Richard

Age at interview: 49

Brief Outline:

Richard and his family caught Covid in March 2020. He and his son have suffered from multiple and very debilitating symptoms in remitting and relapsing waves for almost two years, including chest pain, insomnia, brain fog, and fatigue. Even though Richard is a doctor, they have felt very dismissed and not believed by many of the medical professionals they saw. Others who were sympathetic did not have any effective treatments for them. Richard attended a Long Covid clinic and his son a pain clinic, but they didn’t find them very helpful. The have both been taking colchicine to help with their heart symptoms. Colchicine is a powerful anti-inflammatory drug normally used for Gout that has been shown to help with inflammation of the heart muscle and lining. Richard was interviewed in December 2021.

Richard is a Locum GP, married with two children a son (13 years) and a daughter (11 years). Ethnicity: White British.

More about me...

Richard and his family caught Covid in March 2020 before the UK lockdown started. His son rapidly progressed from feeling ropey to ‘screaming in pain, chest pain, coughing, fever, really unwell.’ They placed him in isolation at home, but a day later Richard was displaying flu-like symptoms and a strange sense of smell and taste. His wife and daughter had mild symptoms; his wife had conjunctivitis, muscle ache, and a headache and his daughter had a bad fever for two days, fine for seven days, and then another 14 hours of bad fever. Richard—who is a locum GP—was ill for about 10 days initially, then, 21 days after the start of Richard’s symptoms, he felt severe pain in his lungs and thought he might have a blood clot. He stayed at home but when he developed cardiac symptoms he called an ambulance; his tests at hospital were slightly abnormal but didn’t indicate a heart attack and he was sent home.

Richard continued to have crushing chest pains for the next three to four weeks and his ability to walk was severely affected. During this time, his son, who had been recovering well, suddenly at five weeks after his first symptoms started to scream out that his vison had gone black, and he couldn’t feel one of his arms or his legs. Richard thought it might be a severe migraine, but his pulse was very high, and he developed the same heavy chest pain that Richard was experiencing. Richard was unimpressed with their GP’s reaction to his son’s symptoms – the GP admitted he didn’t know what to do. Richard took him to the children’s assessment unit at the hospital, but his test results were normal. His son before Covid was ‘mega fit,’ active and happy and had rarely seen a doctor - Richard felt dismissed as an overanxious parent, but his son was referred to a chronic pain clinic. Unfortunately, they didn’t get on with the clinicians or find it helpful and his son felt they talked down to him and dismissed his physical symptoms as ‘all in his head.’

Having their physical symptoms dismissed was a common theme for both Richard and his son, especially with less senior doctors and even medical friends. Consultants, he thought, seemed to be more sympathetic and take it seriously. As a doctor, Richard feels that “It’s absolutely awful being on the other side. It’s given me a fantastic insight into what patients go through and I probably, I can equally probably be as guilty because of some of the comments I said about colleagues if there was a direct treatment and I could jump the queue by going privately, I would.”

Richard was eventually diagnosed with myocarditis (inflammation of the heart muscle), but his son has had no definite diagnosis. Both of them have continued to have relapsing and remitting symptoms for almost two years. “We were fairly all right actually in the summer last year, but a few months we felt completely brilliant, you know, we went walking—bike rides, cycling, cooking, we did everything, like normal, just totally normal and then just went on it again, and then, you know, January, February, March this year were just the worst and it was just horrendous.” They have both been taking colchicine to help with their heart symptoms, a powerful anti-inflammatory drug normally used for Gout that has been shown to help with inflammation of the heart muscle and lining.

Catching Covid again hasn’t helped Richard’s symptoms; “The second time round was, like, a billion times worse than any that I had the first-time round,” he said, but the whole family are worried about catching Covid again. His daughter has coped well, but she has been very worried for her brother and been upset: “I’m worried about like [brother’s] health and my health and worried about coming home with Covid and, you know, making us more poorly again.” She gets angry at school that other kids are careless, partying and doing stuff and don’t care about Covid, so they’ve not seen the impact of all it can do.

The family have been vaccinated; his son is due to have his second dose soon. Richard and his son did react to the vaccine, and they brought on worsening symptoms; Richard found his brain fog and insomnia increased after the vaccinations, but they are still positive about having them.

Richard feels his wife has been brilliant and very positive during this time, but even she has found his Covid rage mood swings, brain fog, and insomnia difficult to deal with. During this time Richard’s wife has been the main earner, as Richard has been unable to work and only recently gone back part time, juggling her own business, staff, Covid restrictions and caring responsibilities has been very hard on her. As a family he feels that “We’ve all had enough because it seems our whole life just revolves around bloody Covid.”

Richard’s message to health professionals is that he would like Long Covid and its multisystem symptoms taken more seriously and ‘don’t blame it all on anxiety’ and be more open to treatments ‘I think a lot of medical people are just bound with, you know, the fear of litigation, the fear of trying anything new, or veering off the pathway’.

Richard says that some less experienced doctors don’t understand what Long Covid is and they think that “because it’s multisystem it can’t be real.”

And I think you’ve got the other thing is some of doctors will go, well OK, well, if they don’t know what it is, it’s anxiety, and that’s what it is, so basically well, all the symptoms, because it’s a multisystem it can’t be real, you’ve got it’s got to be all coming from your head and you’re making it all up type of situation; that’s, that’s the impression that it didn’t happen to me but it was my, my son, that that sort of thing, with some of the middle grade doctors. Whereas I think with consultants, I think generally when they’ve, they’ve experienced more and seen more weird stuff going on, they’re the ones more likely to think, oh, it’s something here. But you could, because you’ve got the medical establishment, they can’t, they’ve always got, I think you always get the middle grade doctors who want to come up with a diagnosis because they can’t think of one, they’ll just tell you it’s anxiety, instead of going, well OK, let’s just sit on this for a bit, you know, a whole load of tests were normal but there’s got to be something going on, why can’t, you know, think well hang on, this is a new disease, there’s obviously new, sort of, pathology or pathogenesis of what’s going on, we don’t quite understand this yet, and say, look, I really don’t know, just put your hands up and say, and I think that’s what we haven’t got: we haven’t found all the confidence and experience to say, look, we don’t know.

Richard (who is a GP) was worried that the paediatricians were thinking he was exaggerating his son’s symptoms and that he would get investigated by Social Services.

I mean, I even spoke to the paediatricians and said, “Look I mean, there was quite a lot of symptoms there and I don’t want to come across like I’m a complete nutter of a patient,” because when patients come in and see me, like a whole pages of symptoms. I’ve had no-seriously, I get a two, three, four-sides of. and you think, my goodness, you know, you have been saving this up or really you’ve been over-analysing some of because some patients do, sort of, somatise a bit, and that and that’s what it looks like, but, you know, I was coming in as a major somatising disorder by proxy, like, I was getting worried and eventually, over the whole of last year it did cross my mind that am I going to be investigated by the Social Services for Munchausen by proxy [laughs].

You know, because I started-, because I couldn’t sit because the thing was fortunately he was in a hospital in agony and with all these symptoms that he could see that, you know, that we weren’t making it up, but you just start having these strange thoughts when you’re at home and you’ve got nothing else to do, because you’re not working, and you start worrying that am I coming across as that as a parent, you know, and that that sort of thing obviously did cross my mind—especially as a doctor you had to keep up to date with the child protection and everything else and start thinking. Because I had the heard stories of some families have been with Long Covid had been caught up with this, sort of, situation as well.

Richard’s son loves doing sport and feels like Long Covid has taken away things he enjoys.

But now he’s, like the other week he played a whole game of rugby and he had no pains afterwards, he was good. He’s moaned he had… pain, the other day a day ago he had chest pain, but he’s been outside in the garden this morning, yesterday kicking the football around just in the garden, going for a few... going for a dog walk, he’s gone, done a bit of jogging, because he’s naturally loves doing sport. He, and then that’s the big thing for him, he said, “That’s what Covid’s done, is taken away all my hobbies in my life. It’s, it’s stopped my, stopped me doing all the sports I enjoy, I absolutely love, you know, I love learning, it’s stopped me from doing that,” you know, so it’s been, it’s been a real challenge for him, you know, really, really hard, it’s difficult.

Richard feels fortunate that his family is able to live on his wife’s salary.

I mean, fortunately financially-wise, I mean, I’ve taken a huge pay cut, but my wife earns enough from the business that we’re OK, we’re still financially no problems at all, and in fact it’s taught me that I’m probably not going to go back to ever working again as a-, doing the insane hours that I used to be as a GP, so I’m definitely changing that for the future, there’s no point killing myself. So yeah, it’s been very, very, very stressful for obviously all sides.

Richard son’s symptoms deteriorated significantly after going back to school. He started having migraines, developed brain fog and experienced confusion.

And then my son went back to school in September summer term and that’s when his Covid really let rip, I mean it went long-haul, huge relapses. He had the migraines, like, going blind in class, he started developing brain fog, which he never had before. So he was sitting in a classroom, and bear in mind he’s been at that school since the age of four, so he knows the school inside and out, he knows all the teachers, and one of the teachers, who he’s known since Year 3, he didn’t know who he was, he was sitting in the classroom and he didn’t know what subject he was being taught and he didn’t know, like, what was going on for five minutes. So he was getting mixed up between geography and the chemistry class, mixed up with the teachers and mixed up with the room he was in.

 

He did also write and he’d come and showed me some of his work and it’s, or write an essay and he’d just write three words, three same words per line, all the way down the whole page, so his brain had been locked and he’d just writes, like, three words, a bit like The Shining, you know, the guy with the typewriter? And he was writing things like that, and it was unbelievable, you know, so he was massively behind, you know, having, like, absence times a lot at school.

Richard and his son have Long Covid. It’s been really hard on Richard’s wife and daughter. He says his wife struggles to cope when he gets “impending doom” like symptoms.

I get impending doom symptoms coming on, right it’s just, it’s just that instant, like that, it’s, it’s like a, sort of, anxiety psychosis, it’s bizarre, and then just quickly disappears, it comes and it goes, it’s instant like a switch on and off. And my wife’s, she says, “I can’t cope with being, when you’re like that,” I mean, it’s just causing, you know, she’s, she’s been really good and coping really well, but in the last few months she can’t cope when it happens.

 

Well, my 11-year-old daughter’s been brilliant, just quietly just, you know, we ask how she’s doing, oh she’s quite cool, she sits and she does, you know, she, sort of, does her own thing, and, you know, so she seems to be really good. She, she has had a couple of moments where she’s been upset and cried, “I’m worried about like [son’s] health and my health and worried about coming home with Covid and, you know, making us more poorly again,” and gets angry at school that, you know, that other kids don’t careless, you know, partying and doing stuff and don’t care about Covid, so they’ve not seen the impact of all it can do. So yeah, it’s been, it’s been really hard; hard.

Richard was very upset that the chest pains experienced by his very fit teenage son were not taken seriously by his GP.

I don’t know, I think it’s quite weird, my son saw the doctor that that come to the school and you, because, oh, he had so many chest pains on, in the first month back in, you know, some of it was probably anxiety related, I mean, I admit he was absolutely terrified of catching Covid again, so I’m sure he was getting some pains in his chest from that, but some of them were generally, there’s definitely something going on because you don’t get chest pains when you’re, like, enjoying yourself and then kicking a football around or playing tennis, or you’re watching a movie and enjoying yourself, and, you know, or playing his computer games and he suddenly goes, “Uh, I’m in agony,” you know, you’re not, that’s not going to be a psychological response, and, you know, and so I even went to see the doctor, GP there, I said I want to have a chat with him afterwards and, you know, basically then my son sent an email back saying, ‘Okay, I was in the room for two seconds and just told me it was anxiety and go away basically.’ And then I had a phone call with him and said, you know, basically that I laid into him, I had a real go at him, you know, I was really quite angry about the whole thing, the situation, you know, saying it’s just anxiety, so that you’re partly right but realistically, you know, you just come to the easiest conclusion that you can make as a doctor, instead like working exactly what else is going on. You know, if you bother to read the notes, we were talking about other treatment options for him, we’ve been considering, like, moving to aspirin because we thought it was a bit risky, colchicine, going on treatments like that. Do we need to go, is it like, does he need to have another echo again, do we need to get the repeat MRI? That’s not happened yet and everything else. And you know, he was like he was backpedalling a bit. But, you know, basically, you know, they won’t speak to us anymore, so, you know, I was livid, I was really quite cross about the whole thing, just dismissed.

Richard said the pain clinic team were “vile and patronising” to his teenage son.

(Clip discusses suicidal thoughts)

And then this pain clinic team were just vile, you know, the way they spoke to him, patronised him. They spoke, they were really condescending, they talked to him like he was, like, a seven- or eight-year-old, you know, it was just in baby language and everything else, and it just made things worse, I mean, it basically made him suicidal.

So, we had to do this all through the psychologist to tell her that, you know, he’d been harming himself because of this pain clinic review, and it just made things worse. I mean, they asked me a simple question like, “Oh, what have you been doing to help with his pain?” And so, I mentioned that we, you know, we’re trying to distract him, do a few things, and I also mentioned about the sort of, low-histamine diets and he’d been having anti-inflammatory painkillers. Now, basically she just cut me off and said, “Stop talking about that sort of stuff, you’re not supposed to talk about that in front of your son,” and ordered me out the room when I was having the, you know, it was just like completely.... I was, I couldn’t believe I was being spoken to and basically the psychologist the pain woman, she kept on going on about she’s a consultant care practitioner, but basically a nurse with psychologist but using a consultant title a lot, going on about how good she was all the time, and look, my son was going on about her going, “I hate talking to that woman, she just makes me feel like a baby, treats me like a child and just keeps going on about how great she is,” and they did nothing but make him a millions times worse.

Richard says that after six months of “hell on earth,” his son is now fairly asymptomatic.

Anyway so eventually the consultant didn’t know what to do, so he said my son needed this morphine pain control, overnight stays, nothing was controlling this stabbing chest pain he was getting, and I was trying to say “Look, there’s some research coming out, we should try colchicine and a few other things,” because I’ve had good success with that, you know, and eventually it’s only recently, in the last couple of months, he’s had something like that and it actually did help and calm him down, but it’s not a licensed medication, so, you know, I don’t think normal parents with families would be able to access something like that, and it did help calm him down and he’s been fairly asymptomatic for the last month or two. But, you know, over the first six months of the year for both of us were just hell on earth, absolutely horrific. Yes, it was yeah, it’s colchicine. Basically, it’s a gout medication you use for treating acute gout. It’s like a—it’s a powerful anti-inflammatory and there’s some evidence, the last few years of coming out to treat, sort of, pericarditis, heart inflammation, and it’s being more widely used now.

Richard and his son both have Long Covid. He feels psychological therapy would be unlikely to help him and thinks it actually made his son worse.

I don’t think…or this psychology stuff they keep going on about, I don’t think it’s going to help if you haven’t got it, you know, I don’t feel depressed or anxious or, you know, how’s that going to help me. In fact, it’s just going to make me worse, like it did with my son by telling you to have all these meetings and stuff and it just made it worse, you know, Ten times worse. You know, because he didn’t see he had a problem, and in fact, you know, he didn’t want to talk about it, so even with the psychologist he had a good relationship with, wanted to do some sort of like oh, I can’t remember, it’s the brain fog, I’m forgetting the word, to do some treatment for him, and he just felt like, well, it’s not for me, you know, he’s in the sub-scientist academic, sort of, mind and, and he probably just thought, it’s not really for me, I don’t like this, and said, no I don’t want to go anymore, and then, you know, since then he’s been all right.

Richard is concerned that he and his son will get reinfected and have to go through the ‘whole process’ of Long Covid again.

But now we need the treatment because, I mean, and I’m much, much better than I was but I’m just fed up, and so is my son as well. I mean, he’s been really good and that’s why I didn’t to get him involved because, you know, he’s just really started turning the corner and getting him back into school was a major struggle. I mean, he’s at boarding school weekly, so all his, you know, if somebody gets Covid, they’re all going to go, and in September some of the houses had to be sent home because the numbers were so high, so he’s managed to dodge it and we’ve had to keep him back a bit just to keep him safe, because I know if he gets infected again, which is, well, both of us are going to get infected again I’m sure, but we’re going to be out again, you know, for another three months, six months, you know, and then go through the whole process, and that’s what’s the big fear for us at the moment, it’s not that it’s such the acute phase and worrying you’re going to end up on, being on a ventilator or something, but it’s the, am I going to go down that road again and be ill for another year, two years, and also the financial stress of it, his educational component. And it’s not just us, it’s the stress on my wife as well.

Yeah, even for Christmas we’d be, like, you know, we’ve been invited to parties and everything else and had to say, you know, “Can’t come,” you know, I mean, almost we’re running out of excuses if you like, you know, you want to still go well I’ve got, well, we have got the, elderly relative, in-laws coming down so we’re saying they have to, like, you know, shield for them, using that as an excuse not to go, and then it’s difficult for when my children are being invited round for play dates at peoples’ houses as well.

Richard, a doctor, described his son’s symptoms being ignored by doctors or attributed to anxiety.

So I, sort of, went, went to the GP’s and they said, “Well, OK, we’ll see you in the red, in the red zone,” so on we were on week 6, 7, well after Covid and, sort of, felt like we were being treated a bit like, you know, you’ve got the lurgy, but it was like, well hang on, we’re, we’re weeks beyond any illness, we’ve not had an fever, and then the GP was, like, going, “I don’t know what’s wrong with you,” and I said, “Well, what are you going to do about it?” they said, “I don’t know,” I said-, well, basically I had to have a massive go at the doctor and say, “Well, do you not think he’s screaming in pain, you saw him outside, he couldn’t do the, walk for 20, 30 meters to check the oxygen levels,” his stats were, like, 94, 95: for a child they should be, like, 98, 99, “can you not see that that’s wrong? I know it’s still a normal limit but nevertheless he’s screaming in pain holding his chest, are you not worried enough that we need to go to see a paediatrician?” “Oh, I’m not sure; I’m not sure, your ECGs are all fine,” I said, “Well, what’s the diagnosis then?” and he couldn’t give one, so I said, “well, perhaps you should get on the phone to the doctors right now, check the [inaudible] specialist and we’ll go into the children’s assessment unit now.” So, I mean, he did that, and I said, “Well, why can’t you-, can you do something for myself as well because I’m still, I’ve still got symptoms,” and then he never got back to me, so I didn’t hear anything
 
I got a phone call a couple of days later and then a few more phone calls with the consultants and we arranged for him to have an echocardiogram done. So, he had another ECG, an echo, we went back in and that was fine, but when we went back in for that, we saw the middle grade doctor who went through all the symptoms again, told us it was anxiety related. He was a nice, nice guy, very polite and said, “Oh, it’s probably just anxiousness, you’re just getting stressed and worried,” and sent us home.