Long Covid in Adults

It would be really interesting or useful as well to find out a bit about your experiences of healthcare. So, at what point did you seek healthcare support?
 
I think, so the first time was once we’d had the initial infection and it seemed to come back. And then went to see the GP again probably in August or something. Particularly about the migraines and I got some medication for that. And there’s been this kind of pattern throughout the autumn of going for tests, an ECG, I think an X-ray, blood tests and so on. But the NHS like none of it’s really, it’s really stretched at the moment so there’s these long waiting periods in-between scans. Or you might get a scan but then you don’t ever get a letter back to say what happened.
 
And I kind of figured out okay, wait a minute, I need to go and get in touch with the, the GP if I want to follow it up. So, there’s this kind of long running investigation going on in the background but still that’s not helping me particularly with the symptoms that I have there and then, I suppose.
 

So, I’ve had, you know, bloods done for lots of things, you know, so if you imagine every blood test, you know, liver function test and…right up to, you know, being a celiac and…you know, the amount of oxygen in your blood. You know, and stuff like that. So, I’ve had all…lots of blood tests, I've had lots …away for the GI things, I’ve had a lot of respiratory tests, you know…
 
CT things and my heart particularly……part of my lungs and then going up and, like, you know, you put a tube in and you do these things and they measure your output. So, that sort of test.
 
And they’ve all been inconclusive, so they’ve…
 
Yeah.
 
…ruled out certain things but not…?
 
Yeah. So, you’ve not got this, you’ve not…yeah, you’ve not…you know, so you’ve not got asthma, you know, so it’s almost what it’s not…
 
Not.
 
You know, not…yeah.
 
Yeah. Rather than helping you to…
 
You know, that, I have…you know, I haven't got lung cancer and that. I haven’t got heart disease and I have…yeah.
 
How do you feel when the test results come back?
 
I just…I mean, you’ve obviously got to be relieved…but you’ve not… you know, in then comes this frustration, you know, and when I go, you…you know, I have…I see the…you know, I see the question, like, so after the bowel thing it’s like, no you…you know, we’ll need to treat it as generic IBS. You know, but I haven't got generic IBS. You know, I didn't have IBS before I started this journey, so…can you tell me how Covid…you know, it’s the same question, why is Covid doing this to me? You know, the residue of Covid or what…or whatever it is, why it’s doing it to me. Because it’s whatever, it’s affecting every bit of me. So…yeah, it’s nice to know that I haven’t got, you know, pancreatic cancer or whatever they’ve tested me for. But it’s still…still not an answer to how I feel.

I had a referral to ENT because of my ongoing ear issues and they did also refer me to a Long Covid clinic which I’ve just had one phone call from that. And then just very recently I’ve been referred as well to neurology which I, I’ve gotten, I’ve just received an appointment for February through the post, so that’s obviously a little bit of a wait…I don’t necessarily expect that to show anything up, but it’s just to check that there’s nothing, nothing else going on I think.
 
I guess it concerns me a little bit when the doctor wanted to refer me to neurology [laughs]. Just because that obviously sounds sort of like they want to see if there’s anything going on in the brain, you know, obviously in the brain. So, but the doctor was quite reassuring that that was just, you know, just to check really, rule anything else out; and they did tell me they didn’t anticipate that showing anything up particularly. but probably out of everything that’s the thing that sort of I suppose scared me a little bit the most.

Because what was happening was that my GP had referred me to rheumatology, he’d referred me to thoracic clinic, he’d referred me to all of these independent people, so I was going off and I was getting, like, a pain clinic and I was having all these different appointments with different people and I was getting dead confused and nobody... it was like everything was coming back... all my tests were coming back normal and it was just—They were dealing with everything individually not holistically—Yeah, everything was getting dealt with individually and nobody was really bringing together the Long Covid bit.

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.

Yeah. I did talk to the GP about having my T three levels checked which is what not routinely checked with the NHS. And there’s lots of, you know research out there. So, I changed my levothyroxine, I told you I was going to make that conscious decision to try the natural, desiccated version. And he said he’d support it with some blood…that he’d continue to do the blood tests but it’s not a full thyroid panel. So, I’m going to look to see if I can get a private panel done. And then I suppose my next thought is whether or not I just see someone like an endocrinologist or someone privately. I…I think it would be an endocrinologist, possibly.

And so I saw a lot of doctors in hospital. I saw a rheumatologist because I’d got rashes and blisters on my feet and my legs were poor circulation. And she was the one who diagnosed me with Ehlers-Danlos syndrome. And I saw the cardiologist again in hospital and a neurologist and none of them could really give me any help other than other than the wheelchair. And so, when I came out, I were really hopeless. And we, I would Googling it with my husband about the circulation in my legs. Looking at the Ehlers-Danlos syndrome because that’s what I was told it was. And it were coming up saying, POTS. So I thought, ‘Oh that feels more likely ‘cos it feels, to me it just happened after Covid and the POTS was post Covid.’ So, I paid to see a POTS specialist cardiologist about my legs to say they’re blue. Does he think it’s linked to the POTS. And he said, “Certainly is.” Started me on a tablet. And then reviewed me like every six weeks after that.
 
What was it about trying to access care through the NHS that meant that you chose to go private?
 
The specialist knowledge and the, the doctor, the doctor that I was seeing in the NHS was saying and still say, “We don’t have any evidence. We don’t, we’re not authorised to give you treatment. We know this is all very new. There’s nothing we can do.” Whereas the private doctors have been willing to put their neck on the line and say, I think it’s this and I think it’s that. And I’ve had to accept they might be wrong. They might be guessing. But they’re the only ones who’re trying anything or suggesting anyway that I can get better.
 
Lots of the doctors or every doctor that I’ve seen on the NHS have said to me, “You seem like you've got POTS or Ehlers-Danlos syndrome or Long Covid. There’s nothing we can do to help.” The cardiologist gave me some tablets and said she’d review me in six months and then that meant I were left at home for six months, in the wheelchair, poorly. So, we just, just for speed really to be seen and to get options for treatment.

Well, personally I…I feel like I’ve still got lingering symptoms where, I’ve got like kind of nerve issues throughout my body and stuff, and I’ve still got shortness of breath, so for me that’s concerning, especially because I like to be active, so I want to know if my…I’m functioning less, so I don’t know if this has, possibly like damaged me in some way. So for me, I’d like to know, because I’m starting to walk a bit more now, is it okay for me to do that? Can they give me some sort of maybe like a lung test or something like that to make sure that there’s not…there’s like, you know, or maybe even…I don’t know if this is me just being over-anxious now because I felt so bad, but to know if there’s maybe been heart inflammation or something, I’d like know that there’s not been anything damaged, really, so I feel like I should actually get a body check, to be honest, but I don’t think you can get that from the NHS, you’d probably need to pay for that private, but I actually feel like I need that, I feel like I want to know…that I’m okay.

So is everything me or not or it’s left me something coronavirus because, when you see in the news some people before moved their hand now can’t move their hand that much. And that’s my daily life as well. I feel the pain, I can’t move my hand that much so I don’t know. So in that way I feel, whoever got coronavirus or that, proper check-up should be done in further because you never know what is left to you inside and, when you go GP and doesn’t do the full check-up as well. Full check-up is less expensive than single check-up, you know, like what they doesn’t do it [laughs].