Messages for healthcare professionals about Long Covid

The people with Long Covid who we have spoken to in 2021-22 had often struggled to understand what was happening to them. It was hard to accept that because it is still a relatively new condition, healthcare professionals did not know how to treat it, or even how long it might last.

On this page we focus on what messages children and teenagers, and their parents, had for health professionals. They talked about two main issues:

  • the way that healthcare professionals deal with patients with Long Covid
  • the way that healthcare services are organised

Interactions between people with Long Covid and health care professionals

The newness of Long Covid and its wide range of unpredictable symptoms has left many people with Long Covid living with great uncertainty. They have not known when, or even whether, they will get better. A very important aspect of people’s experiences was the importance of feeling listened to and believed by healthcare professionals.

When Evie was asked what messages she would like to give to health professionals, she said “more than anything just listen.” Lucy talked about being upset when her paediatrician didn’t believe her symptoms were caused by Long Covid.

Evie needed her doctors to ‘really listen’ to what she was struggling with and not to ‘brush her off.’

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?

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Daisy, a teenager with Long Covid, said doctors need to “acknowledge that there’s something wrong.” She contrasted the way ambulance staff and paediatricians had made her feel.

Daisy praised the way that the ambulance staff treated her, but she was frustrated because she felt some paediatricians thought her pain was caused by anxiety.

Daisy: For maybe this…for, like, them to acknowledge that there’s something wrong. Because I think that’s been another sticking point, they’re just…like, a lot of the paediatricians, they don’t know and they’re just saying, “OK, so I can’t…,” like, I don’t know what the exact word is but it’s like—

Mum: Psychosomatic.

Daisy: Yeah, psychosomatic, and they’re just…and they just bring up that, and that’s why we’re going to [city] just to, like…what…do the pain management clinic, and I just think that ‘Yes, all right, that could help,’ but I just don’t really that’s the alley we should be going down, because it strings our anxiety, and admittedly, yes, I do get anxiety, but I get anxiety about school and sometimes when I’m out on a walk.

I get pain a lot or…well, not any more than usual but I get pain out on a walk, and what would there be a reason for me to get stressed when I was out there, you know? And I know when I’m stressed, like, I can work that out, and I just don’t think it…why would I be getting pain there if it was something to do with anxiety?

And I just think ‘Mmm, is this really the right route we should be exploring?’ and I, sort of, feel like it’s sort of…although it’s not like the drugs, I feel it a little bit like the drugs, it’s just masking the symptoms. So, like, yes, breathe and we can do that and stuff because that’s what a lot of them just say just to work out how to breathe and stuff. But I don’t think…I think that’s a genuine problem that just needs to be investigated and just takes, like, the right people to connect the dots and thing, but, yeah, it’s a little bit frustrating.

I sort of feel that the…more so the ambulance people and the blood ladies, they sort of…well, maybe not the blood ladies so much in this case scenario, but I think the ambulance people have more time and they’re more open to different suggestions, where I think the GPs and the paediatricians people are more focused on, ‘Oh yes, it could be a diagnosis,’ but I think they’re always more…or like, welcoming, and just, like, every time we’ve had an ambulance guy round, they’ve always been so lovely, and I feel like they’re the sort of people that…you know, like, they represent the face of the NHS, but I think that doctors and nurses, and stuff, should just aspire to be like them and as open-minded as them, and to also just…I feel like they’re always more chirpy and stuff and they’re more welcoming, because I guess they’re coming into your home, but just, like, although they’re always really nice and reassuring. Because I remember I had this guy, and I was in a lot of pain, but he just, like, kept reassuring and saying, like, “It’ll be alright,” and because I was just cautious because I knew they were busy up there and stuff, and he was like, “Look, there’s other people up there that, like, addicted to drugs or I’ve had other problems like that and they don’t want to get help, and when they go home they’ll just keep taking stuff like that, but with people that genuinely want to get help, we can help them.” And I think they were really good at just, like, quelling fears and stuff.

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Lucy A also cautioned that doctors need to be “mindful” when they were talking to children and teenagers because “they’re still kind of developing their self-image.” She gave an example of the paediatrician talking about her gaining some weight “a lot” and how that was a “good thing.” But this had the effect of making Lucy feel self-conscious and that she needed to lose weight.

Gracie’s mother and other parents wanted doctors to be aware that other family members were also affected when someone had Long Covid. Lindsey, whose child had Long Covid, thinks healthcare professionals should be more open and support people with Long Covid in raising people’s awareness of the condition.

Gracie’s mother appreciated it when a healthcare professional believed her daughter’s experience of symptoms and also recognised that it was hard having a family member with Long Covid.

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?

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Organisation of health care for people with Long Covid

It is known that Long Covid can affect many different bodily systems at the same time. One of the most common things that parents told us about was the need for Long Covid healthcare to be more joined up.

Sara, whose child had Long Covid, said a joined-up approach would help because Long Covid is “so complicated,” and people need “some cross-discipline proper observation.” When Daisy’s mother was speaking about her child’s care, she said “You have to wait so long for different scans when they could all be done at once. You know, surely it’s more cost-effective to have Daisy in for 24 hours, scan everything that needs to be scanned and then come to a conclusion.” She thought health professionals “are working on traditional pathways” but for Long Covid “From what I’ve looked into, we need to be thinking outside the box.”

As a doctor and a parent of a teenager with Long Covid, Catherine recognised how important it is to be seen at a Long Covid clinic early on. She said the service is still evolving “they’re building the aeroplane while it’s flying.”

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.

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Catherine, a doctor and parent, said it was important to be seen at a Long Covid clinic as soon as possible. Beth, whose child has Long Covid, thinks that a multidisciplinary team should include a specialist who could help children and teenagers who have any mental health problems as a result of their Long Covid.

Danie, whose child has Long Covid, agreed about the need for specialist services for children. She praised the staff in the paediatrics unit, and said they were “absolutely amazing,” “very understanding,” and “easy to communicate with.” But Danie also said that it had been “awful” when her child needed to go through Accident and Emergency services at a general hospital.

Danie was frustrated that she couldn’t take her daughter straight to a children’s hospital, instead having to go via Accident and Emergency. This process put her off seeking help.

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.

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For more information on health professionals see Consultations with GPs, Consultations with specialists and Long Covid clinics.

You can read more here about the messages that adults with Long Covid had for healthcare professionals.