Long Covid in Adults

So, I think this is actually quite minor, but it took me quite a long time to be able to get a doctor’s appointment to even have that five minute conversation with my GP because previously what would happen is, previously at my GP you would just call up first thing in the morning or not even first thing in the morning and you would arrange a call back and the receptionist would say, great, Doctor X will call you back between this time and this time. But they have recently, over the last couple of months, I presume because they’re really overstretched, they’ve started a system where you’ve basically got to sign into— to Patient Access. Like first thing in the morning like 7am in order to book yourself a call back from a GP. And so for a few days, even though I was kind of logging into Patient Access at like 7.30, all of the time slots had been taken, already. And so it actually took me a couple, it took me maybe three or four days until I actually could get a time slot basically to get that GP to give me a call. And I think if it was like a, if it was a really pressing issue, I probably, like I would have been able to call my GP and, and call the receptionist and just say, “It’s really urgent.” But I don't know, I guess it wasn’t like you know, life or death at that point, really. But maybe, in retrospect, maybe I should have done [laughs].

So, have you been able to see a doctor or someone about your own symptoms?
 
You know, the doctor no see you. Just by phone, telephone calls. So, whenever I tell him my symptoms what I’m feeling, they keep for you the medicine, the pharmacy. You collect from there. No one sees you.
 
So, you haven't talked to a doctor face-to-face about how you’re feeling?
 
No. You know, now you can’t see your doctor, since the Covid, you don’t meet a doctor.
 
And have you been able to explain to them over the phone how you felt?
 
Yeah.
 
What have they said about that?
 
I have a back pain, leg pain, this pain. They give me medicine on that.
 
Okay. Yeah. And has anyone said to you, this might be because of Covid?
 
No. They not interested in all these things about Covid or no. Whenever I have a pain, I call they say, “Oh, we left for you the medicine at the pharmacy go take it.” About the Covid, I had a Covid, I call the 911. So, they helped me. They say, “You have to go test it.” I test positive. So, I know what I have to do at home. I stay at home more than how many days I stayed home more than fifteen days at a time. And more I stay at home because I was not that much recovered. So, two months I get fever, the same symptoms. I know this Covid come back again. I do the same medicine. I stay home. So, last year, I’ve been home, I’m home always. My friends they bring food and I give them money. They buy for me. They leave the house outside the door just you know.
 
And so, even now, when you are still getting really cold or maybe fevery, tired, you know, really, really tired and low energy, the doctors aren’t listening to you about that?
 
Just go buy the vitamins. Doctor will not give me vitamins. I have to buy vitamins and I have to eat nice food. I have to do not what they do for you. Even if you don’t eat, if I call they say no appointments. I have to do online booking. They will answer me after two days and doctor will call you after one week. So, that is stressing, you know. If you tell him he will give you medicine, antibiotic or go buy he’ll tell you. I mean, vitamin go buy he will tell you. So, it’s better I do it myself. Buy things that make me strong.

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.

So, did you stop work altogether for a period after the end of January?

[laughs] I ended up phoning my GP at the end of January, about the twenty-fourth of January, somewhere around then, and I was in floods of tears. And I said, I don’t know what’s wrong, but I can’t get back to me, I’ve lost me, and they were amazing [laughs]. I mean, the GP that’s here in…I live in [place in county], and hats off to the GP and everything there, they were immediately…they were amazing…they immediately knew…could see the signs of Long Covid. And they set a treatment plan up there and then, and said don’t worry, they put a treatment plan in place immediately, got me signed up to the Long Covid clinic here in the [region]. And regularly the GP was supportive, so I think I spoke to her probably every week at this point in time, and it was having that support that was crucial. There isn’t a magic pill, and I knew there probably wouldn’t be a magic pill after having Lyme disease, after once treated, this lovely word of take your time, pace yourself, that we all frustrated with, and the setbacks, especially as I say, when you’ve been a fit individual, you think, well, is there light at the end of the tunnel?

And you said that they had been very quick to set up a treatment plan, so…

Yes.

Can you describe what they set out in the treatment plan?

They were very quick to offer any talking support. Any support, talking support, which was really…I only spoke to them a couple of times, but it was good just to say, aah, and just talk to somebody for five minutes…rather than falling off a cliff, so to talk to somebody to say, look, just take it easy for a minute, just look after yourself, never mind them over there or this over there, you need to get well, or else you can’t deal with any of that, and that was really helpful, so that was put in place immediately as well, so I spoke to them the next week.

So, it sounds as if your GP practice were quite knowledgeable about Long Covid, I mean, its existence and what was available.

They seem to be.

Obviously one of the challenges for people who became ill with it in 2020, when it wasn’t a known thing, but it sounds like they both believed exactly what you were saying and were knowledgeable about what might be available, and possibly the limits of that as well.

Yeah, very much so, yeah. Yeah, immediately. I mean, once they went through diagnostic process and they’d looked back at when I’d had it and the dates I’d had it, how long I’d had it, what the symptoms were and things like that, and then naturally picked up with the echocardiogram and seen the heart murmur, so there were things that were in the loop but they just hadn’t been pieced together until I fell off the cliff in January, otherwise they would have probably just thought, well, I’ve just gone on after Covid, but it just didn’t. And so, when you look back, you could see the problems that were there, and probably the one thing that you hadn’t spoken to them about at that point in time were the cognitive. Because predominantly, what made me fall off the cliff was the chest pains. I maybe would have bumbled along with the cognitive, but I couldn’t have with the chest pains, it was just…they were on weeks and weeks. It wasn’t just a couple of weeks it was like sitting down constantly having chest pain.

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].

Yeah and my GP was really open to having those discussions with me as we found out more and then the other thing I did that was really helpful was that I had some cognitive behavioural therapy so my GP was great in that I didn’t want to be sort of labelled, ‘Oh, you know, it’s all in the head kind of thing,’ but I actually found, I had a really good experience with the CBT. I know not everybody does but one of the things that happened during the CBT that was great was they told me to stop looking at the forums [laughs].
 
So once I started seeing the same GP and having that continuity that was amazing, like I’d not, I’ve had a really great relationship with my GP but my initial consultations were really difficult because I was speaking to a different GP each time just because of the fact that I was calling on the days when I felt the worst and my GP wasn’t necessarily there and I used to see a particular GP and then it just so happened that I got the GP I’m now with and she just, there was just something about the conversation that made me think she’s taking it seriously. It’s not that the others weren’t, the pandemic meant that everything was just up in the air and so then I just kept calling back and speaking to her each time but I think what was good about it is she always made me feel that she had time for me because sometimes I was ringing once a week and at least twice a week, at least twice a fortnight and I was conscious, you know, I work in primary care research, I was thinking, ‘She’s going to think ‘Oh my gosh,’ but she never made me feel that way and I remember one particular conversation where I dropped my son at school, I got back and she called me just as I got back and I remember saying to her, “I just, I don’t know I’m ever going to go back to work. I don’t know how I’m ever going to do anything that I did before,” and I was really upset and she was just so lovely and said, you know, “Even if you have to live with, you know, disability or fatigue for the rest of your life, you will get back to work, people get back to work, you know, they live relatively normal lives,” and it was that conversation that really sustained me I think.

I was never told, no one ever said to me “This is in your head, you’re making it up, I don’t believe you, you know, you’ll get better, you’ll get better soon.” And for example when I had the pins and needles in my face and there was a genuine concern that Covid had caused something and they wanted to look into that so I mean it’s with my GP practice it’s always difficult to get an appointment like it’s really hard but you know for example with the pins and needles in my face they thought it was a stroke, they referred me straight on to the HOT clinic, you know, in the A&E as an outpatient so the support was there very quickly.
 
I think, you know, there was one locum doctor who sort of said to me oh you, you know, it’s just gonna take a bit longer you’ll get over it and, you know, that advice might have been true for some people and that is exactly what’s happened so, you know, I don’t begrudge him saying that to me as a, you know, so flippantly just sort of but I do think that, it’s interesting that the GPs and the consultants I spoke to have just a very medical view of the condition and, you know, there’s not an understanding I don’t think of the holistic aspects of, you know, requires support, I think and that’s a bit, all of that, you know, I had to look into myself really.

So, I went to see her and I kept, I said, I kept telling her, I felt, you know and as a healthcare professional, you need to know these cues when people are asking for help. I felt I was asking for help. And I was begging her to help me, in a way. I was like, if she’d given me prescriptions for antidepressants, I’d have taken them because that’s what I felt I needed. I needed somebody to just boost my mood and she gave me this week’s supply of Valium, and I, Valium, you know. And it would be 2mg. So I snapped them in half and I had one every other day [laughs]. I didn’t even take them all. And I thought to myself right, pull yourself together now. I did, I thought ‘Pull yourself together now for god’s sake’ and I did. And I have felt better since then.
 
How could that have been different for you, with the GP?
 
I think she…I was sort of telling her my plan of care, but she wasn’t giving me a plan of care and a follow-up. “Well let’s see how you are in 4 weeks.” So that’s what I needed. And I needed that from the first appointment, because I kept telling her I was really low in mood.
 
And was she saying anything about that?
 
She was just saying “Oh do you want to be referred to some Covid clinic or some…?” And I was like “No, I just want to feel better.” You’re the GP, treat me, you know. I am a person, I’m a fixer I have to fix things. And that’s where I felt, you know, I didn’t want to wait, and go on a waiting list for a Covid clinic. I didn’t feel like, we’d all sit in a group with people talking about how I felt. I’m not embarrassed by that, if I needed that I would do that, I didn’t feel that was what I needed.

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.

Some people don’t go and see their GP because they think “Well what can they do I’ve got Long Covid and there isn’t a cure.” I would like to encourage people with Long Covid not to lose touch with their primary care doctor, that’s their GP, because well you need to have someone who’s looking after you, and particularly you need to see somebody if your symptoms change, if you get more breathless, or you start having pain. Its really important to make sure nothing new has happened. It is quite easy when you are feeling so ill to say well its just the Long Covid but actually you can’t be sure always, so it is worth checking out any new symptoms. And even long-term symptoms like fatigue if they are getting worse it is really worth ruling out other causes, you might be anaemic for example and that is quite easily treatable. So don’t think there is nothing that can be done because there are things, and your GP will want to see you.