Mia Lucas

HM Senior Coroner 
Tanyka Rawden 
Office of H.M Coroner 
Watery Street 
Sheffield 
S3 7ES 

17 March 2026 

 – RE: Death of Mia Maisie Lucas 

FAO: HMSC Tanyka Rawden 

Many thanks for contacting me regarding the tragic death of Mia Maisie Lucas and enclosing 
your Report to Prevent Future Deaths. 

In the Matters of Concern you state: 

‘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.’ 

I  can  confirm  that  there  are  no  specific  current  guidelines  on  Autoimmune  encephalitis  in 
Children and Young People in the UK. In 2012 a guideline – ‘Management of suspected viral 
encephalitis  in  children  -  Association  of  British  Neurologists  and  British  Paediatric  Allergy 
Immunology and Infection Group National Guidelines’ was published in Journal of Infection, 
and  whilst  this  guideline  does  reference  Autoimmune  Encephalitis  it  is  mainly  focussed 
around  infective  encephalitis  with  more  limited  information  on  Autoimmune  Encephalitis. 
There  is  a  greater  understanding  since  then  of  the  range  of  presentations,  including  with 
psychiatric symptoms. I understand that this guideline is currently being updated – but has 
not been published yet. 

There  are  many  publications  in  the  medical  literature  describing  the  wide  range  of 
presentations and treatments of Autoimmune Encephalitis. 

However, it would be very valuable to have a NICE (National Institute for Health and Care 
Excellence)  Guideline  on  Autoimmune  Encephalitis  to  provide  best-practice  advice  in 
diagnosing and managing Auto-immune encephalitis in the UK and standardising care across 
the UK for children and young people presenting with Autoimmune Encephalitis. I note that 
you copied your report to Wes Streeting (as I have in my reply) who would be in a position to 

British Paediatric Neurology Association 
Suite M2, Atria Spa Road, Bolton, BL1 4AG  
Telephone: +44 (0)1204 526 002 Email: info@bpna.org.uk 
Charity registered in England and Wales (number: 1159115) 

www.bpna.org.uk 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 support  the  commissioning  of  a  NICE  Guideline  and  the  British  Paediatric  Neurology 
Association would be keen to involved in this. 

One other issue that is worth commenting on is that there is inequality across the UK in testing 
for NMDA receptor antibodies. We asked Paediatric Neurology centres in the UK how long 
they were waiting for their antibody results and more than half of centres are waiting for 
more than 3 weeks with over a third waiting for at least 6 weeks. This delay in diagnosis means 
delayed  treatment  which  is  associated  with  significantly  poorer  outcomes.  It  would  be 
important to work to a more rapid turnaround of NMDA receptor antibody tests across the 
UK in order to improve outcomes from this condition which would mean utilising laboratories 
who can provide results in less than one week. There are a number of bureaucratic hurdles 
to cross to facilitate this – again something that could be supported through Department of 
Health. 

Please let me know if the British Paediatric Neurology Association can be of further help in 
learning from Mia’s death. 

Yours sincerely, 

President 
British Paediatric Neurology Association 

Secretary of State for Health and Social Care 
House of Commons 
London 
SW1A 0AA 

The Royal College of Psychiatrists 
21 Prescot Street 
London  
E1 8BB 

British Paediatric Neurology Association 
Suite M2, Atria Spa Road, Bolton, BL1 4AG  
Telephone: +44 (0)1204 526 002 Email: info@bpna.org.uk 
Charity registered in England and Wales (number: 1159115) 

www.bpna.org.uk

Parliamentary Under-Secretary of State for   
Women’s Health and Mental Health 

39 Victoria Street  
London  
SW1H 0EU  

HM Coroner Tanyka Rawden  
South Yorkshire (West) 
Medico-Legal Centre 
Watery Street 
Sheffield 
S3 7ES 

15 January 2026 

Dear Mrs Rawden, 

Thank you for the Regulation 28 report of 28 November 2025 sent to the Secretary of 
State for Health and Social Care about the death of Mia Maisie Lucas. I am replying as the 
Minister with responsibility for mental health.        

Firstly, I would like to say how saddened I was to read of the circumstances of Miss 
Lucas’s death, and I offer my sincere condolences to her family and loved ones. The 
circumstances your report describes are concerning and I am grateful to you for bringing 
these matters to my attention.  

The report raises concerns about the availability of national guidance on when to consider, 
and how to diagnose autoimmune encephalitis.  

In considering your report, officials within the Department of Health and Social Care have 
made enquiries with NHS England and concluded that these concerns are more 
appropriately addressed by NHS England directly. I am advised that NHS England will 
therefore provide you with a full and comprehensive response on the concerns you have 
raised.  

I hope this response is helpful.   

Yours sincerely  

PARLIAMENTARY UNDER-SECRETARY OF STATE FOR 

WOMEN’S HEALTH AND MENTAL HEALTH

Ms Tanyka Rawden 
Senior Coroner for South Yorkshire (West) 
South Yorkshire (West) Coroner’s Service 
Medico-Legal Centre 
Watery Street 
Sheffield  
S3 7ES 

By Email:

Dear Coroner, 

National Medical Director  
NHS England  
Wellington House 
133-155 Waterloo Road  
London 
SE1 8UG 

27th March 2026  

Re: Regulation 28 Report to Prevent Future Deaths – Mia Maisie Lucas who 
died on 30th January 2024.  

Thank  you  for  your  Report  to  Prevent  Future  Deaths  (hereafter  “Report”)  dated  5th 
February  2026  concerning the  death of  Mia Maisie Lucas  on  30th  January  2024.  In 
advance of responding to the specific concerns raised in your Report, I would like to 
express my deep condolences to Mia’s parents and family. NHS England is keen to 
assure the family and yourself that the concerns raised about Mia’s care have been 
listened to and reflected upon.   

Your Report raised concern that there is no national guidance for clinicians on when 
to consider, and how to diagnose, Autoimmune Encephalitis. 

There  are  National  Guidelines  for  the  management  of  Encephalitis.  They  are  also 
available on the Encephalitis International website to download. Whilst the guidance 
is  not  specifically  for  Autoimmune  Encephalitis  they  include  a  section  on  it.    These 
guidelines are currently being updated and the update has a much larger section on 
the management of Autoimmune Encephalitis. They are in the final draft stage and are 
due to be submitted in April 2026. 

Due to Autoimmune Encephalitis being rare, it likely that there is a lack of awareness 
by  Emergency  Department  staff  and  Children  and  Adult  Mental  Health  Service 
(CAMHS) staff as to when to consider Encephalitis as a diagnosis and when to  consult 
the guidelines.  

Encephalitis International is an international non-profit organisation which does a lot 
of work regarding awareness for medical staff through resources on its website and 
through a conference it runs every year for health care professionals. The website has 
accessible  guidance  which  includes  clear  indications  for  when  clinicians  should 
perform  a lumbar puncture for any child with suspected encephalitis.  

I  would  also  like  to  provide  further  assurances  on  the  national  NHS  England  work 
taking place around the Reports to Prevent Future Deaths. All reports received are 
discussed  by  the  Regulation  28  Working  Group,  comprising  Regional  Medical 
Directors,  and  other  clinical  and  quality  colleagues  from  across  the  regions.  This 
ensures that key learnings and insights around events, such as the sad death of Mia, 

                                                                                                                       
 
 
 
 
 
 
  
 
 
 
 
 
 
 
 are shared across the NHS at both a national and regional level and helps us to pay 
close attention to any emerging trends that may require further review and action.   

Thank you for bringing these important patient safety issues to my attention and please 
do not hesitate to contact me should you need any further information.  

Yours sincerely,  

National Medical Director  
NHS England

Date: 30 January 2026

Dear HM, Senior Coroner Rawdon

Re: Miss Mia Maisie Lucas (Regulation 28: Report to Prevent Future Deaths).

Thank you for sending this Regulation 28 Report to the Royal College of
Psychiatrists regarding the death of Mia Maisie Lucas.

We are grateful for the opportunity to comment upon this report but before
doing that, we would like to extend our deepest sympathies to the family and
loved ones of Mia.

The Royal College of Psychiatrists (RCPsych) is the professional medical body
responsible for supporting psychiatrists. The College sets standards and
promotes excellence in psychiatry; leads, represents and supports psychiatrists;
improves the scientific understanding of mental illness; works with and
advocates for patients, carers and their organisations.  The College does not work
on the care of individuals and are therefore not able to comment on the specific
circumstances surrounding the case of the death of Mia Maisie Lucas.

However, we have considered your findings and have the following comments to
make in relation to the issues that you raise.

In addition, we wanted to highlight actions the College has already undertaken in
this area and what further activity we plan to take to improve practice in the
treatment and care of people with autoimmune encephalitis - particularly at the
psychiatry-neurology interface, including issues that are directly relevant in this
case.

Overarching Comments

This case illustrates several intersecting challenges, in particular the constraints of
current service structures when faced with a rare and complex condition, these
are set out below:.

  Autoimmune encephalitis remains an uncommon diagnosis with an

evolving evidence base, and most clinicians will encounter very few cases
in routine practice.

 Access to and priority of definitive neurological investigations - particularly
lumbar puncture and EEG – can be impacted where there are coexisting
severe symptoms of mental illness that need to be managed urgently.
 Autoimmune encephalitis sits at the interface between neurology and

psychiatry and is typically managed within tertiary neurological services
(with integrated neuropsychiatric expertise). Psychiatric inpatient units are
generally unable to deliver immunotherapies such as high-dose
intravenous corticosteroids, intravenous immunoglobulin, or plasma
exchange, while neurology wards are often less equipped to manage
extreme behavioural disturbance, psychosis, or aggression. It is also well
recognised that patients with autoimmune encephalitis frequently pose
substantial management and safety risks on standard neurology wards
due to severe behavioural disturbance, psychosis, and agitation, such that
neither conventional neurology nor psychiatric inpatient environments
alone are consistently fit for purpose without integrated neuropsychiatric
expertise.

 You highlight, there has been a lack of clear, nationally agreed guidance

specifying when autoimmune encephalitis should be considered, what
minimum investigations should be undertaken in secondary care, and
when escalation to specialist services should occur.

Actions undertaken and planned to address these.

We very much welcome and agree with the concerns that you raise. The absence
of clear, nationally embedded guidance on autoimmune encephalitis -
particularly at the psychiatry-neurology interface - has been recognised as a
significant gap in clinical practice and service provision.

Independent of this particular tragic case, the College has undertaken the
development of national clinical guidance on autoimmune encephalitis and
autoimmune psychosis, it is in the final stages of drafting. This work has been
undertaken as a priority in response to a recognised national need and is directly
relevant to cases such as that of Miss Lucas, in which diagnostic uncertainty and
service interface challenges have been shown to carry significant risk.

The guidance has been developed through a College led cross-faculty and cross-
specialty process, with formal involvement and agreement across relevant
College faculties, including neuropsychiatry, child and adolescent psychiatry,
general adult psychiatry, liaison psychiatry, accident, and emergency medicine.
Development has also involved national experts in neurology and
neuroimmunology, ensuring that recommendations reflect current specialist
practice across disciplines.

 Crucially, this work has been informed by lived-experience contributors, including
individuals affected by autoimmune encephalitis and their families, alongside
third-sector organisations representing and supporting those affected by
autoimmune encephalitis. This will ensure that the guidance is grounded not
only in clinical expertise but also in patient-centred perspectives, particularly
regarding early presentation, service navigation, and the consequences of
delayed diagnosis.

The guidance is underpinned by the best available contemporary evidence base
for this rare condition, including international consensus statements, national
and international guidelines, and recent high-quality empirical studies that
define the neuropsychiatric phenotype, investigation strategies, and treatment
pathways for autoimmune encephalitis and autoimmune psychosis. Where the
evidence base is necessarily limited by rarity, recommendations have been
developed through transparent expert consensus.

The forthcoming guidance is expected to provide:

•

•
•

•

•

Clear clinical red flag features for autoimmune encephalitis in adult and
paediatric mental health settings'
Adult and paediatric mental health settings
Explicit recommendations on minimum investigations expected at
secondary care level, including guidance on lumbar puncture and EEG in
the context of severe behavioural disturbance.
Defined thresholds for early escalation and referral to specialist neurology
and neuroimmunology services, including circumstances in which
treatment should not be delayed pending confirmatory antibody results.
Practical guidance on service interfaces, acknowledging the limitations of
both psychiatric and neurological wards and promoting collaborative care
pathways.

We anticipate that this national guidance will be formally released within the
next six months. Its purpose is to reduce diagnostic ambiguity, support clinicians
working in high-pressure secondary care environments, and - most importantly -
to reduce the risk of future deaths by facilitating earlier recognition and
treatment of autoimmune encephalitis.

In the interim, and consistent with existing national and international guidance,
the College continues to emphasise that autoimmune encephalitis is a highly
treatable condition when identified promptly. Time to immunotherapy remains
the most important predictor of outcome, followed by appropriate
neurorehabilitation in specialist services equipped to manage both neurological
and psychiatric manifestations.

 I do hope that this response is helpful, please come back to us if you would like to
discuss any aspects of it.

Yours sincerely,

Professor 
Registrar
Royal College of Psychiatrists