Family experiences of Long Covid

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...

But I don’t think...I don’t think we got anything out of that at all. And then we had a phone call with the doctor sort of end January, which is when I got referred to the Long Covid clinic, but I was told that...not to get my hopes up, so...

Why did you think they said that?

I don’t know, she didn’t really seem to think that I would be able to get much support or they’d be able to help that much really, and then I saw my paediatrician around that same time and she was useless—

Was she? Was she somebody that...had you seen her before for something else?

Yeah, yeah, I’ve seen her quite a lot and...yeah, it was just the same thing for every doctor just saying to pace myself and to just keep swimming. I think she even told me like start a blog or something to share my experiences and stuff, but no real support. Because, you know, it’s all well and good telling me to pace myself but when I’m struggling to do you know daily things…

And then, so you missed an appointment with her, we asked if she could not attend because you know, you were unwell, which again is in the NICE guidelines that you know, accept that someone with chronic fatigue and you know, is going to struggle. And we got an email back saying that you just couldn't possibly be spending all day in bed and that’s not what I’d said. I kind of, you know, I gently pulled her up about it and when I said you know, I had read the NICE guidelines and wanted to ask the GP about the things I’ve just asked them about.

She almost kind of accused me of it being like, you know, nut job sort of crazy stuff that I’d learned from Long Covid Kids, and you know, some of those things that are being suggested are from private doctors and there’s no way you’ll get anyone on the NHS to basically prescribe an antihistamine was her suggestion. And then, she said did I think that Jasmine was struggling as much because we’d basically told her about the Long Covid and that basically it was her anxiety and that again it was the message that it was all in your head?

Well, easier to navigate the system you’d have thought it would be wouldn’t you as a GP. Booking his vaccination is easier, but the navigating, accessing care actually wasn’t. And you know, that’s from somebody who knows the system and works in the system and still, I really struggle to get appropriate care for him so it wasn’t really until the sort of private cardiologist in May that we had anybody who was, you know, had listened to the whole story and understood the at least PoTS (an abnormal increase in heart rate that occurs after sitting up or standing) part of it and was able to give us treatment, a proper diagnosis and treatment for that. And then it was August before he was seen in the Long Covid clinic and up until then we’d seen, we’d been admitted three times and had seen quite a number of different consultants and none of those appointments have been very helpful and some of them have been the exact opposite actually.

Not given us good advice such as, you know, you should just get back on your bike when actually you need to pace and that’s a very well-established thing in Long Covid just like in any other overactivity syndrome if you over-exert it tends to exacerbate symptoms. Pacing is really important and a very slow increase in activity when you’re able. But you know, if you suddenly do some strenuous exercise, I think that can cause, have a big detrimental effect and make the symptoms much worse and that’s certainly been our experience.

So, I think, you know, Long Covid is a new thing and that some clinicians are more on the ball with it than others and we’ve encountered both kinds of clinicians. Some have been really helpful and others have not. And that’s with me telling it, speaking in medical language and being able to describe exactly what’s going on, being able to provide blood pressure and pulse readings and some kind of understanding or idea of what’s going on and we still struggle with that I feel. And even with paying for it we still weren’t able to implement the treatment plan we got from that private appointment.

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.

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.

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.