Jana

Jana and her husband have two sons and a daughter; their elder son is doing GCSEs and their daughter her AS Levels. All three children caught Covid in September 2021, but her husband did not get sick. After recovery, all three children went back to school, but their youngest son Samir started getting fevers, aches, and really bad nasal congestion which left him struggling to breathe at night. He would go back to school for a week or so and then come down with the same symptoms again. Their son’s condition has worsened since; he no longer attends school, is now using a wheelchair, and is sleeping downstairs. Jana was interviewed in May 2022.

Jana and her husband initially assumed their son was just catching another virus each time he went back to school, but by November, when their son was still suffering extremely high fevers, they asked the GP to do a blood test. Because their son was under 12 at the time, it took around six weeks to get a blood test, and the GP insisted they would not see their son until the blood test had been done.

A blood test was finally done, as well as chest X-Rays, which came back normal. Later on in January when their son was still suffering high fever, a pediatrician from the HOT clinic was consulted, but Jana explains that he only offered them vitamin D and told them that “there is nothing else and he should be fine to go back to school.”

By that time, their son’s attendance at school was low and the school had become worried. Jana says that all she could tell the school prior to this was that her son was suffering “really bad cold symptoms.”

Jana says that they then managed to get their son back in to school for two full days before half term, but a few days afterwards he “completely crashed out” and was so tired “he couldn’t get up at all from bed.” She and her husband then went back to the paediatrician and requested something in writing because, “he can’t be full time at school because this is just not good for him.” The paediatrician gave them a note and also referred their son to the Long Covid clinic. They were informed by the paediatrician that there was no separate Long Covid clinic for children; this was their first case of Long Covid and Jana says she could tell that they had, “no experience with that at all.”

While waiting for the appointment with Long Covid clinic, his condition worsened, leading to him having a reduced timetable at school and needing to be driven to school by car. By early March he developed suspected costochondritis, which was extremely painful, and he “was in bed for five weeks nonstop.” The GP told them that they cannot do home visits. The paediatrician told Jana, “If you are concerned about it, then go to A&E.” Jana says that it “was just hell.”

One day an ambulance had to be called. Jana and her husband also took their son to A&E after his oxygen levels dropped after standing up. They were told that their son’s vitals were fine and that “he needs to run around more and get more strength and energy.” They then took him back to A&E for a second time because he was in so much pain. He was suspected to have costochondritis, and was also prescribed omeprazole for constant burping, which only seemed to make it even worse. They then had a video call with a GP, where their son found it too painful to stand up and was screaming, resulting in the consultant concluding that “there’s nothing wrong physical…it’s all psychological.” Jana says that she felt gaslighted. When—after two weeks of taking the omeprazole—the symptoms did not improve, the GP advised them over the phone just to continue with more omeprazole.

It took two months for their son to be seen by the Long Covid clinic, and by that time his costochondritis symptoms had improved. Jana recalls that the first thing the doctors did there was stop the omeprazole and start him on melatonin for sleep, which helped get their son back to a normal sleep routine. Jana says that he now is taking paracetamol for pain relief, melatonin, antihistamines and vitamin D, and “that’s all is happening.” She feels the doctors are treating the symptoms but “not the root cause.” Contact with medical professionals and the GP has been a real struggle.

At the time of interview, Samir is still using the wheelchair. He cannot walk by himself at all, and his bed has been moved downstairs. He is intolerant to noises as they cause him discomfort. Hygiene is a big problem, says Jana; they tried giving their son a bath, but he found it too painful and was also unable to get up. They are currently waiting for occupational health to come out and assess the situation.

Jana doesn’t feel they have been treated differently “just because we are non-British.” She also feels lucky to be in a supportive Facebook group, Long Covid Kids, and says that now it is “all down to us researching and asking other parents, you know?” Her husband is currently not working because their son needs constant care at home. Neither Jana nor her husband have any other family members living in the UK; they are all back in Slovakia and Algeria, and there is limited contact, so they are very much on their own regarding family support. There is a family wedding in Slovakia this year; the older children are going, but Jana and her husband will stay at home because their youngest son is too ill to travel. Family activities such as swimming and cycling have also stopped, as well as religious celebrations like Eid, because their son is unable to go out or participate in them.

Jana explains that their son has not had a Covid vaccine, because he was too young for one initially, and now they feel uncertain as to whether it would make his condition worse – “We are not vaccinating him until we feel confident…it won’t affect him basically.” She also mentions they are following the current research about micro clots and treatments of Long Covid abroad, saying “you know you would do anything to make things better.”

Jana said she understood why her son’s school needed a written explanation for his absences from a healthcare professional.

Age at interview 50

At that point his attendance was so low that the school was worried, you know, ‘why is he all the time not coming to school?’ and until we really had a letter from a GP that we were able to provide to school you know they needed to know that there is something in writing, not just what I told them because all I could say to them, “Well, he just got really bad cold symptoms,” because that’s what it was at the beginning, but they… you know they… I could understand why they wanted him to be at school, [sighs] it was just like a circle and it was just never ending, and then we managed to… he had to go to school two full days just before half term, and a few days later during half term just completely crashed out, when he was just so tired he couldn't get up at all from bed, and so we went back to paediatrician, you know we do need something in writing and he can’t be full time at school because this is just not good for him.

Yeah, that’s so frustrating.

Yeah, and I know this is the case of all the parents, you know we… luckily, I'm in contact with the Facebook… Facebook group for the Long Covid Kids clinic… charity, and you know parents are asking each other questions, you know what do I… what else do you take? What do we need to do? And they all have the same problem. If the doctor doesn't provide any letters, school needs to be you know they're asking… it’s not that the school doesn't want to support a child, but they need to have some kind of evidence, you know and if the paediatrician doesn't recognise that you know, yes the child has a reason for a… tired for a reason, you might not have you know burping symptom like Samir has, or maybe they are just too tired to attend, or brain fog or something, and they would say, well, I don’t see anything why there are… you know all the blood test results come back fine, there is no other reason, then the school has no backup to say ‘Yes, OK we can authorise this.’

So, it’s just… it just seems to be going down back to GPs and paediatricians to be willing to pick on it and you know provide more support. That’s—

Had the school… they were worried about his attendance?

Yes, of course they were worried you know as you would be; I can’t blame them for that you know that’s normal.

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Jana had to coordinate her 12-year-old son Samir’s appointments and referrals herself, with little progress from the hospitals.

Age at interview 50

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].

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Jana is considering going to Germany with her son for treatment. She doesn’t understand why she can’t get it in the UK and is worried about the logistics of travelling.

Age at interview 50

Maybe, there is one thing that we are looking into…well, all this research about micro clots. You probably have—you must be aware of it, what’s happening [sighs]. That is really something that… I don’t know how to say, you know we are looking into that option of course, you know you would do anything to make things better, I just can’t understand how people have to go to Germany to get something and we can’t get it here, you know not even privately. People are willing to pay, if you are willing to travel, to pay, it’s not just the pay…to pay, it’s the worst is the travelling, and that’s the biggest issue for us, if we ever have to make the decision that we have to go somewhere, the biggest obstacle is the travelling. You know the money, you might find the money somewhere, and you know as one-off thing or whatever, but to do the travelling is the biggest obstacle for us; we can’t get into the garden, how we going to get to Germany or somewhere else?

So, if we could get it done in UK, I just don’t understand how we cannot get it done in the UK. You know there are quite a few different places in Germany of what I hear, I just…you know we just…I just don’t understand. My friends and family are looking for places in Slovakia where there are some other treatments and tests being done, but I'm asking myself, ‘Really, is Slovakia better than here?’ UK should be a lot more developed in terms of healthcare and you know you've got…I just don’t know even if there is somewhere we can you know go privately, would we be able, from the travelling point of view, to get to that place, to go abroad with his noise sensitivity and vibration? Aeroplane would be out of question. But the journey by car is, you know…so I don’t know what is your opinion, why it’s not happening that much in the UK, what is stopping it getting to that point in UK?

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Jana didn’t want to take one of her children out for Eid celebrations when Samir couldn’t attend.

Age at interview 50

Well, we can’t go to the park. We… we stopped swimming. You know we used to do… we used to regular swimmings, but just the general kind of where… to go out: bike rides, take dog for a walk, just go to the park, he just couldn't do it. And it was… children and my husband are all Muslim, there was Eid celebration, we would often go out somewhere, we can’t go out, so you are you know you think twice… you know, you don’t really want to take the other two out, my two children, somewhere, because you then feel it’s unfair, it’s like you know the summer coming up: going to be here. You know but… I don’t know, it’s still two month, I’m hoping you know his chest pains will get better if he would be then able to be outside, at least go to the park, we could go somewhere, you know we used to go UK places for a day, seaside or somewhere: you can’t do that.

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Jana’s husband lost his catering job during the pandemic. He needed to stay at home caring for their son who had Long Covid and Jana needed to work. Being migrants to the UK, they had no support from extended family.

Age at interview 50

You said that your husband has is not working anymore—

Yeah.

Can you tell me a little bit about that and the caring?

He lost… he… he was in the catering industry, so he lost his job during pandemic in a way, so when it was… well, he was kind of you know start looking going back to work, finding something, but then we had Covid in September and then start Samir started getting unwell, so we always needed… he always needed someone to be around him because I am working full time already, it… we kind of always… OK, he’s unwell now, let’s wait, let’s wait, but then he needed even to drive me to school—because it’s an hour drive, we… we couldn't send him by bus at that point, so then he was always on standby, take him to school, bring him back, but now he’s at home and you know he then ended up on a wheelchair, which is when you know, whereas when he was upstairs it was worst because we couldn't have the wheelchair upstairs, so he couldn't access the toilet, so now we have you know bathroom downstairs so he can access the toilet by himself basically and he’s more independent downstairs.

But it… you know he can’t go back to work as it is now, he needs to be… even if I do work from home sometimes, you know I don’t work every day in the office, because you're still working, you still have to be working, you know the work is great, I can… if I need to take a break, I can take a break, helping with whatever, or if I have any appointment online then you know I work from home, we can do it so I don’t need to take the day off or anything, but that someone always needs to be around him 24 hours a day.

You know I have a… I have a good job in a way that is enough to cover our needs, so that’s why I continue working and we see for how… how long we go. We are OK, I can’t complain too much particularly because there is nothing else we can do.

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Jana recognised her son’s symptoms after reading about it on a Long Covid Facebook group.

Age at interview 50

I thought either he’s… you know his immune system was low and he’s just picking up on things, but then in January I find this group charity on Facebook—and I start reading the stories there, and it just hit me that’s exactly what we're going through, you know all those symptoms actually, what they were mentioning, I realised that’s what it is, so that’s when I then demanding to see paediatrician, because then he had the high fevers, and again migraine, and body ache, and I knew that… I could see the pattern there— that it was repeating then.

You know always… it was always in the back of your mind, ‘what is this… this is what it is,’ but by then when I read all the stories on Facebook of other parents, I knew, I just knew that that’s what it was, their children were going through similar journeys, you know slightly different symptoms at some point of course, but the majority was the same thing there, and that’s when you realise you know it’s not that he’s just picking up virus, but there might be more to it.

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Jana’s son Samir is using a wheelchair and has moved to sleep in the living room downstairs where he can get to a bathroom on his own. She hopes an occupational therapist might suggest ways of adapting their home.

Age at interview 50

He always needed someone to be around him because I am working full time already, it… we kind of always… OK, he’s unwell now, let’s wait, let’s wait, but then he needed even to drive me to school because it’s an hour drive, we… we couldn't send him by bus at that point, so then he was always on standby, take him to school, bring him back, but now he’s at home and you know he then ended up on a wheelchair, which is when you know, whereas when he was upstairs it was worst because we couldn't have the wheelchair upstairs, so he couldn't access the toilet, so now we have you know bathroom downstairs so he can access the toilet by himself basically and he’s more independent downstairs.

Well, we just need someone’s opinion and advice, we’ve never had to deal with something like this, you know and if they… you know I expect them to have experience with other people, other patients, not the… necessarily Long Covid, but in general, that they can say you know, ‘this might be good for you, you can access this.’ I only got the wheelchair because I saw other parents mentioning, ‘we got a wheelchair for the child,’ and I was like, ‘well, maybe it’s not a bad idea,’ but you would have thought you know the GP, if they're in contact, ask you, you know, ‘how are you… how is he getting on?’ or someone will tell you, you know, ‘well, actually it might be a good idea.’ Because when I told them, “He can’t walk, we can’t get him to the car,” they were like, “Well, you've got to,” and I said, “It’s not a solution, it’s not answer I'm looking for,”.

And then they… you know of course you get to the car park in the hospital and luckily there were wheelchairs so  we managed to grab a wheelchair and help him get in, but it was only when I was really discussing you know… or listen… reading to other parents’ stories and messages that it had kind of you know hit me that maybe we really need to get a wheelchair, but getting a wheelchair is you know you kind of have to mentally admit that you reached a point, you would expect someone else to guide you around it, so we… occupational therapist could come and tell you something, you know or this might be good, there are this can… like one of the mums said to me there are this bath boards, he can sit on it and… and because we don't have a shower, we only have a bath—so we can put a chair in the shower to… for him to shower himself…She said, “This is what I use because my daughter is…” so she uses this for her daughter, but then they said that it might be good for occupational therapist to come and measure because there are different types or something. So, I thought you know when they contacted one that someone will get in con… in touch with us and advise us of the best, or how… how to get it or something; I haven't heard from anybody.

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