Consultations with specialists about Long Covid

While many of the people we talked to had been trying to manage alone with their Long Covid, or with help from their GP, some had been referred to specialists. In this section we discuss their experiences.

These specialists included paediatricians, cardiologists, neurologists, psychiatrists, fatigue specialists, and specialists from the pain clinic. We asked young people with Long Covid and parents caring for young people with Long Covid about what it was like seeing specialist health care professionals.

Although a few described positive encounters, many described having more negative experiences. A common reported experience, especially for those who were unwell in the early days of the pandemic, was of feeling dismissed or not believed, that “no one wanted to acknowledge” or engage with Long Covid.

Sasha says that she felt no one wanted to acknowledge, engage with or take ownership of her child’s Long Covid. She says she felt “rather belittled and fobbed off for the whole journey.”

Okay, thank you [laughs]. Yeah, so I think the main stressor with the journey, was nobody wanted to acknowledge really, when we’d been into hospital, that Long Covid was a condition that they could engage with. So, my husband and I’m a radiographer and my husband’s a vet, we felt like we had to almost fight for every hospital appointment and every GP appointment, and just say, “My daughter’s still not well.” You know, I think nobody took ownership of her care until very late on in March when we saw a paediatrician in [town].

So, I think we’ve just felt rather belittled and fobbed off for the whole journey with a very, very sick child, and we’ve been given some diagnoses which have been sort of full stops, like functional pain, full stop. You know I’ve been…I managed to secure some contacts through people I know, doctors who have children with Long Covid, and those have been extremely supportive and they’re echoing things that we have said as well, and the Long Covid Kids support group has…this has given me more support than any conventional NHS pathways. So, it’s been really down to us to navigate her care in that way and that’s been the major stress: are we doing enough to nurse a sick child day and night? You know, a sense of not being believed that she was ill, that I was being an overreactive mother, that she wasn’t that sick, when she was [incredulous laugh]. And she’s described as one of the most severe Long Covid cases by the doctors I’m speaking to who have Long Covid children, have acknowledged, and she’s the first one in the [area] to be referred, from the paediatrician we’re seeing, to the Long Covid Hub in [city] and that pathway’s taken a long time…

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Initially, little was known about Long Covid and some of the people we talked to thought that the specialists seemed to be more concerned with ruling out problems and other health conditions than trying to help manage the symptoms of Long Covid. Parents had sometimes been told that children couldn’t get Long Covid and felt that they had to really struggle on their child’s behalf. For those who had Long Covid themselves this was particularly exhausting.

Michelle feels dismissed by doctors. She says it took a very long time for them to accept that her son’s symptoms could be related to Long Covid.

I don’t think they diagnosed him at all, but he had swollen limbs, he had swollen feet, he had a swollen penis, he had swollen things, you know, his swollen lips, you know. I’m…I was a headteacher, you know, and I could see these things, and I’m telling doctors and they’re like, “Oh no, no, no, he hasn’t had Covid.” Well, he slept in bed with two people that have clearly had Covid, so how could he not have had Covid just because he didn’t have the test, doesn’t mean he didn’t have Covid, and, you know, we spent a lot of time fighting that battle and being denied that fact, instead of being embraced and being said, “Well actually, you could have a point here.” You know, and now both me and Vinnie are living with things probably that we shouldn’t have to because we were denied earlier I think. 
 
You know, I think that a lot of what’s going wrong with Vinnie now, is a result of him not being accepted and treated earlier. You know, I’m not a rocket scientist, and I’m not a doctor, but it doesn’t, you know, take a lot to work out that had he have been treated for some of the stuff that went wrong in that early phase, that he might not be suffering what he’s suffering now, you know? 

 

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Richard and Cecilia are both doctors who have children with Long Covid. They talked about trying to access specialist care for their children. Richard, who also has Long Covid himself, says it’s given him a “fantastic insight” into what patients have to go through.

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.

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Beth is happy with her daughter’s paediatrician and felt reassured that someone was actually taking her health problems seriously. As Catherine noted, doctors varied, not least because increasingly some had personal experience of Long Covid in their own family. While Emma said that an appointment with a psychiatrist was one of the most negative experiences of her entire life, she says another doctor was “a lot more compassionate.” Richard praised the cardiologists who saw his son.

Emma A said it felt really awful not to be believed. However, she describes another doctor who was “a lot more compassionate.”

And so, a week after that we were referred to the Long Covid clinic. Ah no, so a week after that the psychiatrist appointment came through and that was just awful. It was really one of the most negative experiences of my entire life, everything I said she kind of twisted the answers. She asked really loaded questions and so, for example, one of the things she asked me was are there any stresses for [my daughter] and I said no, I really don’t think so, I think my child is happy and joyful, you know. She enjoys playing outside, during lockdown we spent a lot of time climbing trees. I really value nature and general wellbeing. Then I spoke to another doctor, proper, I’m stereotyping now, I spoke to another doctor who I presumed was a mother because she was a lot more compassionate and she asked me how I was and how I was managing and she said she knew it was really tough and that the last thing I wanted to hear was that this was going to take time but probably time was the only thing that was going to do.

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Colin says the cardiologist (who had had Covid himself) was really good. He spoke directly to his daughter rather than to him.

So, the cardiologist was really good; he was really good, he spoke directly to Rosie rather than to us. He’d also had Covid himself, so he was able to relate his experience of tastes, loss of taste for example to her and explain that his, at least, had come back, it took a long time, but it had come back. Because that’s one of things that she finds really actually, you know, actually psychologically, I think it’s one of the hardest things because food, mealtimes are just miserable, and, you know, it’s, it’s like pure, and we’re just trying to come up with different things just based on texture: what, what’s at least going to be crunchy, you know, but have some kind of nutritional value.

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Lucy A says that the paediatrician made her feel that he didn’t believe her. The therapist she sees for her anxiety has been helpful.

Lucy: He wasn’t very, what’s the word [laughs]? He wasn’t very nice and I don’t think he kind of—

Mum: I think he was trying to be nice, but he was a bit patronising. He was a bit, he minimised your–

Lucy: He compared me to other people like he said, he was kind of like he was saying I was being dramatic. He compared me to a girl that she had lost her ability to walk. She was in a wheelchair. She was paralysed. And he was kind of, he was comparing my problems to hers. And like they’re two completely different things.

How did that make you feel?

Lucy: It made me feel like I was making it up, even though I wasn’t because I was feeling it. It just, it didn't make me feel nice. It made me feel like if a doctor is saying like I’m being dramatic and stuff and obviously, you know, there shouldn’t be any help. Or something. I just, I need to get a grip. Yeah, he was also quite, he wasn’t really taking into account that I was kind of a child and some things I would take the wrong way. Like when I went there, he had to weigh me, obviously and stuff like that. And he would constantly, like every time he would be like “Oh you’ve gained weight” and he would say it like that’s good and stuff, but it really affected me like the, like he kept saying that I gained weight because every single time like he was and he would say, “Oh you’ve gained weight” every time. And like later on, he was, about a month ago, actually, so it was fairly recent. I tried to starve myself in order to get skinnier because I can’t work out or do anything like that. And his like role in that was quite big because I kept thinking like that I’m gaining weight and stuff. So, he wasn’t great in the fact that, you know, he kind of, he minimised my problems and he contributed to other things. Also, before I got diagnosed with depression, I used the word depressed as like it’s an adjective to how I was feeling when I described it. And he, he would get mad at me every time I used the word depressed. He would be like, “I haven't diagnosed you with depression. You can’t say that.” Like so then we went to—

Mum: A psychiatrist.

Lucy: We went to a psychiatrist and then she diagnosed me with depression.

And so, the therapist, do they understand that it’s part of your Long Covid experience?

Lucy: Yes. She knows that I like, I have anxiety and it definitely heightened because of Covid and Long Covid. But I’ve always really had anxiety. So, she’s helped with that. But she knows that like the depression kind of face of it is kind of based around the Long Covid. So, we trying to fix it [laughs]. I don’t know if that’s kind of the right term, but—

And what sorts of approaches is she doing? Is she trying to give you some practical ways of managing or is it just helpful to talk things through?

Lucy: It’s very helpful to talk things through. I’m very comfortable with her. She’s a very good therapist. She’s really nice. She’s kind of found my way of dealing with things.

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Jake really likes his fatigue specialist and has had a very positive experience with her.

I really, really liked the fatigue therapist. She was really good. Even though I didn't have fatigue, she didn't drop me and helped me work through my sleep and then gave me just some energy plans to help manage my energy and get back to doing the things I love. Cycling, which I admittedly haven't done yet. But hopefully I’m on the path. She was amazing. She was really good. Yes, so and I did five or six sessions with her and I felt so much better being able to get to sleep. Sleep handling tips and so on, melatonin, it was just amazing.

Because she was, she explained everything and she did her and [specialist]– actually [specialist]was really good with that – they both explained it and they tried and understood what was going on. That was just really good. And also, they both gave really good advice that actually helped me when I followed it through. And they were just patient and actually talked it through and didn't drop us, basically. It was just a combination of all of the…that they were patient and kind and talked it through and they actually knew what they were talking about.

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Gracie was impressed when she saw the community paediatrician in 2020. She said that she was really good and “As soon as we saw her, she was like, ‘That’s Long Covid,’” and, you know, so that can take quite a while, but it was really quick and I’m very thankful.

By 2021, specialists, GPs, and the public were all better informed about Long Covid and more services were set up – see Long Covid clinics where we describe the experiences of Long Covid hubs and clinics. As a result of this growing awareness, fewer people we talked to in later 2021/22 felt that they were not being taken seriously although frustration with the lack of treatment options remained.

For more healthcare experiences, see Consultations with GPs.

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