Family experiences of Long Covid
Long Covid clinics
This section explores children and young people’s experiences with accessing specialist Long Covid clinics. These included both virtual and in-person clinics. They often involved a team of clinicians, including physiotherapists, occupational therapists, psychologists, and sometimes a paediatrician or other doctor.
This section includes the following topics:
- Challenges accessing Long Covid clinics
- Experiences of the Long Covid clinic
Only a portion of families we interviewed had attended a Long Covid clinic. Many said they had experienced difficulties getting a referral to a clinic.
Challenges accessing Long Covid clinics
Although Long Covid clinics for children were set up in June 2021, they were not available to all families across the UK. This lack of coverage made it difficult for some families to get appointments. When we were talking to people for this study (2021-22), there were no Long Covid clinics for children in Scotland, and while there were Long Covid clinics in Northern Ireland, it was unclear if they would be available for children.
Colin was concerned about the lack of specialist care available for his 16-year-old daughter in Northern Ireland.
Colin was concerned about the lack of specialist care available for his 16-year-old daughter in Northern Ireland.
So, the Health Minister announced there would be Long Covid clinics operating in Northern Ireland from—leave aside the fact that peoples’ experience of them in England has been really mixed, right, leave aside, just park that fact that even when do get it going, it may be shit, right. It was announced they would operating from the 1st of November, but I’m hearing from the woman, directly from the woman who will be delivering the service to my daughter, that she still, at this time, in the middle of December, practically Christmas, doesn’t even know if the service that she’s trying to line up and deliver has even really been commissioned or not and won’t be able to tell me until January, and maybe in January won’t be able to tell me either, what? Like how are you, how is anyone supposed to function with that? You know, what do you do? And, and in fact, one of the lines that Rosie wrote in her in her letter was, you know: "My dad has been told that there’s nothing for under 18s, does that mean I have to wait until February 2023 before anyone will try to help me?" You know? Because that’s when she’ll be 18. She’s just supposed to rot until then. It just, it leaves me speechless actually, to some extent.
So even leaving aside all of that, I do know, because one of our friend’s daughters goes to gymnastics with a girl whose mum is a rheumatology person and she’s doing some sort of stuff with people, with adults, but she said, “Look, don’t hold your breath because it’s crap what we’re doing, you know, we’re not doing really help, we’re just advising on management and stuff,” which is, kind of, what I’m expecting, but, you know, you just think is this, given, given the mass level of disability that is being unleashed on our population through a, frankly, criminal policy of not protecting children properly, I think at the very least you would try and ensure that you could provide some kind of care; some kind of care for them, having not protected them when, when you sent them to school. But no, you know? So…
The families we spoke with felt that the burden was often on them to find the clinics in the first place, rather than their GP suggesting a referral. Daisy (14 years old) said that she and her mother had tried to get referrals for a Long Covid clinic, but that her doctors had said, “We don’t know how you could get access to them.” Daisy felt that her family “had to do a lot of digging ourselves.”
Families also reported feeling as if it was up to them to maintain contact with services so that they didn’t get ‘lost in the system.’ They described this as a ‘battle’ to get to the right people and eventually get an appointment with a Long Covid clinic. Lindsey recalled, “We’ve been referred to that, but we don’t know where that referral’s gone…it’s probably something that we need to push again.”
Colin and Jana both expressed frustration at having to coordinate their children’s care pathways themselves, making sure that referrals had been made and being on top of things. Colin reflected that he would have found this almost impossible if he had had Long Covid himself.
Colin had to ring several different people in his local trust before finding someone who could tell him about the upcoming Long Covid service for children.
Colin had to ring several different people in his local trust before finding someone who could tell him about the upcoming Long Covid service for children.
And, you wonder—I mean, we can’t cope with what the number that we’ve got already because we still don’t have a Long Covid clinic…I checked yesterday again with the woman who is supposed to be providing the service for Northern Ireland or our Trust area, and I got, I’ll actually read you what it says, because I got this email back from her. She was very sympathetic on the phone, very nice, but so her first email was: "I can confirm I have Rosie’s referral to the Post-Covid Syndrome Service; it was received on the 1st of November. As discussed, I have been, and will again, following your call, seek an update in regards to under-18-year-old provision and will come back to you, please find some information attached and an app."
Right, some information about self-management and fatigue, okay: "I understand how distressing the condition is for her and for you and the challenges you are encountering trying to access appropriate services." Now, to get through to her I had to battle my way through the outpatients’ people at our local hospital, who then told me, “Oh, no, we’re not doing them here, you have to ring the other hospital that’s in our Trust area.” I rang them, they had no idea in what they were, they had, they didn’t know what, why was I ringing them, “Don’t know anything about that, sorry.” And they found somebody who was working on, in some, like, I don’t know, like, breathing hub or something, I don’t know, like, respiratory recovery type thing, “Oh, you need to speak to them.” So, I spoke to, you know, eventually got through to somebody there and was referred to another place, and they got through to this lady who will be, in theory, delivering this, the paediatric Long Covid service for our area, but I know several people now who have Long Covid and have real trouble. I’m, you know, I have post-graduate level education. I work in government, I’m used to dealing with, extracting information in difficult ways, right, but, you know, and I have that good, sort of, persistence, but if I had brain fog and fatigue and all of that stuff, there’s no way I would have managed to get through that.
Jana had to coordinate her 12-year-old son Samir’s appointments and referrals herself, with little progress from the hospitals.
Jana had to coordinate her 12-year-old son Samir’s appointments and referrals herself, with little progress from the hospitals.
Only when I rang the paediatrician last week, I spoke to them, to his secretary, you know, “When is going to be the appointment?” she said, “Well, we don’t do it in our hospital,” I said, “Did you tell them that you can’t do it because they ask you to organise it?” And it was only yesterday I received a letter that they actually informed them back that they can’t do it after...and I'm thinking you know, ‘How much time do you need to read a letter and respond to it?’ So, it’s all down to us now to coordinate and keep an eye on you know, are you doing what you're meant to do, which...yeah [chuckles].
Parents described feeling as if they had to ‘prove’ the seriousness of their child’s situation to be granted a referral. This was distressing and required a lot of additional time and effort over phone calls and emails. Emma B. said, “Our experience with the Long Covid clinic after a long, long wait and lots, probably over 20 hours of phone calls was horrific, not one I enjoyed.”
Michelle had to explain her family’s story over many emails before they were taken seriously. She said the GP had been resistant to the idea that children could get Long Covid. She also has Long Covid herself, which made navigation of referrals and appointments for her 4-year-old son Vinnie much more difficult due to her fatigue and brain fog.
Michelle thinks that some doctors don’t believe that young children can get Long Covid. She said she struggled to get her GP to believe her child was experiencing it and refer her son to the Long Covid clinic.
Michelle thinks that some doctors don’t believe that young children can get Long Covid. She said she struggled to get her GP to believe her child was experiencing it and refer her son to the Long Covid clinic.
I went back to [doctor] and I said, “Look, can it be feasible...” because the... Vinnie had been taken into hospital in June and they kept dismissing Vinnie’s Long Covid as well, and I just wrote him an email and I said, “Look, I want you to just stop for a second and accept the fact that isn’t it feasible that, you know, if I’ve got Long Covid, that Vinnie can also have Long Covid, you know, just for a second, can you just contemplate it?” and he must have, like, read my email as well and gone, “Well, actually you’ve got a point.” And I sent him a video of Vinnie’s seizure and... but it’s had to be done through email, I couldn't do it... and the eConsult system doesn't work for me because it... every time I tick the box, it sends me to A&E, and the same with Vinnie because there’s a consult system and those systems, like, literally, because it says if you've got a headache with a chest pain, you've got to go to the... you've got to go to the doc- the hospital.
Well, I... like, you know, we constantly live with Long Covid, with chest pains or headaches, or you know, and... yeah. All of our symptoms are such that we’d end up in A&E every five minutes. But yeah, it... it took a lot of those kind of emails I think initially to build that relationship and that grounding and understanding, and I think I just was very forceful of the fact that you can’t dismiss me and you can’t dismiss this with something else, because anytime that... like, every time we went to the doctor’s, we dealt... for Vinnie, we dealt with a different doctor who kept saying things like, “you don’t know it was Covid, you don’t know, you don’t know”, and I would just standby it and say, “This was down to Covid, this is Long Covid,” and... and it... but it has taken a lot longer for Vinnie because even up till my last thoracic clinic appointment when I said, “And my son’s still got... my son’s got Long Covid, he’s four,” he went, “Children don’t get it,” and I went, “How can you even believe that?” and that was like a... a thoracic... a Long Covid thoracic clinic consultant.
And I had to say to him, “I can’t believe you think that,” I said, “you need to really have a better understanding because children do get Long Covid.”
Louise had to provide information to the doctor so they would know where her 13-year-old daughter Eleanor needed to be referred.
Louise had to provide information to the doctor so they would know where her 13-year-old daughter Eleanor needed to be referred.
So they didn't really know what they were doing anyway with referring a teenager, they didn't know if they could, they didn't know what the...I had to send them all of the links to show where we needed to be referred, and it’s kind of gone beyond the stage now where that would be really useful, we needed in December or January, we don't really need it now, but that’s only because we've been lucky to see this Covid specialist doctor who suggested all of these things.
Emma A and her 10-year-old daughter had been seen in a Long Covid clinic but had heard nothing about when the next appointment would be. She said, “I should have pushed but I’m tired of being characterised as this pushy parent, you know, but equally it’s been eleven weeks now and she hasn’t walked and we’re really trying to live in the moment, because it’s really difficult to think that my daughter hasn’t walked for eleven weeks, and I’ve got no idea when she’ll walk again.”
Some people had simply decided not to request or go forward with a referral. Claire said she had heard that their local Long Covid clinic focused on respiratory symptoms, like breathlessness, which her 12-year-old daughter had not experienced. Francesca decided that the referral wasn’t necessary anymore as her daughter’s symptoms had improved.
Several people we talked to were unaware that Long Covid clinics existed, such as parent Sonal, who said, “Is there a Long Covid clinic? I’m not aware of that…I think all they’re doing is focusing on my diabetes. Their attention is just there, I think.”
Experiences of the Long Covid clinic
Once they were able to get an appointment with a Long Covid clinic, some people were disappointed by the lack of help available. When we were talking to people in 2021-22 there was very little available in the way of treatment for Long Covid, and the condition was sometimes not well-understood by clinicians (see ‘Talking to others about Long Covid’). While people appreciated having someone listen to them, the focus was on managing symptoms, which was demoralising for some families who were expecting testing, investigations, and treatment.
While Catherine felt relieved that the team at the Long Covid clinic spent time listening to her 17-year-old son’s story, she was disappointed at the lack of treatment available.
While Catherine felt relieved that the team at the Long Covid clinic spent time listening to her 17-year-old son’s story, she was disappointed at the lack of treatment available.
So many things like that, and being kind of mislabelled though eventually he was seen in the Long Covid clinic which was quite helpful because they listened to the whole story and not just one half of it and spent you know, a good hour with us and that was really, really good that felt much better for us to be heard and also not to be dismissed and for them to understand that actually this is Long Covid and it’s a multi system disease which you know we can’t understand and that they’d do what they could to help. So, that felt better. But there’s still really no treatment available.
While some families had been offered follow-up support with an occupational therapist or physiotherapist, not everyone had been offered these therapies.
Sasha’s daughter was not offered any follow up support after the Long Covid clinic appointment.
Sasha’s daughter was not offered any follow up support after the Long Covid clinic appointment.
Yes, yeah we did, it wasn’t overly useful, I think because she’d turned a corner it’s very much they wanted just to watch and wait rather than intervene with things that may do more damage than not. So, it they didn’t really offer up any follow-up support in terms of physio or occupational therapy, the cardiologist wasn’t at the meeting, the Long Covid hub meeting which they were meant to be, so we still haven’t really had an input on that. So, they said they’d get back to us, but they haven’t. So, we did see [name], our local MP, my husband had a meeting with him to discuss the lack of paediatric Long Covid pathways and the funding. And we did get a letter back from the [county] NHS Commissioning Authority saying that they haven’t got things right with [my daughter] and they were going to talk with NHS England on refining the pathways.
Other families felt that there was too much focus on psychological causes of Long Covid. Like Emma A, Emma B believed that the clinicians thought Freya’s symptoms were ‘in her head.’
Emma B was expecting more help from the clinicians, who questioned whether Freya’s physical symptoms were ‘learned behaviours.’
Emma B was expecting more help from the clinicians, who questioned whether Freya’s physical symptoms were ‘learned behaviours.’
So the Long Covid clinic we visited after me chasing it up and up and up lots of times and there was a psychologist, a consultant, and an occupational health physiotherapist, I felt the emphasis was very much on mental health and basically they said that we’re an assessment centre and you’ve already got a diagnosis so there’s nothing they can do, just we got some basic help and support on pacing and things and the physio, you know. There was nice people and everything but there was just no, I expected a bit of a miracle that they’d help and do some more tests or do some, you know, just help a bit more. And there was just, there was just nothing. We, I mean me and Freya was separated in a room and we had to answer questionnaires about like, ‘Do you steal, do you…’ It was very psychological based, ‘Do you hit other children, do you have anxiety…’ and I just think there was very much going down a lot of the anxiety route. They asked if everyone in the family was well and I just said yeah everybody’s fine, but my husband has a spinal fusion but this was like, he’s had a bad back for nine years and they sort of like questioned whether it could be because Freya’s bad back is like learnt behaviour from seeing her dad but I explained that she’s never complained of a back pain since, until she was, you know, 11 years old and pre-Covid she wouldn’t want to be like this, pre-Covid Freya was the fittest, healthiest active child I know. She’s, you know, a distinction grade dancer, she was in theatre productions, captain at her football team, you know, there’s no way she’d want to not be able to do the things she’s passionate about and loves. So, I just felt like, you know, it was a bit of a kick in the teeth really because I was really looking forward to getting some help and answers.
However, families also had positive experiences with Long Covid clinics. Some appreciated being seen face-to-face at their Long Covid clinic and liked that clinic staff checked up on them between the scheduled appointments.
Abigail (13 years old) recalled how her doctor spoke to her kindly and respectfully, like an adult.
Abigail (13 years old) recalled how her doctor spoke to her kindly and respectfully, like an adult.
Yeah, that the...Long— the doctors I work with, they're all very lovely to me and they all like they're all very good at like helping me with like everything that’s going on and stuff, like if I'm like...they'll always ask me like, ‘Are you comfortable with this, are you okay answering this?’ They're very good at like respecting like my boundaries and stuff and it’s very good.
Samir felt that the doctors at the Long Covid clinic were most helpful because they were ‘specialised.’
Samir felt that the doctors at the Long Covid clinic were most helpful because they were ‘specialised.’
I've only had two doctors, I think. One is [doctor] from the hospital closest, and there’s also a small team at Long Covid clinic, which have been helping me. I think the team has been helping more because they're specialised in helping with Long Covid.
And how have they been helping you?
They’ve...some have given me some physiotherapy...they gave me some... was it them who gave me the medicine? Yeah, they gave me some medicine and taught me some physiotherapy to do with my feet, and they've been monitoring me [sighs].
Some families were referred on for further investigations. Jake (16 years old) was referred to some peer support group therapy with other teenagers around his age, where they could talk to each other about their experiences.
They also received advice and assistance on managing their illness at home, including building a daily routine and plans for managing school.
Lucy A (14 years old) has made a plan with her doctor at the Long Covid clinic for managing her symptoms at home.
Lucy A (14 years old) has made a plan with her doctor at the Long Covid clinic for managing her symptoms at home.
Lucy: That’s the Long Covid clinic. He’s had her pull everything back and start a routine, so she gets, she’s supposed to get up every day and not sleep and go to bed at the same time every night.
For the past few days when I’ve been doing science, I’ve broken that and I’ve taken a nap. That’s because I’m doing constant work and I am napping. But after my science tests, I’m going to go back to that completely. I’m not going to nap. I’m going to do the full days.
Mum: You’ve started singing lessons.
Lucy: Oh yeah, I’ve started singing lessons as more of a—
Mum: A fun thing to do.
Lucy: Yeah. Because I was quite…I’ve been quite low because I can’t do any of the stuff that I used to do all the time. I have no hobbies anymore. And with singing, all I needed to do was just sit down and sing. It’s still, it takes up energy, but not as much as other things would.
Interviewer: Do you do that one-to-one or are you singing with other people in a choir?
Lucy: One-to-one. I could not sing in front of other people [laughs]. I can’t. No [laughs]. I can’t. Too stressful.
Overall, families found it most beneficial when clinicians took a holistic approach, were up to date with research, and checked for other health conditions.
A doctor speaks - Helen Salisbury discusses why people might like to attend a Long Covid clinic.
A doctor speaks - Helen Salisbury discusses why people might like to attend a Long Covid clinic.
So not all patients benefit from Long Covid clinics. An awful lot don’t benefit as they never even get there. When patients do go to Long Covid clinics some of them have a really positive experience, and some of them find that they didn’t really gain anything.
But it is very difficult to know in advance who is going to benefit from a Long Covid clinic. There are somethings that are particularly useful, and I would say maybe top of that is respiratory physio. Lots of people with Long Covid find that their breathing just doesn’t come naturally anymore. Sounds a bit strange because we usually don’t think about our breathing at all, but actually after Covid some patients have to learn to breathe, and respiratory physios really help with that. But there are lots of other people lots of other professionals who are attached to Long Covid clinics there are people who will help with voice, there are people who will help with mental health there are people who will help with physical strength and all of these things are really important in recovery.
The other reason why I think its important for patients to press for a referral and for health professionals to offer referrals to these clinics is that we need to learn more about Long Covid. And unless we have a full picture and unless everybody is counted, we won’t have a clear idea of what the symptoms are, and we will have less opportunity to try new treatments. So, a Long Covid clinic is the best place for being offered possible new treatments for Long Covid.
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