Lack of guidance around rare brain disorder risks further deaths, coroner warns

Warning: This story contains references to self-harm and suicide.

A coroner has warned that a lack of national guidance about the diagnosis of a rare brain disorder risks further deaths in the future after a sectioned 12-year-old girl took her own life. Mia Lucas, who died in January 2024, was found unresponsive at an NHS children's psychiatric unit after developing a rare neurological disorder that had been left undiagnosed.

At an inquest in November, a jury heard how Mia was suffering from undiagnosed autoimmune encephalitis - an inflammation of the brain that can cause extreme psychiatric symptoms and is treatable. The jury found that failure to undertake a lumbar puncture at Queen's Medical Centre (QMC) in Nottingham before she was transferred to the Becton Centre, which is part of Sheffield Children's Hospital, "possibly contributed" to her death.

A lumbar puncture involves a needle being inserted into the lower back to find out if symptoms are caused by a brain or spine condition. Mia had been placed at the centre after being sectioned while suffering an "acute psychotic episode" during an assessment at QMC.

Sheffield's senior coroner Tanyka Rawden has now written to NHS England to outline her concerns about the recognition and diagnosis of autoimmune encephalitis. In her prevention of future deaths report, she wrote: "The court heard there is no national guidance for clinicians on when to consider, and how to diagnose, autoimmune encephalitis.

"Without this I am of the view there is a risk the condition will not be identified which gives rise to a risk that deaths will occur in the future." The autoimmune encephalitis diagnosis emerged partway through the nine-day inquest after a pathologist revealed she had received new post-mortem results. The revelation prompted shock in the courtroom and tears from Mia's family members in the public gallery.

The jury also found there was a failure at the Becton Centre to respond adequately to Mia's risk of self-harm. After the inquest, Mia's mother, Chloe Hayes, told Sky News she was unhappy at how the Becton Centre had supervised her daughter.

"All they had to do was watch her. I actually never got told the truth about the attempts that Mia made [to self-harm] until after she died," she said.

"If I'd have known the truth I wouldn't have left Mia there. And I think she had so much to live for.

I don't think she knew what she was doing." QMC apologised in November to Ms Hayes and her family, saying they were "truly sorry" further tests were not carried out. In a statement in November, Dr Jeff Perring, executive medical director at Sheffield Children's NHS Foundation Trust, said "we are deeply sorry for Mia's death" and outlined changes made at the centre following a review of her care.

Anyone feeling emotionally distressed or suicidal can call Samaritans for help on 116 123 or email jo@samaritans.org in the UK. Alternatively, you can call Mind's support line on 0300 102 1234, or NHS on 111..