Family experiences of Long Covid
Consultations with GPs about Long Covid
Like others with lasting symptoms after Covid, young people had consulted with their GPs in the hope of some advice, tests, treatment, or referrals to specialists. Here we discuss:
- Accessing care from the GP
- What young people saw as good GP care for their Long Covid
- Advice, treatments and referrals from the GP
- Frustrations and disappointments about GP care
Accessing care from the GP
Young people with Long Covid rarely had much previous experience of accessing care from the GP and were often guided by their parents about whether and when to consult. A couple of the young people we talked to said that they had not consulted a GP but thought that their parents had done so on their behalf.
Claire explained that she did not often call the GP, with whom she has a good relationship, but did so when her son developed the ‘frightening symptom’ of blackened toes.
Claire explained that she did not often call the GP, with whom she has a good relationship, but did so when her son developed the ‘frightening symptom’ of blackened toes.
So, I didn’t seek medical attention other than when William said his throat was closing up. I didn’t seek medical attention for my boys. Well actually at one point I rang the GP because Thomas’s toes were really blackening, and I was, again it was late on a Friday and I was concerned that he might lose them, I mean I was like, “Should he be taking aspirin? Should he be elevating his feet? What should…?” And again, the GP said, “We just honestly don’t know.” And I was like, “At what point should I go to A&E?” And she said, “If they feel cold,” as in getting the circulation then at that point. Because I mean I know now that some people are having their toes amputated because of Covid toe, and I didn’t know that then.
And so yeah, James, because I knew they couldn’t help me even though I literally, I was dying a couple of times, I knew that there was no point in seeking attention for my children. I knew that no one could do anything. So, we just basically rested and rested and rested, yeah, so I’ve never had a symptom free day, at all. And but William and James sort of relapse and remit, and Thomas is, thank goodness always felt fine, so his toes just kind of stayed an alarming shade for lots and lots and lots of months, but didn’t seem to do him, you know, kind of cause him any bother.
Ben, a 14-year-old, noted that the GP talked more to his parents than to him. Kiran had not needed to see the GP because her symptom flares tended to only last for around a day.
Parents were sometimes at a loss about where to get help, especially when, as Lisa explained, her 17-year-old daughter was ‘on the floor.’ The GP practice was closed and although a paediatrician was involved in her daughter’s care, she did not know who to call.
Mehjabin is a young carer for a parent with Long Covid and described the difficulty of trying to get care through eConsult and feeling bounced between 111 and A&E.
Mehjabin is a young carer for a parent with Long Covid and described the difficulty of trying to get care through eConsult and feeling bounced between 111 and A&E.
I think for her it’s just mainly been really annoying, it’s just even for us as well because say she has a new pain propping up or there’s something next, she has a new joint pain that came out of nowhere and she really wants to talk to her GP about it, you couldn’t get them on a phone call, and you use the eConsult system. But then we knew when ask about symptoms and we just take something, like no call 999 straight way you can’t proceed further with this GP service. So, then we would call 911 first because we didn’t think it was life-threatening immediately, but then I think one time they [911] referred her to 999 and they came and they’re like what’s so serious about this, you should have just gone to the GP, so just in the end the GP referring us to A&E, and A&E referring us to GP, and nothing was happening in between. That was annoying for her, like you spend a long time trying to get like the message across and nothing’s happening.
Some people, like parent Diane, were reluctant to talk to their GP about some symptoms as they were concerned about wasting the GP’s time.
Diane had not spoken to the GP about her loss of taste, as she didn’t think it was ‘serious enough.’
Diane had not spoken to the GP about her loss of taste, as she didn’t think it was ‘serious enough.’
No, because it’s a kind of, it seems a common thing and I’m not quite sure what they would do, I think they would just suggest doing the smell test and the taste test as well, so you know, I’d heard from, you know, my advanced nurse practitioner friend, I spoke to GP’s and I haven’t really had any need to go, I think I would be time wasting to go and talk about my relatively little symptoms, I know it’s a big deal to some people, but you just get on with it, really. I haven’t got time to do it, plus I don’t think it’s serious enough to go to the GP and ask for a referral to somewhere. That’s not, it hasn’t really affected me that much.
What do you think would be serious enough to go and see a GP about?
Well, I think if, if you know, I know people who’ve had, you know, like chest pains and palpitations and on-going cough and, you know, persistent headaches and things like that, I think if it was more pain-related, or unusual or more frightening symptoms. I think then I, you know, then I would go to the GP, but I don’t think for my symptoms I’m fairly back to normal, I am back to normal, and I don’t think I need to go to a GP.
Shakila, a parent with ongoing Covid symptoms, had found it really difficult to see a GP in person. Although she was interviewed in June 2022, she thought this was because face-to-face appointments were not being allowed due to the pandemic.
Shakila hasn’t really been able to talk to a doctor about her symptoms. She says they are ‘not interested’ in Covid and prescribe paracetamol. She has stayed home for much of the past year.
Shakila hasn’t really been able to talk to a doctor about her symptoms. She says they are ‘not interested’ in Covid and prescribe paracetamol. She has stayed home for much of the past year.
So, have you been able to see a doctor or someone about your own symptoms?
You know, the doctor no see you. Just by phone, telephone calls. So, whenever I tell him my symptoms what I’m feeling, they keep for you the medicine, the pharmacy. You collect from there. No one sees you.
Okay. So, you haven't talked to a doctor face-to-face about how you’re feeling?
No. You know, now you can’t see your doctor, since the Covid, you don’t meet a doctor.
Okay. Yeah. And have you been able to explain to them over the phone how you felt?
Yeah.
What have they said about that?
I have a back pain, leg pain, this pain. They give me medicine on that.
Okay. Yeah. And has anyone said to you, this might be because of Covid?
No. They not interested in all these things about Covid or no. Whenever I have a pain, I call they say, “Oh, we left for you the medicine at the pharmacy go take it.” About the Covid, I had a Covid, I call the 911. So, they helped me. They say, “You have to go test it.” I test positive. So, I know what I have to do at home. I stay at home more than how many days I stayed home, more than fifteen days at a time. And more I stay at home because I was not that much recovered. So, two months I get fever, the same symptoms. I know this Covid come back again. I do the same medicine. I stay home. So, last year, I’ve been home, I’m home always. My friends they bring food and I give them money. They buy for me. They leave the house outside the door just you know.
And so, even now, when you are still getting really cold or maybe fevery, tired, you know, really, really tired and low energy, the doctors aren’t listening to you about that?
Just go buy the vitamins. Doctor will not give me vitamins. I have to buy vitamins and I have to eat nice food. I have to, I have to do not what they do for you. Even if you don’t eat, if I call they say no appointments. I have to do online booking. They will answer me after two days and doctor will call you after one week. So, that is stressing, you know. If you tell him he will give you medicine, antibiotic, or go buy he’ll tell you. I mean, vitamin go buy he will tell you. So, it’s better I do it myself. Buy things that make me strong.
What young people saw as good GP care for their Long Covid
The young people we talked to, and their parents, often described their own GP as ‘lovely,’ ‘helpful,’ and ‘trying to do their best.’ Those who had a GP who was sympathetic and (importantly) appeared to believe them when they explained how they felt, often described feeling that they had been ‘lucky’ with their care, compared to other people they had heard from in the media or in support groups.
Hannah described her lovely GP who listened, was helpful, and never made her feel as if she wasn’t believed.
Hannah described her lovely GP who listened, was helpful, and never made her feel as if she wasn’t believed.
And then my GP, I've seen a lot of GPs, but she’s the same one that my mum told me to go to and she is absolutely amazing, she’s so lovely, and has like really listened and like just been really helpful and not made me feel like...that I'm making it up or like it’s not as bad as it is or like, ‘Oh, just...we'll refer you to like a...it’s like a counsellor or something,’ Like she’s like listened to the fact that I am knowledgeable and I have...I am going to therapy and like I have been on certain antidepr—I’ve been on sertraline before, and so she sent me information about different antidepressants, and obviously like when I...like I've learnt about antidepressants before, but it was just helpful to the fact that like I've learnt about them in a way that I've got to recite the information and do it in an exam and never learnt about them in like, ‘Oh, I'd actually be taking this and like the effects of it actually have on my body,’ so it was just really helpful like all of that, and she was like thinking about other things that would help, like I used to struggle with sleep so she merely suggest you going on the antidepressants that make you a bit drowsy, but yeah, so I think everyone I've seen has been really amazing.
Amal said that she had a good explanation from the GP and understood that she would just have to rest and take time to recover.
Amal said that she had a good explanation from the GP and understood that she would just have to rest and take time to recover.
So, have you seen any other doctors or health professionals about the postural tachycardia syndrome?
No, it was just like a GP I’m pretty sure, that’s it because they explained it pretty clear - they explained it like pretty well, they were like it’s going to take time to heal, like it's not something for you to be too worried about, but they were like be careful, you know. Don't do anything too hard whatever. Like, okay, that's fine. They explained it pretty well, so they were very like helpful during that time, yes.
Young people and their parents wanted to know that appropriate investigations and referrals had been made and appreciated GPs who took the initiative, followed up on referrals, and checked in on how they were managing.
Gracie’s mother Claire said that they have a ‘fantastic’ GP, who was the only professional who checked in on how she was managing, as the mother of a teenager with Long Covid.
Gracie’s mother Claire said that they have a ‘fantastic’ GP, who was the only professional who checked in on how she was managing, as the mother of a teenager with Long Covid.
Gracie: [GP] is massive. Basically she does my blood, doesn't she? That’s how I found out I had my iron thing, the iron thing.
Mum: Yeah.
Gracie: The iron, and what else does she—?
Mum: Well, she just...
Gracie: She measures me.
Mum: She’s the one who originally referred, we’re into community paediatricians, but yes, so I was seen there and everywhere else but for everything to do with it that’s not anything that comes under them umbrellas, if you like, she’s just—
Gracie: [mm]
Mum: —she’s just really, really good. We’ve got a really good relationship with her. We can ring her up for anything and she always is at the end of the phone, isn’t she?
Gracie: Yeah.
Mum: Yeah. Yeah, she’s, I mean, you know, she’s seen me at my worst. She’s, you know, she’s seen me in floods of tears when you just get so frustrated...
Gracie: So has [psychologist], she’s seen me cry.
Mum: Yeah.
Gracie: And I hold it together really well and then I just roar, because I hate to talk about me all the time—well, I don’t really hate to, but it just makes you, makes you upset because you won’t settle.
Mum: But no she’ll, so she’s been absolutely fantastic, we couldn't have asked for better really.
Gracie: Yeah.
Mum: We’ve been very, very lucky having her.
…yeah, always been believed right from the outset which was the best thing. And yeah, 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 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?
While everyone wanted an explanation and a treatment for Long Covid, people recognised that GPs did not yet know how best to treat the condition. Some parents, like Deidre, acknowledged that the GP had a very difficult job when new information about Long Covid was emerging slowly. The GPs who saw Jasmine, and also Jake, explained that there was still so much that was unknown about Long Covid. In the meantime, while waiting for better evidence, help with managing symptoms such as pain and insomnia was needed and appreciated, when it happened.
Sally and Ricky’s young daughter complained of a ‘bumbly tummy’. They found it challenging to know whether their young daughter was experiencing Long Covid symptoms, as she couldn’t voice her feelings like an older child.
Sally and Ricky’s young daughter complained of a ‘bumbly tummy’. They found it challenging to know whether their young daughter was experiencing Long Covid symptoms, as she couldn’t voice her feelings like an older child.
Sally: Yeah, she’s, she’s normally a very smiley, happy little thing, but she gets, yeah, quite upset with it at the same time. So, we don’t know what’s going on. Yeah, it’s hard to tell, ‘cos—
Ricky: Sometimes actually tired.
Sally: She always complained with a bumbly tummy at the same time. But I never know where she’s got that term for or whether she just uses that term for not feeling quite right.
Ricky: No, she has said, a bit bumpy.
Sally: Bumpy.
Ricky: Bumpy… but okay. But yeah, I think she, almost like when she gets overtired and was ready for a nap. She gets a bit whiney and you just, you just know she’s not right, but there doesn't, doesn't physically appear anything, apart from the, the red face doesn't appear physically anything you know, temperature wise and anything like that that’s anything to be concerned about.
Sally: Yeah, sometimes it does, sometimes it doesn't.
Ricky: Yeah, yeah. It’s, it’s a strange one. I think it’s probably you notice it, you don’t normally notice it first thing in the morning. It’s more later in the day. You probably say like lunchtime onwards. So, maybe as she gets more tired, naturally it just starts to present itself a bit more.
It’s a curious one.
Ricky: Yeah, but I think, if you think about Daisy, as much as she has this rash, you just don’t know, she can talk, she speaks. But, she can’t necessarily articulate when she’s saying to you you’ve got a bumbly tummy or whatever.
Sally: Yeah, we have no idea if she has any other symptoms.
Ricky: You, you don’t know, you know, going forward is that a bit like ME the chronic fatigue. Is she gonna be affected by that in the future. It’s hard to know. You know, it’s something you worry about. You hope they’re young enough in their immune system’s developing enough to not be affected. But you know, it’s still a fairly new disease ‘int it, so we don’t really know until it manifests itself in a few years’ time. I guess, for us, it’s a difficult one ‘cos we’re, well, we’re not old parents, but we’re older now and if we had that sort of weird smell thing, I do slightly wonder, you know, it’s not like I can’t do anything because I’m so, got chronic fatigue or something. But I guess the bit being I wouldn't know anyway, because I’d be tired anyway and so it’s, it’s hard having kids as you can imagine. They’re good fun, but they’re, they take a lot of your time up and generally are tiring. So, anything else like saps your energy, would, wouldn't be welcome. I wouldn't, I wouldn't say it’s a thing that keeps me up awake at night. But something we think about.
Advice, treatments and referrals
In the early days of the pandemic there was uncertainty about whether Long Covid could affect children. Young people we talked to, including Evie and Amira, were told by their GP that they would recover soon and were often advised to rest, take things easy and use painkillers to help control some of the symptoms.
Ben was expecting a quick recovery which didn’t happen.
Ben was expecting a quick recovery which didn’t happen.
Yeah, they thought we’d get better very, very quickly and it will be all fine, and about...they thought we better by June, July, and that would be it, but I continued to really have it through the summer and then when it came to September again, to start the new school year, I’d still have...and I was still really, really bad with it.
And when you spoke to the GP about it, do you feel like they were helpful, did they know what to do, did they think it was Long Covid or did you have to tell them what you thought it was—?
At first I didn’t really think it would be bad and it wasn’t...They didn’t think kids could have it at first, they didn’t know, they just thought adults could have it, so they didn’t really know what to do at the start and they...I don’t think they were very helpful trying to solve the issue but I don’t think they really knew what to do with me to be honest, because they didn’t know if kids could get it, they didn’t know if it was Long Covid or not, but when it kept going on and more research kept happening, they knew kids could get it, and then...yeah.
I think they more talked to my parents about...I don’t think they really understood what was going on with me to be honest, I don’t...I think they just thought it would get better really quickly, they thought it was fine, I didn’t really need to be prescribed anything really or need to...or need to be helped in any way. I just thought we’d get better and that would be it, but they didn’t really talk to me personally [sighs], they just more talked to my parents and tried to resolve it and it didn’t get resolved.
Was that okay with you or would you have preferred they had talked to you?
I prefer they tried to go, yeah, more direct and just try to do some more tests really, try to prescribe something because it was...it was affecting a lot; like my sleep, the headaches was increased, I was getting joint pains, so if they’d prescribed something for any of those, that could have helped a bit, but they didn’t, so I would have preferred they would have tried to...tried some, something like that, or tried some kind of treatment.
What did they tell you to do or was it basically, ‘We don’t know’?
Yeah, “We don’t know.” Just really rest and you can stay out of school, but you've got to just rest, but they didn’t really know what else to prescribe to me, they just said, “Rest,” that’s it, “We can’t...we don’t really know if we should give you medication, we don’t really know if we should prescribe something like acupuncture, we don’t know what to do with you; just rest.”
Because she could barely function at the time, the advice to ‘pace herself’ left Evie feeling that her experience was not being heard or recognised.
Because she could barely function at the time, the advice to ‘pace herself’ left Evie feeling that her experience was not being heard or recognised.
I think we’ve spoken to maybe three or four doctors over the course of the past six months and I’ve not received, really, any support; it’s just been the same thing of saying to pace yourself, you know, just keep swimming, just keep going, it will be over soon, and it...and you know things like that, it’s...I’ve not had...that’s just the same sentiment that’s been...that’s come out of every single appointment that I’ve had and it just feels sort of invalidating of my experiences because it’s so much harder than just pacing yourself, you know when the—
So when you say ‘invalidating,’ do you feel like they just don’t understand what it’s like for you?
Yeah, yeah, I think so. Because you know, it’s all well and good to say to pace yourself, but you know when I’m struggling to, you know, shower, to get dressed in the morning, you know let alone getting to school and things like that, it’s like completely useless advice because I need...I needed more support than that, and I needed better advice and I just needed more because I just couldn't function anymore.
Others were given inconsistent advice about whether or not it was a good idea to pursue sports or graded exercises.
The nature of the advice from GPs and the investigations they ordered varied considerably. For example, Amira was told that she would get better on her own while Daisy was repeatedly sent for blood tests that were never conclusive. This variation in investigations was probably influenced by the nature of the symptoms and how unwell the young person was but is also related to the state of emerging evidence on Long Covid and how much support, time, and energy they (or their parent) had to pursue investigations and referrals.
Lucy A says the GP took the Long Covid seriously and made referrals to both a psychiatrist and a paediatrician.
Lucy A says the GP took the Long Covid seriously and made referrals to both a psychiatrist and a paediatrician.
Mum: It wasn’t until like April 20-, it was after they’d gone back to school, after the lockdown in 2021. So, when we really, really noticed the fatigue kicking in, after she’d been back full time for a couple of weeks, that’s when we went to the GP. I’d started reading up about Long Covid and thinking well, hold on, that fits, that fits. She’s got that too. So, I actually rang the GP and said, ‘Could this be Long Covid?’ She said, ‘Yeah, it could be.’ And then she brought Lucy in for some blood tests and a chat and she did a physical on you, didn't she. And then, that’s when she decided, she said, ‘I’ll refer you down both routes, the psychiatrist and the paediatrician.’
Interviewer: Okay. Thanks that’s helpful. So were they helpful? Was that a phone consultation then mainly, rather than you seeing them directly?
Mum: Initially, it was a phone conversation with just me. Then she did see Lucy.
Lucy: She was really nice.
Mum: She was lovely. And in fact, actually, we went, I went back to her a couple of months ago after we’d seen the paediatrician and decided we didn't really want to go back to him because he seemed done with her. I went back to her and I said, ‘Is there really no, you know, can you...?’ Because I’d asked her to refer Lucy to a Long Covid clinic. But she’d told me that there was no paediatric clinic, locally and weren’t allowed to refer out of area. That was back in, you know, last year, I think. And then I went back to her a couple of months ago and said, ‘Can you still not refer her to a Long Covid clinic?’ And she went away and looked into it and found out that our local adult clinic was taking paediatric referrals now. I think she put it before the local committee or something that was meeting that day and they came back to her and said, yeah they’d take the referral. So, Lucy was referred and we had our first appointment with them last week.
People we talked to understood that GPs were often ordering lots of tests to rule out other potential causes for the symptoms, including heart disease, lung disease, and cancer. This was sometimes well-received but could appear unhelpful if the young person or their parent felt that it just delayed recognition of Long Covid.
Deirdre felt that the GP had initially ‘pooh-poohed’ the suggestion that her child might have Long Covid but accepted it after doing lots of ‘scary’ tests.
Deirdre felt that the GP had initially ‘pooh-poohed’ the suggestion that her child might have Long Covid but accepted it after doing lots of ‘scary’ tests.
Well, my own GP, she pooh-poohed it at first and kind of said, ‘Oh no, children don’t get Long Covid.’ And I said, ‘No, I can assure you children do get Long Covid. And with all of [older daughter]’s symptoms, I think that’s what it is.’ And she said, ‘Well, I need to, as a doctor, I need to test. I do lots of different tests.’ She had tests for cancer. She had tests for, you know, it was horrific time, which obviously it all came, thank God, came back clear and everything. And she then said to me, ‘I think you’re right. I think she’s got Long Covid.’ Mother’s intuition.
Teenagers had sometimes been referred to a paediatrician, a children’s hospital, or a specialist paediatric Long Covid service. Waiting times for referrals varied and some parents who could afford it paid for tests to try to speed things up or consulted privately.
Her GP was not very helpful but Eleanor managed to see a doctor who specialised in Long Covid via a contact in her church.
Her GP was not very helpful but Eleanor managed to see a doctor who specialised in Long Covid via a contact in her church.
Mum: I had a phone consultation with the GP—
Eleanor: Yeah.
Mum: —who wasn't particularly helpful, at all. But then coincidentally we actually knew somebody from a long time ago actually, from our church in [city], who had also moved to a different area and he was working as a doctor specialising in Long Covid and chronic fatigue syndrome, so we started seeing him.
Interviewer: Okay, and can you tell a wee bit about what that’s been like, you know, what’s it like being seen by him?
Eleanor: It’s been good and he’s like recommended like all like vitamins and tablets that I've been taking, and things like acupuncture. So, I've been...I've gone to lots of...I've been doing lots of that, so I've had them in like my arms and my legs and my head one time. And I feel like that kind of helped a bit with the headache but it’s still there, and I'm still now still working on to trying to get rid of it.
There were also regional differences in the availability of paediatric Long Covid clinics. Although there wasn’t one available in their area, Lucy A’s GP eventually managed to arrange a referral to an adult Long Covid clinic (also see Experiences of ‘Long Covid clinics’).
A doctor speaks - Helen Salisbury discusses when to see your GP
A doctor speaks - Helen Salisbury discusses when to see your GP
Some people don’t go and see their GP because they think “Well what can they do I’ve got Long Covid and there isn’t a cure.” I would like to encourage people with Long Covid not to lose touch with their primary care doctor, that’s their GP, because well you need to have someone who’s looking after you, and particularly you need to see somebody if your symptoms change, if you get more breathless, or you start having pain. Its really important to make sure nothing new has happened. It is quite easy when you are feeling so ill to say well its just the Long Covid but actually you can’t be sure always, so it is worth checking out any new symptoms. And even long-term symptoms like fatigue if they are getting worse it is really worth ruling out other causes, you might be anaemic for example and that is quite easily treatable. So don’t think there is nothing that can be done because there are things, and your GP will want to see you.
Frustrations and disappointments about GP care
Young people were often surprised that the care system seemed inefficient and not joined up. Daisy and others did not understand why GPs could not access tests that had been done in other NHS settings. Lucy was amazed that, during online consultations with GP locums who were working remotely, they had been unable to access her notes. Rosie and others also expressed frustration and found it exhausting to see someone different every time and to always have to explain everything again.
Megan found it too hard to explain how she felt to her GP or psychiatrist.
Megan found it too hard to explain how she felt to her GP or psychiatrist.
I think my mental health deteriorated quite a bit. Like I’ve never struggled with depression or anything like that ever before in my life. And so, I didn’t know what was going on, because I sort of, I was just in this sad…I don’t even know how to explain it, because I’ve never sort of been through anything like it before. But going out with friends, I just didn't want to be there. I just wanted to be at home, in the comfort of my own home. And even going to work, like I just sort of had this breakdown, whereas I, I couldn't explain it. I couldn't tell anybody what was wrong. I just, for the life of me couldn't stop crying some days. It was weird, very, very weird. I went to the doctors. They weren’t too great. They sort of said, “Well, what’s it for?” And I was like, “I don’t know. That’s what I’m asking you for help.” So, obviously they weren’t so great. But they haven't had anything to sort of help them to, if that makes sense.
No, they gave me a number to call about depression/anxiety and anxiety and then I sort of, I sort of rang it and they wanted to know about my life story, and I was like “…but everything’s fine.” I sort of went through my life and they were like, “So, why you like this?” I was like, “I don’t know.” I was like, “Nothing’s changed in my life, like everything’s still the same as it was. I still have great friends and still have—I enjoy my work. Like nothing’s changed.” But just feeling like this which is making me not want to speak to my friends. Not wanting to go to work so, it was, bizarre, very, very bizarre.
Yeah, so I sort of tried to explain and, at this point, I was quite bad, so I was welling up more and well, I started crying. I was like and he sort of kept asking me, “Well, why do you feel like this?” I was like, “Well, I don't know, that’s—” And he sort of just like brushed it off as if, not, he’s probably a nice doctor, but I felt like he just, because I couldn't tell him why I felt like this, he didn't want to know. He was like, “Well, if you don’t know, I can’t help you.” If that makes sense.
Yeah, I don't know because I knew there was because my friend [name] has, works at the hospital and I knew she’d been put through to a Long Covid treatment centre. So, I knew that he knew there was something out there. So, I don’t know if he just brushed it off or he was having a bad day. But I just felt like he didn't want to help me and that sort of why I came home, and I just didn't do anything else after that. I was like, “Well, if they can’t help me nobody sort of can” [laughs].
Another frustration voiced by some of the young people was the feeling that they were not being taken seriously by their GP, were not believed, or that stereotypical assumptions were being made about what had caused the problems.
Jasmine felt that the GP was simply not listening when they suggested that the reason she had insomnia was that she was reading her phone at night.
Jasmine felt that the GP was simply not listening when they suggested that the reason she had insomnia was that she was reading her phone at night.
That would’ve been August, September 2020. I went to the GP because we’d been, it’d been a while and I still didn't feel well. And yeah, I found it, I go through stages of finding, if I don’t sleep very well and find it hard to get to sleep or stay asleep and so sometimes, I would read like books on like a Kindle app or read at night. And I didn't, I had the light right down because I know about blue light. But, yeah, they were just…they said it was because I was reading at night because I was on my phone.
And pretty much blamed all of my symptoms to that fatigue and everything and all of the symptoms because of reading on my phone and yeah, they did refer me to the paediatrician, but I mean that was August 2020 that Long Covid wasn’t spoken about like at all. I think some people like suspected it. But, yeah, it wasn’t really acknowledged.
Not everyone who had Covid ever had a positive test, especially in the early months of the pandemic. School children started to be tested regularly from Autumn 2020 but those who had been infected earlier had often not been tested. There were some frustrations when services asked for confirmation of a positive Covid test. For example, Rosie was referred to a physiotherapist who insisted that if there was no positive Covid test, there could be no Long Covid.
Some parents said there had been confusion about referrals to hospital and specialist clinics when the procedures were relatively new and staff weren’t familiar with the forms. Catherine said the GP, the paediatrician, and the cardiologist had all been reluctant to prescribe her child a medicine used in hospital care.
Feeling that they knew more than the GP about Long Covid was another source of frustration, especially when the GP seemed reluctant to listen to their experience and ideas. Richard is himself a doctor and was distressed to hear about his son’s experience of seeing a GP.
Lastly, it was of course disappointing that, as a newly emerged condition, there was a limit to the help that the GP could offer. Felix commented that it was nice that people were trying to help but that there wasn’t much that anyone could do, and Jake said that the GP was okay but just didn’t really know what to do. James‘s mother also had Long Covid and after her experience of going to the GP, they concluded there was no point in him going as well.
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