In May 2021, Francesca’s five-year-old daughter had a high temperature and cold symptoms. She tested positive on a lateral flow test for Covid, but the symptoms passed within a few days. Francesca and her husband weren’t infected. Her daughter complained that food tasted unpleasant, and her diet “became really restricted because there were so few things that she could actually tolerate the taste of.” This was complicated by the fact that the family were vegan and “all fruit is off the menu.” Her daughter found salty food like crisps OK but “she doesn't really like chocolate anymore.” The changes to her sense of taste have persisted for nine months although they have started to improve recently. Because of her limited diet, her daughter was found to be deficient in vitamin D and “so we give her the oral spray of that, and a probiotic.” Francesca says, “She’s never verbally expressed sadness really about this change and she’ll just factually say, ‘Oh, my taste buds don’t work properly,’ she’ll just state it as a fact.”
Francesca’s daughter was reinfected with Covid in September 2021, she thinks from school, but again she recovered quickly. The reinfection did not make her taste symptoms worse, but she did develop pain and cold in the hands, feet, and legs particularly at night-time, but these have since improved. A few months after, she also developed an innocent heart murmur, but the health professionals are not concerned about it and think it will heal over time.
A referral to a Long Covid clinic was offered to Francesca’s daughter for her taste symptoms but as these are gradually improving, she does not think it is needed. Francesca is satisfied with the care that they got, “I feel like they had a good attitude to Long Covid, as in they just admitted not much was known about it, but they took the individual symptoms themselves seriously…I didn’t ever feel like we were dismissed, or it wasn’t listened to.”
Francesca was really concerned by the infection rates and lack of prevention measures in schools so kept her daughter off school before and after Christmas holidays 2021 when there was a Covid outbreak in the area. Her daughter caught Covid for the third time three days after returning to school at the end of January 2022. Francesca and her husband both caught Covid this time. Francesca’s husband recovered well, but she still has symptoms seven weeks on.
During the pandemic, Francesca changed jobs so she could work more flexibly and be home based. She is currently working totally from home while she recovers from her Covid symptoms.
Francesca talks about her view of Long Covid: “I think I understood quite early on that it can affect anyone, healthy children can...you know, I was, sort of, quite plugged into those conversations on social media” and had already joined Long Covid Kids before her daughter had Long Covid “because it was just something I was concerned about and I was interested in as a parent, as a teacher, as a health and safety rep, as an anxious person.”
Francesca feels the communication and messaging from schools has always been, “Covid is a mild illness.” She feels her concerns have been dismissed by her daughter’s school and headteacher saying, “‘I’ve answered your questions, I’m following government guidance,’ so she completely closed down the conversation around health and safety…she hasn’t replied to any communications from me since the beginning of February.” She feels the focus in schools and government is too much on attendance and attendance data and that “there was this huge rush to get everybody back into schools together into buildings that are unsuitable, overcrowded, poorly ventilated” with a lack of education around transmission and awareness of Long Covid in children. She says, “Part of me really, really wants to keep reminding people that this thing exists, when it’s very convenient to pretend it doesn't, or to not think about it because it’s depressing and inconvenient. So yeah, sometimes I’ll just...I’ll put it out there because I think someone needs to know [laughs].”
Francesca feels lucky that even though she has had serious fatigue herself, her daughter Sierra was still able to manage activities, including her dance class.
Francesca feels lucky that even though she has had serious fatigue herself, her daughter Sierra was still able to manage activities, including her dance class.
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So she would complain of it in bed at night but it would never be, ‘I don’t want to run around,’ or, ‘I don’t want to do my dance class,’ or it… it would just be that she would feel the pain particularly at night times. But luckily it never reached an intensity that... that prevented her being active and she never had what I am dealing with at the moment: the fatigue, and the oh my God, I can’t catch my breath from just a little short walk, she’s never experienced that. Her activity levels and her ability to take part in physical activity, haven't been impacted, which I know a lot of children, it’s been disabling and completely debilitating and their whole lives have had to... to be rearranged around their illness, it...she hasn’t had that experience, thankfully.
Francesca says the whole experience with her daughter’s Long Covid has taken a huge toll on her mental health. She’s frustrated that Long Covid in children is not taken more seriously.
Francesca says the whole experience with her daughter’s Long Covid has taken a huge toll on her mental health. She’s frustrated that Long Covid in children is not taken more seriously.
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Anyway, the whole experience for me has taken a huge toll on my mental health and has been... I, yeah, I would use the word traumatic, and I don’t use that word lightly because I do have a diagnosis of complex post-traumatic stress disorder which... you know, which the pandemic and fears around, you know, Covid and illness have exacerbated for sure, but I would say, like, the whole experience has been traumatic because of... because of the lack of support, interest, understanding, curiosity, concern with the impacts on long-term health for any age group, but particularly, particularly in this country with children the government’s attitude to me has been so disturbing: this continual narrative of schools are safe, Covid is mild, children don’t... at first, if you remember, there was a... a narrative of children don’t spread... because children don’t get Covid, children don’t spread Covid or... or they spread it so much less than adults that we don’t need to worry about mitigations in schools that actually was the narrative, and before schools closed in January2021 for the second time, Boris Johnson saying, “Schools are safe,” you know, that that’s what has been so jarring and so disturbing to me is you have all of these people... what is it now? 117 thousand children according to official statistics, living with Long Covid, you have all these people having these experiences and we’ve got off relatively lightly compared to some, and then this narrative of we don’t need mitigations in schools anymore, we don’t need free testing, we don’t ... we don’t need to concern ourselves with these people because they’re so few or they’re so... I don’t even know if it’s... they’re considered to be too few or the impact on the economy is not great enough for it to be of concern to the Government, I don’t know what it is that prevents this issue being taken seriously and...
Yeah, that’s what I have found really, really disturbing is on top of the distress of the illness and the worry around your child’s health is this con- constant sense that you're going and swimming against the tide, the tide being children are fine, it’s fine for Covid to rip through our schools, it’s not a problem, it’s mild, and it’s... it has caused me so much distress throughout these last two years, and continues to, and particularly now with all the scrapping of free testing and the complete, kind of, lifting of restrictions and the deletion of Covid from you know, media attention, yeah. So yeah, that’s... that’s been one of the worst things about it for me.
Francesca felt that her work colleagues did not want to face the reality of Long Covid in young people.
Francesca felt that her work colleagues did not want to face the reality of Long Covid in young people.
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So I now work in a new job and with new colleagues, and when I say that I’m still suffering with...the effects of Covid seven weeks on, people’s faces kind of are like...they don’t want to hear that Covid affects people in this way, they want to think “It’s just like a cold now, and it’s fine if you catch it, and everyone will be fine,” and when you challenge that and say, “Actually, my daughter’s developed a heart condition and can’t taste her food nine months later,” they’re like, “Ohh…”
It’s very jarring for me going between...you know, for example, an online community like Long Covid Kids where there’s loads of support, loads of understanding, everybody’s trying to help each other and share information and make things better, to the world of my daughter’s school or the world of my new employer where, yeah, there’s not really even a willingness to acknowledge what’s going on. And in fact, there’s an active suppression of information I would say [laughs].
Francesca said that her daughter was referred to a Long Covid clinic, but they had decided that it was no longer needed.
Francesca said that her daughter was referred to a Long Covid clinic, but they had decided that it was no longer needed.
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And we were going to...well, we did have a referral to the Long Covid clinic, but on the 17th of...we agreed that actually, her symptoms aren’t...I don’t feel that she needs that referral anymore, so we decided not to pursue that, and yeah, that’s where we’re at with her health. She’s not complaining of the pain nearly as much now, which is very good. She continues to have this heart murmur, which apparently is not a problem, and her taste seems to be gradually be coming back, so that’s been our experience with her. It was my choice last time we saw the paediatrician to say, “Do you know what, I don’t think we need the Long Covid clinic referral,” based on how she is at the moment, so yeah, I’m fairly satisfied with the care that we got.
Francesca worries that her daughter would be more vulnerable than others if she got reinfected due to her Long Covid. Her daughter has already been infected three times at school.
Francesca worries that her daughter would be more vulnerable than others if she got reinfected due to her Long Covid. Her daughter has already been infected three times at school.
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So she caught it from school in May, she caught it from school in September [2021], and then you’ll remember there was the big Omicron emergency, as this government deemed it, around Christmas, and so either side of the Christmas holiday I kept her out of school, not because her symptoms were so bad, although we were concerned about the pain she was having and...anyway, you know it...I wouldn't have kept her out of school had there not been a huge outbreak around that time, so I kept her out of school because a question I had for the doctors, that they couldn't answer, was, “She’s had it twice, she’s got ongoing symptoms, what are the risks of a third infection? Are they the same as they would be for any healthy, you know, previously healthy child, or is she now in a certain respect, vulnerable because you've told me she has a heart mur—like, does that now make her vulnerable if she was to catch it a third time?” And they couldn't tell me because it’s not really known, and so I took the decision, because circumstances allowed, to keep her out of school. I don’t know if this is relevant then to your question because it wasn’t...she wasn’t out because of her health per se?
I thought it was, but sort of wasn’t. And she was out for a total of—including the holiday—she was away from school for a total of about five or six weeks. And by the end of that period it has...it started to take a toll on her mental wellbeing, she was getting very bored and lonely basically and missing her friends and missing the social aspects of being physically in school, and I sent her back in January, the 31st of January, and she tested positive three days later because there was a huge outbreak at her school and they had no protections for the children, or the staff, so that was quite upsetting. So that’s how it’s sort of impacted her schooling.
It’s been upsetting because of the level of exposure and risk in her school and feeling that we want her to be in school and we want her be safe in school, but schools for whatever reasons, haven't been made safe and that’s caused a lot of anxiety and upset for me, particularly.
Francesca described ambivalences and tensions over her daughter’s Long Covid diagnosis.
Francesca described ambivalences and tensions over her daughter’s Long Covid diagnosis.
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Do you feel like you have a claim to the term ‘Long Covid’?
For my daughter?
Yeah.
Yeah, I mean... yeah, it’s just that thing of... of being so aware of how badly other children have been affected and thinking, ‘well, you know, she’s not that bad,’ so... so do... do... do I have a claim to... to using that term. But... and maybe part of that is that I don’t... like part of me wants... really wants to recognise that yes, she’s had this illness and she’s had this experience as a consequence, and part of me, like, just wants to think that she’s fine and, like, not call it Long Covid because I don’t want to think of my daughter as, like, and I’ve always tried not to give her a sense of herself as like, ‘I am a sick child,’ or ‘I have an illness,’ or ‘I have a condition,’ like, I don’t think... I think she thinks of herself as healthy, do you know what I mean?
So, like... and we’re lucky that she’s not so badly affected that she damn well knows she’s sick, like she... you know she... she thinks of herself as a healthy child at the moment. Yeah, she can’t taste certain things properly and the doctor listened to her heart and said this thing about there... but she doesn't know what a heart murmur is and we don’t tell her, ‘huh, you've got a heart condition.’ Like, she thinks of herself as a healthy six-year-old child, so yeah, part of me is resistant to the... to calling it Long Covid because I want to have a healthy child, and she believes she’s a healthy child, so there’s a bit of tension around the... the name for me, yeah.
