing herself too far in a physio-led rehab programme session.

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So the hospital bless them have been amazing and, as my employer, rather than as the hospital, have started up a Long Covid clinic for employees only which is great but also terrifying because it means there’s more, there’s a lot, there’s enough of us out there for it to be a justifiable thing to have. And they set up a rehab programme which had started, it must have been a week or two before I think, maybe it was that week actually, I think it must have been the Monday and then [husband]’s birthday was on the Thursday or the Friday, [husband]’s birthday was on the Friday and the problem was that the person who was running the clinic, one of the physios was absolutely excellent and really lovely, really sensible, had done as much reading as there is to do really on Long Covid, understood all the kind of post exertion malaise and everything and was really like “No, no, no we’re working individually like it’s a group setting but you’re going to work individually within your own goals and your own remit and like we will tailor it to you.” And to some extent she already had because the sessions were either on, I can’t remember like either Monday and Thursday or, no Monday and Friday or Tuesday and Thursday so in both of those scenarios I couldn’t do one of them and she was like, “That’s fine I’ll change it round, we’ll do a one-on-one session on the other day, it will be fine.” But then I went to the first session and I think that maybe the people who were running this session didn’t have quite the same level of understanding, at least that’s certainly how it kind of came across and so pushed a bit further than I was, I would have expected and not in a kind of, ‘You must do this’ way, but just in a kind of ‘This is what we’re doing’ way, and you kind of just do what you’re told in a class, don’t you, because that’s like how exercise classes work. And was then just so bad by like the Thursday I was back to how bad I’d been like the first week or two, like I physically couldn’t get out of bed, couldn’t eat couldn’t do anything, so absolutely ruined my husband’s birthday, poor man so yeah so that had happened so, I was trying to come out of this absolute crash [laughs].

 

Hannah felt she already knew what she was told in the Long Covid workshops but needed to keep attending so she could say “These didn’t help at all; what’s next?” Some advice wasn’t helpful because of her age.

Hannah felt she already knew what she was told in the Long Covid workshops but needed to keep attending so she could say “These didn’t help at all; what’s next?” Some advice wasn’t helpful because of her age.

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I'd rather there was some sort of solution rather than me to attend these workshops, which considering my extensive knowledge, due to like the fact that I have a neuroscience degree, being told about the stress response in the body and...so like adrenalin cortisol and stuff and it’s just like I'm so aware of all of this stuff, I'm so aware of the parasympathetic nervous system and sympathetic nervous system that it’s just like I almost feel like I know more than the person that’s explaining it to me, and then they're just telling me, “Breathe and do mindfulness.”
 
But I just feel like I need to go to them so I can go back and say, ‘These didn't help at all; what’s next?’ And the other thing about the workshops is everyone in them is a lot older than me, and it’s like they're meant to also be a place where people can relate to each other, and I can't; I don't have children, and the workshop run…a lady who was like, “Oh well,” like, “I'm sure you struggle with cooking dinner for your kids,” and I was like, “Well no, of course I don't, because I'm 21 and I don't have children,” so I just feel like it would be...it would be beneficial if there was one for people a similar age, so instead of me just listening to people and thinking, ‘I have no idea, I can't relate to that, and also everything you're telling me I already know,’ yeah.
 

 


  
Others we spoke to had attended a free but privately run gym-based programme which was developed for people with Long Covid. Maria said she saw “notable improvement” in her strength and fitness as a result of the programme and meeting other people on it had validated her experiences.
 

Ben described the trial gym programme which helped him to make progress with some of his physical symptoms. He benefitted from the one-to-one support and individualised goal setting.

Ben described the trial gym programme which helped him to make progress with some of his physical symptoms. He benefitted from the one-to-one support and individualised goal setting.

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And then how that now works is that I have a weekly check-in…I'll just get my diary up. I have a weekly check-in with what they're calling a rehab specialist and we then…through that we talk about the last week, kind of mood, food, how things are, any pains, any different kind of things going on with yourself. And then that's one to one, it's about half an hour/forty minutes every week and then I have a live class that we deliver via Zoom, which…class is kind of a loose term, so it's a group exercise that we do. And they started with really, really basic, so they were all kind of chair exercises. But then they split them into mobility, strength, and cardio and I think the initial session was probably just stretching, like we stretched for forty minutes. Now we're moving it up so we're doing a variety of exercises and that changes on a cycle of every few weeks. We increased the intensity a little bit. So, it's close to but isn't called yet a graded exercise therapy. But we are doing [inaudible], we are doing a structured team meeting of intensity of different motions. And that is done every single week. We also have a repeat of that every Wednesday, we have repeat of that via YouTube link on Friday.
 
You went…the sound went a tiny bit again then. So, you were just saying that it was building towards a kind of structured…a gradated increase in physical activity. So you were saying that every couple of weeks they're increasing the intensity of the stretching and the other exercises?
 
Yeah, so during the sessions you're given the exercise, you're given a regression, a progression, to allow you to take those options as you go through. The general trend is to increasing the movements and increasing the intensity.
 
Throughout that they're checking with you, how's everyone doing, heart rate okay, and stuff like that. It's a good structure to stick with. And then you do what's called your build your own workout, so you do your own workout as well, which incorporates some of the activities we did in the group session, but doing them yourself, what's particularly going to benefit you in what you're looking to achieve. So, the first week of it I was kind of…I was open to what's going on, open to ideas. So, feeling pretty groggy the first week, a lot of aches and pains. And slowly definitely kind of improving, there's not been any other changes, I would say, in what I'm doing other than doing this that I could attribute that to. I was able to do the first week, I think I could walk maybe a hundred metres, two hundred metres, and I was busy falling over. I was able to do…I think we set a goal of five hundred metres without my heartrate spiking. I was actually able to do four times that, I was able to walk two kilometres without it spiking. So, I think having the structure of it is really helpful. And having that one-to-one connection with somebody and setting the goals that matter for you and how we're going to get to those.

 

Lynne said the gym programme “made a big difference” to her. This was because it helped her to see improvements that were happening.

Lynne said the gym programme “made a big difference” to her. This was because it helped her to see improvements that were happening.

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Then I heard about the [gym-based rehab programme] and managed to get onto that. And that was, that made a big difference, there was a lot of focus on mental health, which was helpful. Although I've remained fairly upbeat about, you know, I’ll get better, I'm gradually getting better, which I suppose was quite helpful. But the course was great. Because, very gradually introducing little bits of exercise, setting your own pace, and just trying to see that, slowly, I was getting a tiny bit better. I think that was, mentally, very good, to be able to see tiny improvements, and gradually build up to getting a wee bit more active.
 
Yeah, yeah, generally feel…for a long time I felt like I was getting nowhere, and there was just, there was no real improvement for a long time. And then, I think through the [gym-based programme] thing, as well, picking out little things that you can see an improvement in, and it was really good, psychologically, really good, mentally, to see, actually yes, it’s getting better. And I can see that I'm making a very slow – very slow, painfully slow – progress in the right direction, most of the time. And then you’ll have a dip, but then on the other side of it, you're still back to a better place than you were maybe a few weeks before. So that’s, it’s good, it’s just painfully slow. And it’s the, does it stop at some point, and that’s it, or does it keep getting better.
 

 



Christian and Anthony were positive about taking part in a programme called Breathe which was run by the English National Opera. This programme is designed for people who are still experiencing breathlessness after having Covid.
 

Anthony benefitted from taking part in the 6-week English National Opera Breathe programme. It helped him relax and manage his breathing.

Anthony benefitted from taking part in the 6-week English National Opera Breathe programme. It helped him relax and manage his breathing.

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It was a group session. Obviously it was online. And it was all centred on breathing and relaxing and it was run by a lady who essentially trains singers how to sing. But the techniques of the, you know, opera singers, professional opera singers how to sing, but the techniques that they use, it seemed to translate very well to helping people who had particularly breathing problems, sort of, breathing relaxation problems, getting themselves in a state, that I think a lot of people with Long Covid do. I mean, as I say, I didn't specifically have those breathing problems, but in terms of the relaxation and managing your breathing to help you relax, I mean, that was really, really good. And the approach was a very novel one and a very interesting one. And the teacher was stunningly good. Really excellent.
 

 


 
You can read more here about the messages people had for health care professionals.
 

 

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