Family experiences of Long Covid

Evie: I think you know more than anything: just listen, you know? Because you know, I was saying that I needed help and they were just giving the same advice that wasn’t helping me, you know? And I needed...I needed more, and I needed people to really listen to what I was struggling with and—

Mum: Validate.

Evie: —and validate my struggles, rather than just brushing it off as just Long Covid, something that’s going to pass, something that you just have to manage until it’s over. You know like I needed help then. I needed help now, and they were just saying, ‘Oh well, it will pass,’ but it...it might...it will pass, but I need help now because I’m really struggling and I can’t...I can’t manage it on my own, you know?

Lucy: Be mindful that they’re talking to children. Not just with saying how long it might take, but with other things as well like that paediatrician, he talked about my weight a lot and that kind of that spiralled into me not eating for almost a week. So, just not just with delivering things like ’Oh, this might take a really long time to do it,’ just be mindful that they’re talking to children and that they take everything in a certain way differently to how other people might take it.

Interviewer: Can you describe that a little bit more? In what ways do you think it’s different?

Lucy: Like ‘cos you were talking, I’m going to use the weight example. If he was talking to maybe someone else ‘cos he was like, ’You’re gaining weight.’ Every time we went there and he measured me, he weighed me I mean. He was like, ‘Oh, you’re gaining weight and it’s a good thing.’ An adult maybe they might be like, ‘Oh, that’s good. I’m gaining weight. I’m not losing it drastically. I’m healthy.’ But, for me, I’m like gaining weight. I need to lose it. I need to lose weight because I just shouldn’t be gaining weight because that’s how my mind kind of works not healthy, but yeah, just things like that.

Mum: It’s about self-image and things, isn’t it.

Lucy: Self-image. Because teenagers and I would say children, but mainly teenagers, they don’t have a, they’re still kind of developing their self-image. So, be kind of mindful with stuff like that, yeah.

Interviewer: And you talked to me last time about the paediatrician and how he’d challenged when you’d used depression as an adjective to describe how you were feeling, depressed as an adjective to how, how you were feeling. What would you, what would you say to somebody like that about how that made you feel?

Lucy: It made me feel rubbish. That’s why I was so excited, or I wasn’t that excited when I got diagnosed with depression. I, yeah [laughs]. But I was just, I really wanted to say to him like, I do have it. I got diagnosed by someone else because you didn't try hard enough, you know. Like one session with someone and I was diagnosed with depression, and I got loads of things to help with it. And we’d been seeing him for ages, and he wasn’t that helpful. And it was like he didn't believe me at all like, ‘Oh, she’s just being dramatic. It’s fine. Maybe she’ll just need some time off of school. Oh, she’s just hormonal or something she’s going through her teenage years. She might be on her period.’

Mum: That’s how he made you feel.

Lucy: That’s how he made me feel. He made me feel like I was just being dramatic and it’s just growing up when it wasn’t.

Mum: Yeah, I mean, he, for someone who said that it, you can’t use the word ‘depression’ he was the one saying it could be depression or it could be Long Covid [laughs]. Not both.

Lucy: It was just, if anything he said was right, but if I said anything, it was wrong. I can’t say anything ‘cos I can’t diagnose myself with anything. I can’t say—

Mum: I think, in his own way, not to stick up for him, but in his own way I think he was trying to be—

Lucy: I do understand that.

Mum: Make her feel positive.

Lucy: But he did it in the wrong way [laughs]. So, Yeah.

Mum: I think you felt a bit belittled by him, didn't you?

Lucy: Yeah.

Mum: And he would also say about, you know, it’s not, ‘You’ll get better. I basically have patients with much worse things.’

Lucy: Yeah, he compared me to someone who had lost their—what’s it called, mobility. They couldn't walk. And he kind of, he compared their problems to mine like, “Oh, they have it so much worse,” you know.

Mum: ‘You’ll be fine.’

Lucy: You’ll be fine. Which is not something you should say to someone like, I know, but I shouldn’t be comparing myself to someone else’s problems as it’s still my problems.

Interviewer: So, do you think he was trying to give you confidence that you would get better or do you think he just wasn’t able to listen to what it was like for you?

Lucy: It was a bit of both. I think his way of trying to be on the brighter side was just telling me that I was making it all up.

Mum: He didn’t—

Lucy: Well, that’s how I took it. That’s how I felt.

I think treat Long Covid separately to the rest of, like your health history, like example of my mum, they shouldn’t have been like, it’s just part of your normal chronic pain, it’s just increased, it’s normal, maybe just treat it separately even just invite her to come down, let’s look at you and check how you are. A similar example happened with my dad, it was ages ago but it was where something happened to him but they’re like no it’s, he had heartburn, but they’re like ‘No, it’s normal’ and then later after he started like vomiting blood and went to the hospital they’re like you have this bacteria on you, only like people who drink a lot, smoke a lot have, and it’s a rare case and if you don’t come then obviously it would have been more devastating but just because the GP didn’t bother, they’re like oh it’s just normal heartburn, even though my dad like persisted with it.

So, it’s just I feel like they should take it more seriously because I’m applying for medicine so I’ve seen a side they’re like oh a lot of times patients just exaggerate their cases so they can be helped but a lot of times it’s not just that, they’re doing this so they can actually be seen. If I have a cough and I’m exaggerating it then I obviously think it’s really serious and to try and look at it, not be like another issue. The shortage of staff, I feel like that’s the reason why they’re not prioritising properly, yeah.

Mum: Yeah, always been believed right from the outset which was the best thing and yeah, she just, she just listens. I think it’s having somebody to listen to how you know Gracie is, how I’m feeling, and to be fair, out all of these professionals that we’ve seen, she’s the only one that’s ever taken time to ask how I am, which I think’s—

Gracie: Yeah.

Mum: An absolute, I just, I think people are missing, they’re missing so much when they’re just concentrating on the child, I think they need to look at that, about the, the family as a whole and see how everybody else is doing, and I think that’s one area that the NHS really, really, really, really lacks in. Yeah, and I think I find it strange coming from a social work aspect and that’s all you do, that that that crossover would be really, really helpful, you know?

So, I think in terms of questions for the future that’s something that needs to be addressed, people need to be more aware of what this looks like and how it can be similar to other conditions and symptoms but not be those because people could be getting diagnosed incorrectly and suffering in silence I suppose. I think that’s quite important and I don’t know how that would ever happen, I don’t know what conversations happen about Long Covid with clinical people but there still seems to be quite a restriction on what people will tell you and what people are dealing with, like it’s not on the news, occasionally it gets flashed up about, you know, the Long Covid kids have handed a thing into Number 10 but where’s all they medical people, where are the medical people saying that this is what happens and this is what people are suffering and this is a problem.

Sometimes health professionals feel a bit useless when it comes to Long Covid. A feeling of “What can I do I don’t have a cure for this,” but there is actually quite a lot you can do. The first thing you can do is be your patients ally. Be on their side with them through what might be a long illness we don’t know at this stage. And the patient needs to know that you believe them.

And there maybe all sorts of practical things you can do like if they are not able to work or go to college or attend school, they may need documents that enable them to claim benefits or not be punished for that inability. I think some people do find the world quite punitive when they are disabled by Long Covid.

I think the other thing that you can do is to refer, because there are clinics available and there is a growing knowledge, it is growing slowly, but there is growing knowledge of what we can do to help with people who have got Long Covid, so it is very much worthwhile sending your patient, if they want to go, to someone who has expertise.

And I guess the third thing I’d like to say is just “be there”, “be available to your patient” who will have difficult times, may have crisis, may need to know there is someone, even if you can’t do anything, there is someone who will listen.

Well, I think GPs are educating themselves and there’s a lot of GP education going on, but that needs to carry on. I think that’s probably that, you know, more GPs need to be educated following because we’re all seeing it, we’re all seeing patients with Long Covid and that will make a difference. I think the Long Covid clinics are up and running and that’s good. But there, there are things that could change there as well. Some Long Covid clinics go straight to rehab. And without a doctor being involved. For somebody like [son] it would be you know, the, the patient journey would’ve been far better if he’d, you know, if there’d been a Long Covid clinic at the beginning of the year which there wasn’t at that point.

He could’ve been referred straight onto that team via a doctor and then discuss with a multi-disciplinary team of specialists so that we could’ve had the cardiology input and neuro input and maybe infectious diseases you know, a whole range of different specialists who, who could all discuss it as needed, so that we didn't have to wait for all the different referrals which have eventually taken a whole year to eventually get into place very slowly with an awful lot of effort from me and our GP has had to do a lot of referring [laughs]. So yeah, there’s room for improvement and I think it’s you know, they like to say they’re building the aeroplane while it’s flying, which you know, so that it’s evolving and changing as we, you know, all the time.

But certainly, just saying, I’m sorry you’re feeling unwell here breathing exercises and leg exercises or whatever doesn't really help very much if you’re already doing those and accessing our services online. So, what we really needed is some five or six you know, why has he got chest pain? Why is he short of breath? Does he have myocarditis and what’s going on with the ‘brain fog’ and all of the neurological symptoms he has? It’s taken a long time to even find someone who is willing to think about that and getting to find some answers.

Yeah and to hearing someone who’s actually invested—

There, there are some really good people involved now, people I talk to who have gained a lot of experience and are very interested and that’s really good, if it’s a little bit patchy across the country. So, some patients are getting better service than others. And then there’s the wait. So as a GP I’ve referred someone six months ago and they haven't had their appointment yet with the Long Covid clinic, I know she’s struggling at home. And I’m struggling to find the right help for her. So, the NHS I know is little bit broken [laughs] at the moment.

They’re mental health difficulties that have come as a result of the impact of Long Covid, so I do think that...yeah, that those kind of things...I don’t know, you know when you look at Long Covid clinics and services and things like that, that should definitely be part of those kind of services for people.

Like having some sort of mental health and wellbeing support within the team of people who are part of that clinic?

Yeah, like maybe a specialist in CAMHS or an educational psychologist, you know, based on how things are going. You know, some people may not need support. Some people may be absolutely fine, but you know knowing that there would be somebody there that could support, you know I just think that would be massively beneficial. That’s something that I’ve spoken to a few people about actually, where mental health has been quite a big thing, but they’ve not…and I guess we’re maybe similar, not been raised as much, because you...you want the other symptoms kind of dealt with first, and they always come...the mental health comes secondary, but actually I’m not sure that should be the case.

Thankfully, by the time we got to the paediatrics unit, the people at paediatrics unit are absolutely amazing. Have just been very understanding and that kind of thing and I would say easy to communicate with because one of the struggles we’ve found before that was that you couldn't get a hospital appointment. You felt almost guilty taking up time because, you know, the strains that everybody's in and the worst experience we had, without doubt, was being sent to A&E. We kind of knew that as soon as we called 111, we're going to have to be sent to A&E. But having to then put ourselves at risk in a waiting room, full of unmasked people knowing that we could - if we didn't have anything when we did go in, we could be leaving with something worse and having like – yeah, it was horrible, like so horrible that experience.

Was that the time she got the bump on the head? When was that?

No that was at the beginning, that was like back in March. So even though we'd gone through 111 and they'd made like an appointment for her, she still needed to go through the general A&E triage. The setup of the hospital is just not great. So, there are a lot more people than they should have been in there, really. And it got to the stage where I just said, ‘Look we're going to have to wait somewhere else because this guy is literally coughing next to us’ and yeah, we shouldn't need to say any more than that, really. I said why are we here anyway because there is a children's hospital or children's side, could we not go there?

So, there was that and I suppose, the experience is I know that people are learning in terms of Covid and who can be there, who can't be there. It's a difficult one, but I think that was just awful and that put us off actually going to A&E again. So, I totally avoided it, even when we probably should have gone. I’ve just had to be a bit, I suppose clever about how I get her in hospital, and it's basically been like, because I know our doctor's awful. Tried to get an emergency appointment last week and they said, yeah come back in five days. So, I then called the out of hours because I knew that they're more efficient and so via the out of hours, they referred her. It was literally out of hours, got referred to a doctor surgery, the doctors thankfully were just round the corner from the hospital, and we got in straight via the paediatric unit, bypassed A&E, which I think is a good thing. It felt sneaky, but at the same time, then it takes the strain off A&E.