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Girl's Death Prompts Rare Brain Disorder Guidance
20 Feb
Summary
- A 12-year-old girl died from an undiagnosed rare brain disorder.
- National guidance on recognizing autoimmune encephalitis is planned.
- A lumbar puncture failure possibly contributed to her death.
A mother's advocacy has led to planned national clinical guidance for recognizing autoimmune encephalitis, a rare brain disorder.
Mia Lucas, aged 12, died in January 2026 after experiencing acute psychosis due to undiagnosed autoimmune encephalitis. An inquest revealed that the failure to perform a lumbar puncture at Queen's Medical Centre before her transfer may have contributed to her death.
Following the inquest's conclusion, the trust managing Queen's Medical Centre issued an apology. The senior coroner also raised concerns with NHS England regarding the recognition and diagnosis of this condition.
In a letter to the coroner, the Royal College of Psychiatry confirmed it will release new guidance on autoimmune encephalitis and psychosis in the next six months. This aims to reduce diagnostic ambiguity and facilitate earlier treatment to prevent future deaths.
Mia's mother expressed that while she is pleased about the forthcoming guidance, it comes too late for her daughter. She hopes the changes will be implemented by the end of 2026 to spare other families similar suffering. The Department of Health and Social Care has directed the matter to NHS England, which is expected to provide a response in April 2026.
