A nine-year-old girl has pleaded directly with Boris Johnson, urging him to help children like her whose lives have been “destroyed” by long Covid.
Anna Hendy, of Westhill, Aberdeenshire, has been battling a raft of health problems since her family fell ill with the virus in March 2020.
Four weeks after first developing symptoms, Anna became very ill with a high temperature and a spotty rash on her arms and legs.
Mum Helen Goss spent the next eight “terrifying” nights by her daughter’s bedside worried about Anna who was limp and struggled to eat or drink.
At times she was unresponsive, and Helen made several calls to the NHS 111 service for advice.
I wish I could magic it all away because looking into the future is really quite difficult.”
Her daughter initially appeared to recover from the illness but emerged as a different young girl, suffering from insomnia and aggressive behaviour.
For two years she’s been struggling with daily headaches, extreme fatigue, insomnia and poor concentration.
It’s taken almost as long for doctors to diagnose the child with long Covid, having carried out numerous hospital tests to eliminate various other conditions.
‘We need help’
Anna has now travelled to London with her mum, and other representatives of the Long Covid Kids charity, to hand over a new support guide to the government.
And she delivered a personal letter at the door of 10 Downing Street, writing to Boris Johnson to let him know she has felt “absolutely horrible” over the past two years and is unable to go to school because she can’t think or concentrate on her lessons.
She has pleaded with the prime minister to step in and help all 119,000 children in the UK diagnosed with long Covid so far.
She writes in her letter: “I really need you to make things better. Maybe you could speak to Nicola Sturgeon and come up with a plan to help us? We need help.”
‘I don’t know if she’ll get better’
Helen hopes the government will take action and support children by funding paediatric research and improving health and social care packages for young patients.
She says the virus has “destroyed” her daughter’s life and strongly believes that if Anna had received earlier treatment, with antibiotics and anti-inflammatories, the last year could have been very different.
It’s been an exhausting and frustrating journey for Anna and her family who faced a long time to get a diagnosis.
Twelve months after coronavirus hit the family home, Anna was diagnosed with chronic fatigue syndrome and paediatric acute-onset neuropsychiatric syndrome (PANS), conditions believed to have been triggered by the Covid-19 infection.
Doctors have since prescribed several drugs to help her cope with her headaches, dizziness and insomnia, along with other medicines to help regulate her emotions.
But she still has to deal with chronic fatigue and other symptoms every day. She was officially diagnosed with long Covid eight weeks ago.
Because walking for longer than 10 minutes can be difficult, she now uses a wheelchair so she can sit and rest when needed.
“The future is uncertain,” the mum-of-one says. “I don’t know if she’ll get better. I don’t know if she will ever make it back to primary school.
“How long will she need her wheelchair for? I wish I could magic it all away because looking into the future is really quite difficult.
“I don’t know how she’s going to be in the next hour, let alone in the next year.
“And it’s been two years now and I can’t see any improvement.”
It took Anna and her mum a whole week to make the round trip to London because of her condition.
“I’m hoping to do something similar at Holyrood,” Helen says. “But we’re so tired and Anna is going to have to recover from this for a few weeks.”
Anna is often unable to attend medical appointments and her mum is frustrated that they can’t get access to any care at the family home.
“Two years on and it’s disappointing really, her mum says. “She’s been left just sitting on the sofa every day at home, isolated with no help.”
The family now hope that the government will hear their pleas and support children with long Covid, working to improve the health and care services available.
‘It’s painful to think of what lies ahead’
“At the moment we are in the situation where there are families with children who are extremely unwell with varying degrees of disability who are not getting any support – not getting any medical investigations, not getting treatment,” Helen explains.
“There is an urgent issue around training and education about long Covid in children in Scotland because families are going to their GPs who aren’t able to identify it.
“I think a lot of us are waiting for research to catch up with the lived experience.
“The future is so uncertain and painful to think of really.”
A government spokeswoman thanked families for raising awareness and said scientists had been awarded £50m for research to better understand the long-term “debilitating” effects of Covid.
When asked about the family’s concerns about getting access to medical care, a spokesman for NHS Grampian said they were not able to comment on individual cases.
He said: “If those involved wish to contact us directly, to discuss any challenges with treatment and care, we would absolutely be happy to speak with them.”