KITTY McFARLAND was 14 when she contracted Covid-19, in March 2020 — the same month as the UK went into its first national lockdown.
“We had what was termed a ‘mild infection’, in that we weren’t hospitalised; it actually wasn’t mild,” recalls Sammie McFarland, Kitty’s mother, who contracted the virus at the same time.
Long after the self-isolation period ended, they were still ill. “I spoke to the doctor [after] about four or five weeks, and they said they’d heard of a couple of other people that were taking a bit longer to get over the virus; I needed to try harder, do more exercise, that kind of thing. But I couldn’t even brush my teeth, do my hair, get dressed, cut my own food up, get out of bed — nothing,” Mrs McFarland says.
“Our experiences were minimised by five GPs and by nurses at our GP surgery. And I just didn’t believe what they said: that my daughter was mimicking my symptoms.”
She was sceptical, because they wouldn’t see her daughter because “Covid didn’t affect children”; but her daughter’s symptoms “weren’t the same as mine”.
“We were actually told that if we were breathing, we didn’t need medical attention. There weren’t any guidelines then, of course, because long Covid wasn’t an entity.”
Kitty is now 17. She suffers from chronic fatigue, brain fog, abdominal pain, and extreme dysautonomia. “I have it as well, but mine’s slightly different to hers,” Mrs McFarland says. “She’s freezing cold most of the time. She can be wearing her ski thermals and hats in summer and still feel cold.”
In addition, Kitty and Mrs McFarland have postural tachycardia syndrome (PoTS) — a condition that causes abnormal increases in heart rate after sitting or standing up — and take medication just to be able to stand.
And, because they also have post-exertional symptom exacerbation (PESE), they plan energy expenditure as best they can, to reduce the likelihood of crashing afterwards. “We’ve got better at that; but it’s not exactly a science. You’re hedging your bets, really, to get the most out of the available energy and anything you want to do.”
Neither has returned to her previous life. Kitty was an accomplished ballet dancer; Mrs McFarland was a women’s health and fitness instructor. More importantly, Kitty was not well enough to go back to school.
“She wasn’t able to access education for most of the lockdown period, because she was so severely symptomatic. When other children returned, she couldn’t. Her body wasn’t up to getting to school and to studying. She’s essentially had to give herself an education by getting books online, and trying to do BBC Bitesize. But there are lots of gaps.
“We did manage to convince them to provide an invigilator at home; so exams were taken in PJs: bed, exam, bed. She scraped through the exams, dropping most subjects and focusing on four.”
Kate Davies and Bethan Davies, who lives in Swansea
For Kitty, the social impact has been “just horrific, because when her friends returned to education, to their social norm, that was a really big turning point for her emotionally: she realised then that they were able to move forward, and she was being left behind.
“Even the friends who were more sensitive to her health change — it wasn’t long before they left her behind because she couldn’t keep up with the conversations, either cognitively or because she didn’t have the ability to contribute, because she wasn’t participating in anything.”
Kitty, who wanted to be a vet before contracting Covid, is currently doing an animal-welfare science course three days a week. Mrs McFarland says, however, that “she doesn’t have the cognitive ability she used to have.” Kitty is now thinking that she may run a cattery, or work in animal behaviour or rehab. But, again, Kitty has received “no special advice or support to address the gaps in her education, and limited support for her ongoing symptoms”, Mrs McFarland says.
Neither has there been any meaningful help available through the NHS. “The only real support we’ve had is by going private,” Mrs McFarland says, who pays for medication to treat PoTS. In Kitty’s case, “she’s experienced gaslighting in such a catastrophic way that she actually disengaged with all services. . . Every instance she’s had has been negative, with the exception of a gastroenterologist we saw recently.”
In July 2020, Mrs McFarland founded the charity Long Covid Kids. “There was complete denial that long Covid affected children. I’d like to say that, initially, it was for the greater good. But it was because my daughter was so terribly ill, and I just couldn’t believe that what was happening was right. Then I met lots of other families, and it just became obvious that we were not alone, and that we were going to have to be part of the solution.”
Currently, the charity supports in the region of 12,000 families, with children of all ages affected by long Covid. Some of these families have multiple children with long Covid.
THE latest Office for National Statistics (ONS) figures indicate that 62,000 children are currently living with long Covid, 53,000 of these for at least one year. And a new survey from Long Covid Kids and the University of Derby has found that, “for almost 70 per cent of children, it’s had an impact on their education. It’s catastrophic — really stark,” Mrs McFarland says.
“I think we worked out that something like 20 hours a week of education is being missed, because of long Covid, per individual. Derby University team added up how many hours it is across the year, and, essentially, they’re not even getting a third of their education.
“What I hear is that, in higher education, beyond Year 11, there seems to be a bit more willingness to support students. And I think that’s just how colleges and sixth forms are set up. But, with primary and secondary education, most people report an extremely negative experience, with the emphasis being on attendance and not well-being and recovery.”
Kitty McFarland
Long Covid Kids’ lead representative for Wales is Kate Davies, whose daughter, Bethan, was diagnosed with long Covid in January 2022, at the age of 16, after her initial Covid infection in September 2021. She is currently taking her A levels.
“Bethan suffers from many different symptoms, the most severe of these being the onset of PoTS, severe fatigue, and bad headaches,” Ms Davies says. “She suffers daily from joint pain and has memory issues. Covid has also brought on severe food intolerances: she can no longer eat dairy and red meat, and suffers from problems with gluten.
“Lots of children and adults who have long Covid suffer with PoTS. In Bethan’s case, she can near enough tell when it’s beginning: her heart rate stokes to about 130 to 135 beats a minute. It’s quite scary.”
Bethan, who lives in Swansea, is in post-16 education and has, with adjustments, been able to continue at school, with reduced attendance where necessary, coursework extensions, and special arrangements for her A-level exams.
“We’re fortunate to have such a good school, who have done everything possible to understand a new condition,” Ms Davies says.
But Bethan is still struggling with the many ways in which long Covid affects her daily life, not least the “What now?” after A levels. She has a conditional place at Swansea University in September, to study history and politics, but the decision on deferral looms.
“She isn’t living the life of a normal 18-year-old. A good day is managing a day in school, or managing to go somewhere with a friend. She doesn’t go out drinking or socialising in the evening, because she’s not well enough to do that.”
“Many days at school I’ve had to cut short due to the illness,” Bethan says. “I try to stay positive and manage my symptoms, so that my day-to-day life isn’t affected for long periods of time.”
BEN (not his real name) was in Year 7 when he caught Covid. His mother, Saran, says that they had access to a home tutor, on Zoom, for three hours per week, but that Ben was so ill that he missed most of these lessons.
This academic year (Ben is now in Year 8), the idea has been for him to attend one or two lessons a week. “The best that he’s managed so far is two lessons in one day, and lunch. He’s managing to keep up to date with some lessons which are later on in the day, but those which are in the morning, such as English, he’s not managed to do at all. There’s no provision for any online help, alongside the lessons that he is able to go to. You are either in school or not.”
Sammie McFarland
Saran says that Ben’s school has been supportive and has not put pressure on him to increase his attendance. Her plan now is to take time off to attempt to home- school him, alongside the school attendance that Ben is able to manage.
Another mother, Tiffany, who has a child affected by long Covid, related that it had taken her child’s school more than a year “to implement my child being pushed by a TA in their wheelchair from lesson to lesson; this is on a reduced timetable. They still refuse to send home the work that my child has missed through being unwell.”
As a result, she says, she feels the need to home-educate for the foreseeable future, owing to “the lack of care and consideration shown by the school”.
Alexa Edge was 12 when she contracted Covid, in September 2021. She is now 14. For almost a year, she had no contact with her secondary school in London, after previous efforts to attend a few lessons resulted in her completely crashing afterwards. “They weren’t even following up to see what was going on with her. . . So that was really hard, because, for a long time, we just didn’t have any support,” her mother, Jo Edge, recalls.
“Her head of year was the main point of contact we had; she just didn’t seem to understand at all. They seemed to think it was an anxiety problem rather than a physical condition and illness where her body wasn’t doing what she wanted it to do.”
Since Easter, Alexa has been attending an alternative-provision school, set up by the local authority last October for children struggling with anxiety. Alexa is the only child there with long Covid.
There are currently five pupils learning together, and they receive English, maths, and drama tuition; more subjects are set to follow.
Alexa is in Year 9, and recently chose her options — photography, sociology, geography — on top of English, maths, and science. In six weeks, she has built up to attending three times a week for two hours, or for as long as she can if she feels that she can do more. Mrs Edge does not yet know what the plan will be for GCSEs, and whether the focus will be on a few subjects.
The change in Alexa’s schooling was due to the involvement of an occupational therapist, referred through the long-Covid paediatric clinic. “For a long time, we had asked if she could have some kind of home-learning support . . . but it was only when the occupational therapist got involved. She was really putting on pressure, saying that there has to be something, and I think it was then they started suggesting this other option,” Mrs Edge says.
“The change in Alexa mentally has been amazing in such a short period of time, because she was getting depressed, really down, really anxious, really unhappy.”
Nevertheless, she still faces many challenges. “I always feel like I’m missing out on stuff with friends and school. I had a big group of friends at school, but now I only see three of them. I go round to their houses, but can only ever stay a couple of hours, because I get so tired.
“Sometimes, I do a bit too much. Then, a few weeks later, I’ll start feeling really tired, and I’ll be in bed for days. Before Covid, I did contemporary dance, and I used to go skateboarding. But I can’t manage either any more.
“Since Covid, I also get a lot more anxious. I worry that if I do ever go back to school, how will people react to me, and how far behind I will be?”
In addition to the occupational therapist, Alexa now also regularly sees a physiotherapist and a counsellor; in physio, she has built up to walking 12 minutes a day.
“IT’S really challenging for educators to understand a disease which is episodic,” Mrs McFarland says. “Children might be able to do really well in one class and at normal output, but then that might trigger symptoms which then take two weeks before they get back to that stage again. So, they’re not able to be consistent with their engagement or their attendance.
Alexa, who had Covid at age 12, and Jo Edge
“Schools obviously want — if it’s a reduced timetable that they’ve negotiated — [the student] to be in at fixed times on fixed days, because that helps them monitor where students are, and plan. But that doesn’t work if you’ve got an episodic condition, because you don’t know which day is going to be your good day, or which hours that day. So, quite often, parents are asked to commit to a new agreement that they know that their child won’t be able to achieve. And that puts a lot of pressure on families.”
It also puts pressure children with long Covid, she says. “Children are often people-pleasers: they want to please their adults, but, quite often, that is to the detriment of their health.
“It’s also very hard for children to learn, when they’ve got energy, that they can’t just spend all that energy: they need to try and keep some back to help them get through the rest of the day. The boom-and-bust cycle is really common: the crashes, and then doing well, and then crashing again.
Mrs McFarland says that the answer for education settings is to offer “flexible and hybrid learning options for all children with post-viral illness. But also [teachers] need training.”
Long Covid Kids is creating an education toolkit that, it hopes, will be available in July or September: a series of five eight- to ten-minute videos with input from professionals, which have been peer-reviewed. It is available to schools as a free training resource.
“We’re working, trying to educate the educators, so that they can better support the young people: pace them, get them the diagnosis, at least get them on the right pathways and know how to handle their needs — or, even if they can’t meet them, at least understand them, so that our young people have a better experience, because we see it impacting their mental health.
“It’s hard enough, having a large change in your health, a sudden change. It’s even harder if everyone you speak to doesn’t believe you, and thinks you should be trying harder, and thinks that you’re pulling a fast one. We just need to wake people up to the reality of hidden illness.”
The wider effects on families with children suffering from long Covid are significant, she says. “You can’t send children with long Covid to school, and they can’t go to childcare; so that means parents can’t work. We’ve got families losing their jobs — being given disciplinaries for the amount of time they’ve had off. Lots of families have had to go down to one parent working and the other parent at home.
“And our single-parent families . . . — we’ve got nurses who got ill on the front line, who passed it to their children, and they can’t go back to work, because their child got long Covid, and, even though they’ve recovered, there’s no support for them.
“In addition to that, there are things like domestic abuse: if one partner doesn’t believe that long Covid is real, and thinks that the child should be working harder and doing more, and the other parent is trying to protect the child’s health and give them the time to recover. We get enquiries about how to handle that, which is just heartbreaking.
“And also, like I mentioned about our own situation, people leave you behind. As well as [the] young people, other people in your family stop getting invitations to things, because people don’t think you want to come to anything. They think you’re being difficult. It can be a real divide in family units. We hear it every single day.”
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MRS McFARLAND helped to create the clinical referral pathway for the NHS. But there are still problems, she says. “The pathway is relevant. [But] the first challenge is, you’ve got to get a GP to refer you. So, are you seeing a GP who’s knowledgeable? Are they aware of the referral pathway? That’s your first challenge.
“If you can get past the gatekeeper, and you get referred to the service, your next challenge is the waiting list, because the NHS has put so little money into this that the waiting lists are long. And the criteria can be quite tight. For example, if a child’s school attendance is above 50 per cent, then they might decide not to see them in the clinic.”
In England, there are 15 paediatric hubs offering specialist long-Covid services for children. In Wales, long-Covid clinics exist for adults, but not for children, who are referred, instead, to paediatrics. “Paediatrics don’t know what to do with these children; they are not experts in long Covid,” Long Covid Kids’ lead representative for Wales, Kate Davies, says.
Mrs McFarland says that expectations for families who are referred to the hubs have to be managed. “Really, the current long-Covid hubs for children — it’s a validation service; it’s a signposting management-strategy service. There isn’t a cure, although some symptoms can be treated to improve daily life.”
The charity has found that support received from specialist clinics is not consistent. “However, there are certain clinicians who, if you’re lucky enough to get in front of them, families do report better experiences.”
Long Covid Kids is campaigning for investment in paediatric biomedical research. “There has actually been none in the UK at all,” Mrs McFarland says. “And long Covid has just been deprioritised; so investment in research is now going to be even more scarce.”
The charity also wants “recognition that children with long Covid have a wide range of symptoms, and that some of them can be treated”, she says.
“I’ve asked the NHS if they can start looking a little bit more at PoTS, and how we can better support children with long Covid who have symptoms consistent with PoTS, but who maybe don’t meet the criteria for treatment, because all of the children that get the medication privately benefit . . . and that can really change their quality of life.
“That, in turn, supports their ability to get [back] into education, and that supports mental health. It might not be a cure, but it takes people forward. And that’s really what we need to be doing at the moment.”
Mrs Davies has suggested to the health department of the Welsh Government that it would be good to gather lived experience from families whose children have long Covid, but effective dialogue has yet to be established. This is in sharp contrast to the education department, with which the charity has, she says, established good communications.