The early detection of brain inflammation could be life-saving, experts have warned, following the tragic death of a 12-year-old girl who died by suicide while suffering from an undiagnosed form of the condition. Mia Lucas developed severe psychosis and was sectioned, ultimately taking her own life in a specialist psychiatric unit, weeks after the onset of her symptoms.

In the wake of her death, Sheffield coroner Tanyka Rawden has urged for national guidelines to be established for the recognition and diagnosis of autoimmune encephalitis. Campaigners and medical specialists concur, highlighting the urgent need for greater awareness of a condition often missed in various healthcare settings due to its diverse symptoms.

While the coroner’s report was issued earlier this year, some of the world’s foremost experts on encephalitis were already developing crucial national guidelines for doctors. These are anticipated to be published in late 2026.

Last week, Encephalitis International (EI) launched its Flames campaign to raise awareness of encephalitis, which the organisation says is not as rare as many doctors believe.

EI chief executive Ava Easton said the Flames campaign was developed following the success of the Fast acronym in improving public awareness of stroke symptoms.

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

Encephalitis symptoms

According to the NHS

Dr Easton, who is an honorary senior fellow at the University of Liverpool, said these “red flag” symptoms should prompt non-specialist doctors, who may not be used to dealing with encephalitis, to consider the condition.

It is hoped it will also give families a starting point for asking questions of medical staff if they have suspicions.

She 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.

“Or, it might just trigger something in the doctor who will think ‘I wonder if it can be encephalitis’.”

Dr Easton said one of the key “red flags” is a sudden onset of psychosis in a young woman.

She said: “I don’t think that this condition is rare, and the word is banned in our HQ.

“In many countries, it has a higher incidence than motor neurone disease and bacterial meningitis, but they have much bigger clinical and research profiles and get much more investment in them.

“We’re estimating around the world about a million to a million-and-a-half cases every year.”

She said that encephalitis – which is caused either by an infection or, as with Mia, by an autoimmune response – affects three people every minute globally, yet surveys show 77% of people do not know what it is.

David Okai, consultant neuropsychiatrist at London’s Maudsley Hospital, is one of the world-leading encephalitis experts who have been working on the national guidance for the Royal College of Psychiatrists, through its Faculty of Neuropsychiatrists.

Dr Okai explained how the starting point for the working group has been to imagine a non-specialist, resident doctor working in the middle of the night in a district hospital and to then work out how they can be helped to spot key symptoms early, and make the right next choices.

He said: “What would be helpful guidance at three o’clock in the morning to the junior doctor by themselves?

“If you have that as your guiding principle, you can then work backwards from there.

“The documents need to be super-clear. They need to be as helpful as possible.”

Dr Okai said the guidance is nearly complete but has to go through some further steps before it is published by the Royal College before the end of this year.

He said it has been a “fantastic privilege” working with a team to develop the guidance, which has included “bleeding edge” researchers, colleagues in a range of fields likely to be affected, and – “crucially” – patients.

Mia was found unresponsive in her room at the Becton Centre, which is part of Sheffield Children’s Hospital, on January 29 2024 – three weeks after she was transferred from the Queen’s Medical Centre (QMC), in Nottingham.

An inquest jury in November heard how a post-mortem examination found Mia was suffering from undiagnosed autoimmune encephalitis which would have been the cause of the acute psychosis she suddenly began to exhibit at the end of 2023.

The jury found a failure to undertake a lumbar puncture at QMC, as a check for autoimmune encephalitis, “possibly contributed to Mia’s death”.

Mia’s mother, Chloe Hayes, from Nottingham, has welcomed the planned guidelines but said last month: “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.”

NHS England has said it is carefully considering the prevention of future deaths report sent by the Sheffield coroner to “ensure the NHS learns from this case”.

If you are experiencing feelings of distress, or are struggling to cope, you can speak to the Samaritans, in confidence, on 116 123 (UK and ROI), email jo@samaritans.org, or visit the Samaritans website to find details of your nearest branch.