Drive to boost brain inflammation signs awareness

Warning - this story contains discussion of suicide and self-harm.

A charity has called for greater awareness of the signs of brain inflammation, after a 12-year-old girl took her own life while suffering from an undiagnosed condition.

Mia Lucas died at Sheffield Children's Hospital in January 2024, weeks after being sectioned under the Mental Health Act when she suddenly developed severe psychosis.

An inquest into her death last November heard that Mia, from Nottingham, had undiagnosed autoimmune encephalitis, which would have been the cause of the psychosis.

Encephalitis International (EI) said the condition is not as rare as many doctors believe and that a number of "red flag" symptoms could indicate a patient has developed it.

EI has launched a campaign with the acronym FLAMES to help people spot possible early signs of encephalitis, which is caused either by an infection or, as with Mia, by an autoimmune response.

FLAMES stands for - flu-like symptoms, loss of consciousness, acute headache, memory problems, emotional/behavioural changes and seizures.

EI chief executive Ava Easton said: "It's not a clinically-defined diagnostic test, it's about a pragmatic approach to raising awareness in the public and non-specialist health professionals.

"We've been doing this long enough to know that this will save lives. There's no doubt about that.

"It might just mean that that parent, or that caregiver, or that family member is just a little bit more vocal when perhaps they wouldn't have been, because they've seen the campaign."

Easton said encephalitis affects three people every minute globally, but that surveys show 77% of people do not know what it is.

Sheffield's senior coroner, Tanyka Rawden, wrote to NHS England outlining her concerns about the recognition and diagnosis of autoimmune encephalitis at the conclusion of the inquest into Mia's death in November.

According to lawyers for Mia's family, the Royal College Of Psychiatry has confirmed in writing that it will release national clinical guidance on the condition within the next six months.

Speaking last month Mia's mum, Chloe Hayes, welcomed the planned guidelines but said: "Mia should not have had to die for change to happen because, as the Royal College of Psychiatry has said, it is a highly treatable condition when identified promptly."

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