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.

By Jessica Rawnsley, the i newspaper, 16 May 2024.

Article extracts:

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 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…

“There is a cultural problem that is ingrained within medicine to not believe patients if we can’t explain their symptoms. 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.”

Dr Binita Kane, a consultant physician who set up a private Long Covid clinic.

“FII is a ghostly presence hovering over all these cases,” says Dr Nigel Speight, a consultant paediatrician. “‘Oh, ‘it’s an eating disorder, it’s psychological, it’s a hysterical mother’.’”

Child protection social workers try to find “a pathology” in the family, Dr Speight says: “If it’s a single parent or if the mother’s got ME or Long Covid as well”.

Dr Speight has been assisting families with ME – and now long Covid – pro bono for three decades. He says he’s seen some 2,000 patients in that time, 200 in “real difficulty” where specialised practitioners have stepped in to stop children being separated from their families.

Dr Kane warns that Long Covid provisions are set to worsen as the existing Government-funded Long Covid clinics are being scaled back and become “optional” for NHS trusts.

“It’s a complete lottery whether anyone will have access to dedicated long Covid services moving forward,” she added.

“We don’t have specialists who have the knowledge or skills to treat patients because there’s no training in it and clinicians don’t have time to keep up with the research.

“If anything, it feels like doors are closing rather than opening for these families and children because the little we had in terms of services are being downscaled. And there is no dedicated research funding. We are wading into this storm blindfolded.”

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