Before the pandemic, Tilly Orange was just like any other 14-year-old – she loved going to the local trampoline park, went horse riding twice a week and enjoyed bike riding with friends. She was a bright and outgoing pupil and in the top sets for maths and English.
But sadly, since January this year, when she had a positive PCR test for Coronavirus, she’s suffered with long Covid. She rarely gets out of bed and even sitting on the sofa watching TV exhausts her. And, worryingly, she’s missed so much school she’s been told she will move down to the bottom sets.
Speaking just days after Boris Johnson controversially ended the vast majority of lockdown restrictions, despite rising infection numbers and increasing numbers of people being taken to hospital with Covid, Tilly’s mum, Lorraine, 53, a carer who lives in Strood, Kent, says, “She had a few Covid symptoms but nothing too bad. But now she is exhausted, will sleep for up to 20 hours, and there are days when I have to shake her awake. Her room has blackout curtains as her eyes have become very sensitive to light, her hands and fingers swell up and she often feels dizzy. She’s also got no appetite, has lost over a stone in weight and gets rashes all over her body.
“My husband Steven, 51, and children, Maisie, 20, Ellis, 19, Oakley, 15, and Tilly, all caught Covid in January – but it’s Tilly who has really suffered. I caught it first, possibly from when I did the weekly shop.”
The pandemic has caused chaos in schools across the country. Department of Education figures showed that over a million English pupils were out of school on 15 July this year alone, before the school holidays had started – the equivalent of one in seven. School leaders are now questioning PM Boris Johnson’s decision to scrap “bubbles”, and his refusal to offer vaccinations to all students over the age of 12.
And while children across the UK have now broken up for the summer, there are fears that mixing during the holidays could see a further spike in cases, resulting in further disruption to children’s education when they return in the autumn.
Dr Sarah Jarvis, GP and clinical director of patientaccess.com, says, “Figures from the Office for National Statistics show that 13 per cent of five to 11-year- olds still have symptoms after five weeks of a confirmed diagnosis, and 16 per cent of 12-16-year-olds.
“And while there is a very small risk of under-18s dying from Covid – there have been 25 in the whole of the UK since the start of the pandemic – long Covid is clearly a huge problem and young children are definitely at risk. What can happen is that children only appear to have mild symptoms but, six to eight weeks later, they can become severe.
“Sadly, the government has concentrated too much on mortality – death rates – rather than morbidity – the suffering caused by a condition – and we need to look at prevention of it spreading in children. We need to research vaccines further.
“I’ve seen young patients with long Covid, some are so exhausted and weak they’re in wheelchairs. As a parent there’s little you can do other than let them rest and, if it goes on for more than six weeks, then they should see their GP. There’s hope, though – I have seen children badly affected who have recovered.”
It’s the lack of awareness of the condition that led mum Sammie McFarland to set up support group Long Covid Kids, after her daughter, Kitty, 15, suffered for over a year.
She says, “I want other families to know the risks, so we set up the group and there are now over 3,000 children in it.
“We have no idea where we caught it but Kitty and I spent nearly eight months in bed, we were so weak we couldn’t even cut food. We’re getting there, but we were both so fit and healthy before. I am a Pilates and wellbeing coach but had to reduce my hours to five a week as I had no energy and constant brain fog. Kitty would do ballet and ariel trapeze, but now she can’t do a thing.
“Our children aren’t being protected. We desperately need to be spending time and money on increasing robust mitigation measures in school before they return in the autumn term – prevention is the only way to avoid long Covid.”
Eight-year-old Anna Hendy, from Westhill in Aberdeenshire, contracted the virus last April. Since then she has suffered from headaches, muscle aches and nausea as well as extreme tiredness. She has been too unwell for school and has been having to study from home.
Her mum, Helen Goss, says, “Our household caught Covid last year and we all had reasonably mild symptoms. But about three weeks later, Anna had an inflammatory response. It was terrifying. She had a high temperature, stomach pain, headaches and a huge rash all over her arms and legs. She could barely eat and drink, couldn’t walk unaided to the bathroom and had to just stay in her bed in the darkness.”
Anna only received a diagnosis of long Covid two months ago. Helen says, “It has taken a long time, which is why I am calling for dedicated long Covid clinics to open as soon as possible. I think if there are dedicated specialists in one place, then people will get a faster diagnosis and get support much quicker.
“With Anna we are just taking things day by day. The plan is for a very gentle, phased return to school in September, but we have to just take it as it comes.”
Lorraine, 53, desperately hopes that Tilly will be able to go back to school next term, too. She says, “We’ve been to the GP and they’ve done blood tests and we’re waiting for results on tests on her heart. It’s also taking its toll on her mental health. She’s so frightened of getting it again and becoming even more ill that even if she had the energy, she’s not keen to socialise.
“I just have to hope she’ll turn a corner and get better soon.”
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Worried teacher: ‘I’m scared things are about to get worse’
Susan Smith*, 49, teaches maths at a secondary school in Manchester. She says, “At the end of the summer term, I was off work self-isolating after being pinged by the Track and Trace app – and I’d say that over a quarter of my fellow teachers were off too, meaning others had to cover subjects that aren’t their speciality. A third of pupils were also isolating. This is the reality of schools today in Britain – they are barely functioning and if the Government doesn’t get its act together then it will be the same in September.
“I don’t feel safe in my work place. And from September the Government is scrapping bubbles and instead pupils will be contacted by the NHS and asked who they’ve been in close contact with. In a huge school with 1,000 pupils, they won’t know the name of everyone they have passed in the corridor or sat near in the canteen. And try asking a primary school child of five who they had close contact with during the day – it’s a completely flawed idea.
“Schools are a breeding ground for Covid, they have little ventilation and they’re full of teenagers who don’t have a sense of their own safety. Unsurprisingly, they don’t want to social distance or forget to. And I know half of them don’t do the lateral flow tests they’re supposed to.
“I think PCR tests should be done on a weekly basis on pupils and teachers. We need to keep it out of schools so we can get on with teaching. That way, pupils aren’t in danger of long Covid and teachers might feel safe in their work place. I am scared things are about to get worse. Once the new academic year starts in September, there is a complete fear of the unknown - with teachers and pupils not knowing what they might face each day.”
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If you are concerned your child is suffering the effects of long Covid, visit Longcovidkids.