Long Covid in Adults

And the second thing, again, and from the GP perspective, I absolutely get the fact that, you know, I am not dying, and that there are more people, with more serious conditions than me that the kind of medical profession needs to give its time to. But my life has been completely turned upside down.

And the lack of support has been galling. so if there were, a way that, you know, in Scotland, we could look to replicate, you know, the concept of the Long Covid clinic, or create something that allows people with this condition to get help, rather than adding yet another thing onto the big, long list of things that GPs need to think about, then I would have thought, that has to be a better, more effective, more efficient way of supporting, kind of this condition, and, you know, sort of what I've experienced so far.

And going back to my kind of qualification about the medical context. It’s, well the Health Service is obviously quite strained, just now, Long Covid is obviously something that’s all brand new. So, I don’t, you know, I'm not casting any kind of note of complaint or anything, kind of, at my GP. My GP has been pretty useless.

That’s not, I don’t for a second think that’s their fault, you know, they’re put in a very unfortunate situation of, kind of, too much to do, and this new Long Covid thing, they don’t know what it is, and they just, you know, I'm not dying, so they don’t seem to have the time to spend with me you know, I'm aware of the Long Covid clinics that exist in England and that we don’t have the equivalent up here [Scotland], which is a real shame. so, you know, I got to see a respiratory specialist, because I pushed to see a respiratory specialist. I got to see the neurologist specialist, because I pushed to see a neurologist. My, you know, the…as I say, other than writing a, physically writing the referrals, and physically writing the sick line for me, back in September, I've had nothing from my GP. 

So no advice, no information…

Nothing at all. If, if I…

…no follow-up to see how you are…?

No, not a thing.

So, without your medical insurance at work, and the, being able to go for tests, you would probably have felt quite abandoned by the Health…

Absolutely.

I think, one thing I guess I haven’t said is, one of the most important things that you could do, if you encountered someone who has Long Covid, is just be compassionate and understanding, believe what they say. It’s all very real, it sounds preposterous, and wild, and unbelievable, but it’s very, very real, it’s happening. And it’s really scary, and difficult. So just, you know, the kindness from other people has really helped me. And when there have been moments…no, no one’s been particularly unkind…but there have been moments when people maybe haven’t believed the symptoms, or have dismissed symptoms, and it’s really had a profound effect on me, and put me back the way.

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.

I talked, I have, I don’t get, my GP is all right because after I push him and at one time, I brought my friend and she is a biomedical scientist with me to see him to let him see her because I think from telephone he can’t judge how serious my condition is. So I’ve got to really make my friend, to take me for a consult, I say, “I want you to see me, look at me as a human.” Insists that he sees me so I walk through the door, when he saw me, then he really grasp the level of needs that I am having, how much I am struggling. I guess sometimes that makes a huge impact because a video call would be much better than a telephone call because you have more eye contact. You can see the persona, the person how it is.

So it’s like, yeah, you feel that more face to face would help people to understand your needs and

Yeah, yes.

And like, the extent of some of your difficulties. Yeah.

Yes, because now you see me, you know how I am, what I am like and how I am speaking and you can see that I get tired now, you can see that my breath.

And everything is getting more down.

I mean, you, you’ve talked, mentioned a few times that you’ve seen your GP. has your GP been as responsive and helpful as you have, have hoped right from the beginning?

Yeah, so my GP’s been very, very good in terms of kind of supportiveness. It’s…initially it’s all been telephone which as somebody, I’m a people person, I like to be in person.

I like to see them in person. Some of the symptoms are easier to explain in person.

And actually my GP’s been extremely flexible recently with some of the other kind of…I had very sore limbs, I think it was a couple of months ago now, really, really sore legs again and kind of a feeling that I couldn’t move them correctly, so stiffness and kind of an odd stiffness that I hadn’t experienced before, and my GP said, “yeah, come down”, I live five minutes away, “come down, we’ll see you in person”. If it’s something that has a benefit to being seen in person, they’re doing that, which I’m a member of the Long Covid support group] and looking at other people’s experiences they have really not had great experiences there so I would say the doctor’s been absolutely stunning.

Yeah, building the connection to my current GP and, yeah, they were absolutely brilliant from the off.

That’s fantastic.

Refreshing to hear, I’m sure you…

Yeah, yeah.

…hear all sorts of, of horror stories, but that’s been, yeah, they have been absolutely brilliant in terms of responsiveness, supportive, kind of taking what I’m saying, and acting on it but also kind of if I’m asking for stuff to be considered, like I say, I’m on that group, [named website], if I see something else the doctor isn’t particularly aware of up to now and I propose that, she takes that away, validates it and, and comes back as well. So, yeah, really…and I know…I think you maybe feel [inaudible] as well you become an expert on your own health.

And you know…like you know which symptoms you need to speak about, you know which ones you don't, so, yeah, the doctor was absolutely brilliant in that respect, the kind of…

And it sounds as if you've felt…always felt believed by her and respected by her and as you presented your symptoms, would that be a fair…

Very much, yeah, very, very much kind of there was no…no need to convince her, like I explained honestly and frankly what I was experiencing. She could come back to me and say, yeah, this is what I've heard from you, do you agree, yes, this is…this is it. So, yeah, really kind of co-experting essentially, you're the expert on your own body, the doctor's the expert on what we can do about that.

Yeah. I have an amazing GP who has been really kind to me, during the acute illness, right at the start, she kept tabs. I was very fortunate to catch up with her weekly at one point, and then fortnightly, and then spaced out. But she really did keep an eye on me, and that was, when she wasn’t around, the other partners in the practice were also fantastic.

There was one day I phoned, because the chest pain was so bad, and I ended up bursting into tears on the phone to the poor receptionist. They were all so lovely, they ended up getting me in that day for an ECG, and just so kind about it. I think it was difficult for the GP to know what to do with people like me, because it was a new condition, there was no service set up specifically for it. The hospitals weren’t really doing much in the way of outpatients, it was largely emergency work because of lockdown, and preparing for, you know, an onslaught of admissions. So, I think it was difficult for them to know what to do with me, really.

And I think, you can probably get a sense that a lot of this illness, because it’s all been new, a lot of it has just been me trying to work out what on earth is going on. And as a doctor, that has been really, really difficult. I can’t imagine what it would be like as a lay person. The neuro stuff, I thought had gotten better, so you know, the phantom smells, the tinnitus, I'd had some strange nerve pain, like a poker in my ear, really bizarre, but it was very, very painful. Strange kind of scalp sensations, as well, but all such vague and strange things, I didn’t even mention them to my GP, because I thought she might think I was completely mad [laugh].

I know you mentioned that the doctor had said, try some breathing exercises, and those didn’t work for you. Did they give you any other sort of practical, suggestions for things that you could do to sort of manage your symptoms or not?

No, nothing else.

Where did that leave you?

Well, it left me frustrated, angry, because I just felt like, there was no support from the GPs at all. They never even said, you know, we’d like to see how you’re getting on, give us…make an appointment for like two- or three-weeks’ time or something, there was nothing like that. It was just basically, how long is a piece of string [coughs], is what one of them said to me, for getting help, and they just said that I would just…it would take its time, so for me, it just felt scary, because, I just didn’t know what to do, really.

I still have…it’s like pins and needles in my left foot, my left side, and sometimes like my lip twitches on the left hand side and it’s like if I’m tapping something with my left fingers, I can feel a vibration going through, like so the nerves, and the tingling like comes and goes like in different like intensity, and I feel like that for me isn’t right, and I’ve already mentioned it to them and they said it’s maybe my adrenal system.

But I feel like I don’t even want to bother phoning them back to say I’ve still got this, because I feel like I’ll just be shrugged off again.

[inaudible] I just feel like…I’m actually like a hypochondriac or something, that I feel like I’ll be phoning up and just be coming across as, because my blood tests are fine. As far as they’re concerned, my blood tests are fine, so there’s nothing they can do.

Finally just talking about the quality of care that I received, during the Covid itself it was very frightening. You can’t see a doctor but once you get told how to get beyond the initial one-one-one response, they give you a code so that you can get in and get past the person who triages whether you need to speak to someone and actually eventually you get to speak to a nurse. Usually, a nurse will ring you back. And they were very good, the people that rang me back, the nurses, they…they could help calm me down and talk you through your symptoms and tell you this is when you need to go to hospital, if this happens you need to go to hospital. So, all of that was good and using the oxygenator measure was good and that helped me to know…I knew when that went to a certain point that I had to…had to call for an ambulance.

The GP was good as well. There was obviously links in one-one-one and the GP and the GP did a follow-up call to me the day after I’d had a consultation with 111, so they obviously were linked and that was, you know, it was at the height of it, so it was impressive.

And when you say in hospital, are you referring to the A&E?

A&E.

Yeah, so you've not had any inpatient stays?

No overnights, literally an hour, "Let's do some tests" and…and you're away. Two…yeah, two of those were really good. Both, kind of listened to, understood, both doctors really good. Like, "Right, let's make sure this is nothing else. Let's do some bloods, let's check these other things". One of them…and I haven't counted it as a visit, I had the second bout of chest pain, I had really, really bad chest pain the day after that I'd been in A&E and their parting thing was, "Right, if you get chest pain again, if you get this again, come back". 

Came back in, presented with exactly the same symptoms and the team weren't quite sure what to do with me. So, I got sat in a chair for over an hour with nothing being done. And the result was, "Oh, we think it's all the other symptoms of long Covid, so just take some paracetamol". And that doctor was very dismissive. I felt very let down. The other time…and I'm not someone that wants attention, but every other time I've come in I've got a bed, done some bloods or we've put you on an ECG, this was, "Right, just sit in a chair for an hour", like I'd been forgotten, then when I did get it they took me to another bit of the hospital, because that was quieter, and just said, "Oh, there's nothing we can do, go away, take some paracetamol". "I'd just been taken off tramadol by your colleague yesterday, I have an acute pain requirement to have tramadol, paracetamol's not going to hit that”, and the parting, “Why are you here, if you get chest pain, come back". I said to him in the corridor, I was like, "I'm here because you told me that yesterday. Just take paracetamol and if you get chest pain come back. I'm not going to get stuck in this cycle, like that's why I'm here, because I have chest pain." 

So that wasn't great, but then speaking to the GP afterwards she's managed to solve the rest of it. So just about…that was the one time that I felt, hang on a minute, I think…that was the one time I thought, I don't feel believed, was that revisit at A&E. But the two other times were absolutely brilliant.

That’s what I’m talking about and after I came out of hospital, last [inaudible], which I was, they found out I’ve fallen at home five times now. They were back very fast [laughs]. They put adaption in and then the hospital people, they put in the adaptation for me and I’ve got push stool now. I’ve got a bath board, a couple of handles, in place to help me to get up. I’ve got the tray, zimmer tray thing help me move around and walking stick to help me but then the community therapist came and because I could not do certain things, I was discharged, just like that. No more continuation. So if I can’t do stairs, they can’t work with me. So, basically, means I’ve got no movement at all. The therapist in the hospital says I can do those exercises, [inaudible] exercise therapy because they gave me a lot of exercises and since I can’t do it and I get tired going to the hospital and that, they discharged me. So, basically, I’ve got no physio at all.

I’ve had a CT scan of my brain, and that came back normal. I done an ultrasound on my heart and that’s came back normal, as well. So, I mean, nobody really has the answers to tell me what it is.

So, it sounds like over the last year or so, you’ve had, like a whole suite of different tests?

Yeah, I have, yeah. I’ve had several blood tests, I’ve been to an ENT to look at my throat. I had a, I’ve been to a neurologist, I’ve also been to a cardiologist. And there’s nothing substantial shows up. Like I said to you before, the only physical thing that I can kind of prove is ulcers on my throat that I get.

And how does that make you feel with, you know, the kind of negative results coming, a whole series of negative results coming back?

I mean, it’s a kind of Catch twenty-two, because it’s really good that there’s nothing showing up wrong, but then it would be nice if there was, they could have kind of, they could get answers to what is causing me to feel like this. It’s really, it’s bizarre.

But like I say, it’s good in a way, but then it’s bad in a way, as well.

It’s very frustrating.

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.

And in fact, through work, I have access to private medical insurance, so I was able to access a number of specialists. so, I have a long list of things that, it wasn’t, which is quite good. But there was the, I think it was the respiratory specialist who I saw in January, and even then, I think said, and I quote, “I don’t believe in Long Covid”. 

That’s what the respiratory specialist said?

Yeah. Okay, that’s nice [laugh]. But if I flip that around to, only just a few weeks later, it was the neurologist specialist who started off with, he kind of, you know, by that time I'd seen a number of professionals, and kind of, he’d read the notes and said, “no, this is Long Covid, we’re going to, you know, we’ll do the MRI, and we’ll run another couple of tests, but this is Long Covid, and when it does turn out to be Long Covid, I really don’t know what we can do about it”. 

Okay.

So, he ran the tests, and there were a number of things that were discounted, which then got me back to exactly where, the position that he said we would be at the start of the engagement.

So, by last September, I'd heard some. The single, …and no offence to my GP, and no, no doubt everyone was learning about it…the single best source of information that I had, by a country mile, was, the occupational health specialist, that I engaged with through work. Who, and that individual was really on the ball, probably I suspect, because Long Covid was to have more of an impact on occupational health at that point, than perhaps other parts of, of, in case of health. But she, fixed very quickly on that as the likely cause of, the issues. She gave me some recommendations, pointed to me some, a couple of excellent websites, that were focused on supporting folk with ME or chronic fatigue syndrome. 

But, and that was, you know, I think where I actually first, for example, you know, got the information on, you know, I think it’s pacing, it refers to, you know, the don’t push yourself, pace yourself.

So that, you know, in the early days, you know, before it became, there was more information available, that individual was by far, far and away, the best source of information for me. And I fed that back in through, kind of our internal HR, but with a, with a glowing report. and I've been lucky that I've had access to the same person a couple of times, after that, kind of on a regular basis. And again, I'm getting good updates there on, you know, kind of, just suggested ways of helping to manage it.

I was going to ask you whether you had any idea about what might have made the difference?

No, and I think that’s one of the most annoying things is that you can spend a long time trying to guess what you did to try, like what you did to make the symptoms happen and or get worse. And actually, I think sometimes it’s random. Like, the virus does what the virus wants to do. And it’s obviously some that you use which are going to make worse because sometimes it’s just chance.

And how is it to be in that situation? What impact does it have on you?

I think it’s tiring in itself, it’s a long time to have had the same condition. I’ve found it really confusing as well. I think that’s one of the things, trying to understand what’s going on. And actually, already there’s quite a lot of seemingly contradictory advice and, you know, I’d be trying to read it and understand it and work out what it would mean for me. But then it maybe didn’t apply. And I think, you know I mentioned that I’ve been signed off work. That, I’d been avoiding that, like I didn’t think I needed that. I thought I was managing, I thought I could do the pacing thing. And when the doctor said that I should go off work, I was just so relieved because I didn’t have to keep trying every day to, to do my work and do all my things at home . But it was also hope because until he suggested that taking off time, taking time off work would help me to get better I didn’t have any particular reason to believe that I would get better. And kind of, some point I was just thinking, you know people get chronic fatigue and they maybe don’t recover to where they were, ever. Or maybe it takes a long time for them to get there. And I just didn’t really know whether I was going to be in that category or not. So, I suppose I was trying to, to accept it but actually I tried to accept it too early in the sense that the doctor reckons that I probably am going to get better with enough rest and so on. So that’s been a kind of rollercoaster that’s been confusing. And there’s been lots of healthcare people who, who’ve tried to help me who have been helpful but it’s just really confusing and frustrating.

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.