A lack of national guidance about the diagnosis of a rare brain disorder risks further deaths in the future, a coroner has told the NHS after a sectioned 12-year-old girl took her own life.
Mia Lucas was found unresponsive in her room at the Beckton Centre in 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 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.
It was found that a 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 has now written to NHS England outlining her concerns about the recognition and diagnosis of autoimmune encephalitis.
In her Prevention of Future Deaths Report, Mrs Rawden said: '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.'
Following the inquest in November, Mia's mother, Chloe Hayes, from Nottingham, said she will never forgive the doctors who failed to spot the disorder.
Mia Lucas was found unresponsive in her room at the Beckton Centre in Sheffield Children's Hospital on January 29, 2024
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 (Mia pictured with her mother)
QMC apologised to Mrs Hayes and her family, saying they were 'truly sorry' that further tests were not carried out.
The 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 jury also found that there was a failure at the Becton Centre to respond adequately to Mia's risk of self-harm.
In a statement after the inquest, Mrs Hayes said: 'It has been devastating to listen to how, when she needed specialist healthcare, for the first time in her life, she was so badly let down.'
She said: 'My beautiful little girl has lost her life and I will never forgive the Queen's Medical Centre or the Becton Centre for failing her.'
Mrs Hayes said: 'I have never believed for a moment that Mia ever wanted to take her own life. She was always a happy, healthy child and had so much to live for.'
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.
It was found that a failure to undertake a lumbar puncture at QMC before her transfer to the Becton Centre 'possibly contributed to Mia's death'
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.
Mia was transferred to the Becton Centre on January 9.
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.'
Dr Jeff Perring, executive medical director at Sheffield Children's NHS Foundation Trust, said in November: 'We are deeply sorry for Mia's death and recognise the profound impact this has had on those who loved her.'
Dr Perring outlined the changes made at the Becton Centre following a review of Mia's care.