The ipaper report 16/5/2024, by Jessica Rawnsley
'It's destroyed us': parents of children with long Covid accused of making it up'
Doctors and parents say children are being threatened with being taken into care as medics struggle to diagnose their conditions and families are placed under suspicion
inews.co.uk
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'Parents of children with long Covid claim they have been accused of faking or exaggerating their child’s illness, leading to social services’ involvement and, in some instances, court cases and the threat of the child’s removal from the home.
Doctors struggle to diagnose the condition due to its complex range of symptoms and often treat it as a psychological rather than physical disease, with parents telling
i they have been accused of child abuse and of fabricating the illness as a result.
Experts have compared the situation to the way professionals have previously dismissed ME (myalgic encephalomyelitis), an almost identical disease in terms of the variety of debilitating symptoms and lack of universal diagnosis or treatment. ME is a complex neurological disorder that causes symptoms such as chronic pain and exhaustion and, in very severe cases, can be fatal.
One in five parents of children with ME are referred to social services, according to Tymes Trust, an ME charity. Families and doctors warn this is now increasingly occurring with long Covid.
Figures from the Office for National Statistics show an estimated 62,000 children aged two to 16 years have reported suffering from long Covid.'
'But parents have told
i that when they have sought a diagnosis from their GP, or cited it as a reason for their children missing school, they have been accused of FII (fabricated or induced illness) – a form of child abuse in which a parent exaggerates or causes their child’s illness.
One mother, Lorraine Rowley, who has cerebral palsy, said she was referred to social services after her daughter, Ruby, then aged 12, contracted Covid in March 2020.'
'“The consultant started saying that because I’m already in a wheelchair ‘maybe [she] wants to be disabled like her mum.’”
'Ruby was diagnosed with functional neurological disorder (FND), previously known as hysteria, and her family was reported to social services under suspicion of FII.
“[The local consultant] said: ‘This child is in danger, we need to get her out of the home,’ and that we were harming our Ruby and wanted her to be disabled,” says Ms Rowley, 46. “When she kept saying she was in pain, they said, ‘You’re not in pain, you don’t need pain relief.'”
.... 'Part of the reason families become ensnared in the FII net is that the definition was expanded in 2017 to include ‘medically unexplained symptoms’ and ‘perplexing presentations’ – which can be common in long Covid cases. Children’s charity Cerebra
found FII safeguarding referrals were increasing, with 75 per cent of councils having investigated a case in the past three years.
“There is a cultural problem that is ingrained within medicine to not believe patients if we can’t explain their symptoms,” says Dr Binita Kane, a consultant physician who set up a private long Covid clinic.
“You’re almost programmed to think that if you can’t explain it, it must be psychological. The patient must be making it up or mum’s somehow invested in this child being ill. It’s pretty appalling.”
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