Family of girl from Nottingham with brain disorder who took her own life welcomes guidance plan
Mia Lucas was found unresponsive in her room at the Becton Centre, which is part of Sheffield Children's Hospital, in 2024, three weeks after she was transferred from the Queen's Medical Centre in Nottingham.
The mother of a 12-year-old girl who took her life while suffering from the effects of an undiagnosed rare brain disorder has welcomed plans to issues national guidance about recognising the condition.
Mia Lucas 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 Mia was suffering from undiagnosed autoimmune encephalitis - a swelling of the brain - which would have been the cause of the acute psychosis she was exhibiting.
The jury found that failure to undertake a lumbar puncture at QMC before her transfer to the Becton Centre "possibly contributed to Mia's death".
Sheffield's senior coroner, Tanyka Rawden, wrote to NHS England outlining her concerns about the recognition and diagnosis of autoimmune encephalitis.
On Wednesday, lawyers for Mia's mother, Chloe Hayes, said the Royal College Of Psychiatry has confirmed in a letter to the coroner that it is to release national clinical guidance on autoimmune encephalitis and autoimmune psychosis in the next six months.
According to Hudgell Solicitors, the letter says the new guidance will aim to "reduce diagnostic ambiguity, support clinicians working in high-pressure secondary care environments, and, most importantly, reduce the risk of future deaths by facilitating earlier recognition and treatment".
It says the new guidance will provide "clear clinical red flag features for autoimmune encephalitis in adult and paediatric mental health settings" and provide recommendations on minimum investigations expected at secondary care level.
Mrs Hayes, from Nottingham, said: "While I am pleased to see that new guidance is being developed, this will always be hugely difficult for me as all this comes too late for Mia.
"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."
She said: "No family should have to lose a child to bring about changes in how known conditions are treated, and it breaks my heart that meaningful action is only being taken now, after Mia has died."
And she added: "NHS England cannot delay on this.
"National changes needs to be in place by the end of the year at latest.
"They must learn from what happened to Mia and implement changes so that no other vulnerable child is failed in the way Mia was."
Solicitor Amy Rossall said: "The Royal College of Psychiatry is leading by example in taking positive steps to ensure guidance is being developed to improve the diagnosis of autoimmune encephalitis.
"At government level, the Department for Health and Social Care appears to have now passed this the way of NHS England, and they are due to provide their response in April.
"That must include a clear, comprehensive and detailed plan as to how it is to improve understanding, diagnosis and treatment across NHS settings."
Following the inquest in November, QMC apologised to Mrs Hayes and her family, saying it was "truly sorry" that further tests were not carried out.
This diagnosis of autoimmune encephalitis only emerged part-way through the nine-day long inquest in Sheffield, after a pathologist revealed she had just received new post-mortem examination test results, provoking shock in the courtroom and tears among Mia's relatives gathered in the public gallery.
The inquest heard how Mia began to behave strangely over Christmas 2023 - including hearing voices and attacking her mother - and her family became so concerned she was taken by ambulance to QMC on New Year's Eve.
The jury heard how blood tests and an MRI scan were undertaken at QMC, which were found to be negative and doctors ruled out a physical cause of Mia's psychosis.
But doctors at Nottingham decided not to order further tests on brain wave function and spinal fluid, through a lumbar puncture, which may have revealed the autoimmune encephalitis, which is very rare.
Dr Manjeet Shehmar, medical director at Nottingham University Hospitals NHS Trust (NUH), said in November: "While this is an incredibly rare condition and initial tests were negative, we recognise that further testing may have had an impact on her future, for which we are truly sorry."
Mia's family has flagged World Encephalitis Day on Sunday, which aims to grow international awareness of encephalitis and of the six urgent neurological signs of the condition that the public and medics should be aware of.