Prevention of Future Deaths reports · 2023

Louis Rogers

Regulation 28 report to prevent future deaths, reference 2023-0108, written 28 Mar 2023. A coroner writes one of these when an inquest reveals a risk that could cause further deaths unless something changes.

Date of report28 Mar 2023
Reference2023-0108
DeceasedLouis Rogers
CoronerKaren Henderson
Coroner areaSurrey
CategoryChild Death (from 2015)
Sourcejudiciary.uk record · original PDF
Responses published4

The report

Text extracted from the PDF text layer. Reproduced verbatim, including the scan's own layout.

IN THE SURREY CORONER’S COURT 
IN THE MATTER OF: 

__________________________________________________________ 

The Inquest Touching the Death of Louis James Rogers 
A Regulation 28 Report – Action to Prevent Future Deaths 
__________________________________________________________ 

THIS REPORT IS BEING SENT TO: 

•  President, Royal College of Paediatricians 
•  JRCALC 
•  N.I.C.E  
•  Royal College of General Practice 
•  Royal College of Emergency Medicine 
•  NHS England 

1  CORONER 

Dr Karen Henderson, HM Assistant Coroner for Surrey 

2  CORONER’S LEGAL POWERS 

I make this report under paragraph 7(1) of Schedule 5 to The Coroners 
and Justice Act 2009. 

3 

INVESTIGATION and INQUEST 

On  8th  February  2022  I  recommenced  an  investigation  into  the  death  of 
Louis James Rogers.  On 2nd February 2023 I concluded the Investigation.  

The medical cause of death given was: 

1a. Cardio-respiratory arrest 

1b. Tonic-clonic seizure 

2. Dravet’s syndrome 

I determined: 

Box 3 & Box 4 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 Louis James Rogers was a fit and well baby who had a self-limiting febrile 

seizure on the 29th September 2020 at 13 months of age. Louis had a further two 
seizures on the 11th February 2021. He was found in his bed at his home address 

on 20.47 hours on the 18th June 2021. There were no signs of life. He was 

transferred to St Peter’s hospital, Chertsey but despite further attempts at 

resuscitation death was certified at 21.53 hours on 18th June 2021 at SPH, 

Chertsey. Genetic analysis after death confirmed Dravet’s syndrome. Louis died 

by way of natural causes.  

1.  CIRCUMSTANCES OF THE DEATH 

1.  Louis was born fit and well on 1st August 2019. On the 20th September 

2020 he had a short self-limiting seizure whilst having a mild cold like 

illness. He was admitted to St Peters Hospital, Chertsey (SPH) for further 

assessment and discharged later that day having fully recovered.  

2.  Louis remained well until the morning of 11th February 2021 when he 

had a second self-limiting seizure. He was again taken to St Peters 

Hospital, Chertsey for observation and discharged later that day after 

being reviewed by a consultant paediatrician.  

3.  However, shortly after discharge, Louis had a further seizure in the early 
evening ~ 17.00 hours of 11th February 2021. The emergency services 

attended and after a period of observation, Louis remained at home.  

4.  On 1st May 2021 Louis attended the Emergency Department at St Peters 

Hospital accompanied by his father over concerns of a 1 day history of 

being lethargic, clingy and wobbly on his feet following a minor head 

injury 5 days prior. Louis was discharged after observations were normal 

and no abnormalities, including neurological deficits, were found.  

  
 
 
 
 
 
 
 5.  On the 13th May 2021, Louis’s parents visited and were reassured by the 

GP following concern over a further seizure whilst Louis was at nursery 

on a background of concerns over Louis’s developmental regression.  

6.  On 18th June 2021 Louis had been clinically unwell and was laid down to 

sleep for the night. Louis was found unresponsive a short time later. 

Emergency services attended and Louis was taken to SPH with ongoing 

resuscitation but to no avail and Louis was recognised to have died at 
21.53 hours on 18th June 2021 at SPH, Chertsey at 22 months of age. 

7.  Autopsy confirmed Louis had a viral infection at the time of his death and 

genetic studies confirmed a diagnosis of Dravet’s Syndrome, a condition 

associated with developmental regression and delay, autism and epilepsy 

which can be triggered by pyrexia and may be resistant to treatment with 

antiepileptic agents.  

CORONER’S CONCERNS 

1.  Management and investigation of Febrile Seizures  

Evidence was heard that a number of children who have ‘febrile’ seizures 

subsequently die from ‘sudden unexpected death in childhood’. Evidence 

was provided that there should be greater emphasis on medical education, 

research and public information for sudden unexpected deaths associated 

with  febrile  seizures.  Further  evidence  was  heard  that  referrals  for 

assessment  and  investigation  of  febrile  seizures  should  be  undertaken 

earlier to exclude a more severe underlying illness. 

2.  Information provided to parents/guardians after their child had a 

Febrile Seizure 

 
 
 
 
 
 
 
 
 Evidence  was  heard  that  the  NHS  website  and  pamphlet  provided  to 

parents/guardians  following  a  child’s  febrile  seizure  is  insufficiently 

informative  to  provide  parents  with  sufficiently  detailed  information  to 

assist them in picking up potential early indicators of a more severe illness 

e.g.  issues  with  gait,  co-ordination,  definition  of  complex  seizures, 

developmental regression etc.  

3.  Improvement  to  and  highlighting  of  the  JRCALC  guidelines  for 

paramedic management of seizures in children 

JRCALC guidelines indicated paramedics should have conveyed Louis to 

hospital  or  contacted  the  GP  and/or  Out  of  Hours  GP  service  following 

Louis’s second seizure on 11th February 2020, as the close proximity of two 

seizures indicated it was a ‘complex febrile seizure’ rather than a febrile 

seizure.  This  led  to  a  lost  opportunity  to  expeditiously  trigger  further 

investigation  and/or  a  referral  to  either  the  ‘first  seizure’  service  or  to  a 

specialist paediatrician for further assessment and management. Evidence 

was  heard  that  improving  and  highlighting  JRCALC  guidelines  with 

additional teaching would prevent this happening again. 

4.  General Practice -  

At his mother’s request after the possibility of a further seizure, Louis was 

reviewed by his general practitioner on the 13th May 2021 following which 

Louis’s  mother  was  reassured  without  a  detailed  history  from  Louis’s 

mother  or  a  full  neurological  examination  and  in  the  absence  of 

 
 
 
 
 
 
 documentation in circumstances  whereby it was acknowledged  there was 

sufficient information at that time to refer Louis to secondary services for 

the  management  of  children  with  febrile  seizures.  It  would  therefore  be 

appropriate to consider providing robust national guidance and education 

to  general  practitioners  to  ensure  appropriate  history,  examination, 

investigation  are  undertaken  to  allow  timely  referrals  to  secondary 

medical services to be undertaken.  

5.  Febrile Seizure Pathway 

Evidence was heard that Louis was seen by a number of clinicians without 

a co-ordinated response to his presentation and that consideration should 

be given for all hospitals emergency departments and GP’s to be provided 

with  a  febrile  seizure  pathway  as  a  checklist  to  ensure  children  are  not 

given a diagnosis of a ‘febrile seizure when this is not supported by their 

presentation  and  for  all  consultations  –  including  GP  appointment  and 

information from the paramedics is available for all clinicians to view to 

provide a holistic picture and to assist further management.   

6  ACTION SHOULD BE TAKEN 

In my opinion action should be taken to prevent future deaths and I 
believe that the people listed in paragraph one have the power to take 
such action.  

7  YOUR RESPONSE 

You are under a duty to respond to this report within 56 days of its date; I 
may extend that period on request. 

Your response must contain details of action taken or proposed to be 
taken, setting out the timetable for such action. Otherwise, you must 
explain why no action is proposed. 

8  COPIES 

 
 
 
 
 
 
 I have sent a copy of this report to the following: 

1.  See names in paragraph 1 above 
2.  Mr and Mrs Rogers 
3.  Chief Executive, St Peters Hospital, Chertsey 
4. 
5. 

In addition to this report, I am under a duty to send the Chief Coroner a 
copy of your response.  

The Chief Coroner may publish either or both in a complete or redacted 
or summary form. He may send a copy of this report to any person who, 
he believes, may find it useful or of interest. You may make 
representations to me at the time of your response, about the release or 
the publication of your response by the Chief Coroner.  

Signed: 

Karen Henderson 

DATED this 28th Day of March 2023

Responses

4 responses published against this report on judiciary.uk. A response is a body's written reply to the coroner's concerns; publication is at the discretion of the Chief Coroner's office, so an absent response does not mean nobody replied.

Response from Association of Ambulance (PDF)
Association of Ambulance Chief Executives 
25 Farringdon Street 
London 
EC4A 4AB 

20 April 2023 

Dr Karen Henderson 
HM Assistant Coroner for Surrey 

Dear Dr Henderson 

LOUIS JAMES ROGERS (DECEASED) 

I am writing in response to the preventing future deaths report we received at the Association of 
Ambulance Chief Executives (AACE) dated 28th March 2023, and I respond as our Managing Director on 
behalf of AACE, Joint Royal Colleges Ambulance Liaison Committee (JRCALC) and our CEO.  

It may be helpful for us to explain that AACE is a private company owned by the English and Welsh 
Ambulance NHS Trusts. It exists to provide ambulance services with a central organisation that supports, 
co-ordinates and implements nationally agreed policy. Our primary focus is the ongoing development of the 
English ambulance services and the improvement of patient care. It is a company owned by NHS 
organisations and possess the intellectual property rights of the Joint Royal Colleges Ambulance Liaison 
Committee UK ambulance service clinical practice guidelines (the “JRCALC guidelines”). AACE is not 
constituted to mandate or instruct ambulance services however it has national influence via the regular 
meetings of ambulance Chief Executives and Trust Chairs along with a network of national specialist sub-
groups.  

With regard to your matter of concern relating to ambulance services: 

Improvement to and highlighting of the JRCALC guidelines for paramedic management of 
seizures in children. 

JRCALC guidelines indicated paramedics should have conveyed Louis to hospital or 
contacted the GP and/or Out of Hours GP service following Louis’s second seizure on 11th 
February 2020, as the close proximity of two seizures indicated it was a ‘complex febrile 
seizure’ rather than a febrile seizure. This led to a lost opportunity to expeditiously trigger 
further investigation and/or a referral to either the ‘first seizure’ service or to a specialist 
paediatrician for further assessment and management. Evidence was heard that improving 
and highlighting JRCALC guidelines with additional teaching would prevent this happening 
again. 

I can confirm that I have liaised with the Chair of the JRCALC committee and that a review of the 
convulsions in children guidance has been undertaken.  The JRCALC guidelines are used regularly by 
ambulance clinicians in everyday practice. Having reviewed our guideline we agree that if our guideline 
had been followed, Louis should have either been conveyed to hospital on 11th February 2021 when he 
had a second seizure that day or he should have been referred to a GP.  

Our guideline for convulsions in children contains a lot of information, detailing points about incidence, 
severity and outcome, assessment and management. The management section includes information on 
how to manage an active seizure using medicines and has a section related to when children should be 
conveyed to hospital. Our guidance is not intended to be a medical textbook and we do not expect 
paramedics to only use our guidance to support clinical decisions.  

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 It is important to note that the education and training of paramedics is not within the remit of AACE or 
JRCALC. Ambulance services have local mechanisms such as seeking senior clinical advice to support 
decision-making and local pathways are established to determine where it is best to convey a patient and 
how to refer a patient to community services such as primary care if not conveying a patient to hospital. 
The guideline has a number of points within it that we wish to highlight: 

•  Always consider (and actively seek) the underlying cause for the convulsion. 
•  When managing a febrile convulsion, it is not sufficient to simply manage the convulsion. It is 
vitally important to seek and identify the underlying infection producing the child’s fever, 
especially if managing in the community (although this should not delay immediate treatment 
priorities or hospital transport). 
It (a seizure) can be related to another underlying condition such as cerebral palsy or a genetic 
disorder. 

• 

•  66% of children only ever have one febrile convulsion; the remainder may have further episodes 

during subsequent infections. 

•  1 in 20 epileptic children have CSE (more common in children with Dravet syndrome and Lennox-

Gastaut syndrome). 

•  Transfer to further care: Any child two years old or less who has had a seizure (even if totally 

recovered). 

The following children may not require transport to hospital: 

Children following a febrile convulsion: 
that is not their first and 

• 
•  who have completely recovered and 
•  where the carer is happy for the child not to be transported may be left at home, providing 

that urgent review by the general practitioner (GP) or out-of-hours (OOH) GP is arranged to 
establish the cause of the fever. If this cannot be arranged by the attending crew, the child 
must be transported to hospital. 

In summary, having reviewed our guidance related to convulsions in children, we do not believe that it 
needs improving at present.  We will review it as part of our ongoing work to ensure that all our clinical 
guidelines are reviewed on a regular basis and kept as up to date as possible with any new clinical 
evidence that we become aware of.  

We have taken an action to make all the medical directors and lead paramedics of UK ambulance services 
aware of the circumstances of Louis’ death and have asked them to review the JRCALC guidance and any 
local pathways or guidance in relation to decisions around conveying children after seizures. We have also 
reminded ambulance trusts of a best practice guidance document that was written, approved and 
disseminated by NASMeD to ambulance trusts in July 2021: “Conveyance of children by operational 
ambulance clinicians in face-to-face settings” (attached). This was developed as a result of a Health 
Services Investigation Branch (HSIB) recommendation issued to us in June 2019 in relation to a case of an 
undetected button and coin cell battery ingestion in a child.  

On behalf of AACE, I would like to extend our sincere condolences to the family of Louis James Rogers. 

I hope this response has adequately addressed the concerns that you have raised. If you have any further 
questions please do not hesitate to get in touch. 

Yours sincerely 

Managing Director
Response from Emergency Care Committee (PDF)
13.04.2023 

Dr Karen Henderson 
HM Assistant Coroner for Surrey 

Re: The Inquest Touching the Death of Louis James Rogers A Regulation 28 Report – Action to Prevent Future 
Deaths 

Dear Dr Henderson, 

Further to your Regulation 28 Report the Royal College of Emergency Medicine (RCEM) were sorry to learn about the 
death of Louis James Rogers and we extend our condolences to his family.   

We understand from your report that Louis had an undiagnosed rare genetic condition Dravet’s syndrome [1] which 
led to a seizure whilst asleep and then unfortunately death (Sudden unexpected death in epilepsy [SUDEP]).  We are 
aware that increased body temperature can be a trigger for seizures in Dravet’s syndrome and that these seizures may 
be of a complex nature (lasting longer than 15 minutes or occurring again within 24hr [2]; last longer than 10 minutes 
or febrile seizures associated with other features, such as weakness, on one side of the body [3]).  Your report suggests 
that there may have been a missed opportunity to recognise a complex febrile seizure on the same day Louis had been 
discharged from hospital (after seeing a paediatrician) following an attendance with a seizure. 

As I am sure you are aware, febrile seizures are common (2-5% of all children) between the ages of 3-5 years [4] and 
this  accounts  for  a  significant  number  of  emergency  department  (ED)  attendances.    The  National  Institute  for 
Healthcare Excellence has issued guidance on the treatment of febrile seizure as well as the indications for referral to 
a paediatrician; which includes the first presentation of a febrile seizure, complex febrile seizure and any child under 
the age of 18 months [5].  The majority of children who have febrile seizures do not require hospital admission or 
multiple investigations.  It is important that children are not unnecessarily admitted to hospital or subjected to invasive 
investigations with low yields but which cause anxiety and/or distress. 

RCEM would be happy to work with NHS England / National Institute for Healthcare Excellence, Royal Colleges and 
other interested parties to help develop further evidence based or consensus guidance in this complex area of clinical 
practice.  We are mindful that this would be a significant undertaking and that it would therefore not be appropriate 
for RCEM to take the lead on such a project. 

Yours, 

Chair of Quality in Emergency Care Committee 

[1] Dravet Syndrome is a rare, life-limiting & devastating genetic neurological condition, occurring in 1/15,000 live 
births in the UK. The condition causes treatment-resistant epilepsy & intellectual disability alongside a spectrum of 
associated conditions including autism, ADHD, challenging behaviour, difficulties with speech, mobility, feeding & 
sleep. https://www.nhs.uk/services/service-directory/dravet-syndrome-uk/N10497324 
[2] Febrile seizures - NHS (www.nhs.uk) 
[3] Epilepsies in children, young people and adults (nice.org.uk) 
[4] Febrile Seizures | Epilepsy Foundation 
[5] Scenario: Management after a febrile seizure | Management | Febrile seizure | CKS | NICE
Response from NHS England (PDF)
Dr Karen Henderson 
HM Coroner's Court  
Station Approach 
Woking 
GU22 7AP 

Dear Coroner, 

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

20 June 2023  

Re: Regulation 28 Report to Prevent Future Deaths – Louis James Rogers who 
died on 18 June 2021 

Thank  you  for  your  Report  to  Prevent  Future  Deaths  (hereafter  “Report”)  dated  28 
March  2023  concerning  the  death  of  Louis  James  Rogers  on  18  June  2021.  In 
advance of responding to the specific concerns raised in your Report, I would like to 
express my deep condolences to Louis’ family and loved ones. NHS England are keen 
to assure the family and the coroner that the concerns raised about Louis’ care have 
been listened to and reflected upon. 

I am grateful for the further time granted to respond to your Report, and I apologise for 
any  anguish  this  delay  may  have  caused  Louis’s  family  or  friends.   I  realise  that 
responses to Coroner Reports can form part of the important process of family and 
friends coming to terms with what has happened to their loved ones and appreciate 
this will have been an incredibly difficult time for them.   

Management of febrile seizures and guidance for clinicians  

In your Report you express concerns for the management and investigation of Febrile 
seizures  and  the  link  to  Sudden  Unexpected  Death  in  Childhood  (SUDC),  febrile 
seizure pathways and national guidance for General Practice. 

The  National  Institute  for  Health  and  Care  Excellence  (NICE)  are  responsible  for 
producing  clinical  guidance  for  health  and  care  practitioners  on  the  issue  of  febrile 
seizures. Their guidance on Epilepsies in children, young people, and adults (NG127) 
covers  the  diagnosis,  treatment  and  management,  referral  recommendations  and 
information and support for the management of epilepsy and seizures in children: 

Regarding General Practice guidance, there is also a Clinical Knowledge Summary 
(CKS)  on  febrile  seizure,  which  provides  best  practice  advice  for  Primary  Care 
practitioners. This includes clear guidance on assessment of a child, following a febrile 
seizure and on where referrals should be made to secondary care and paediatricians. 
This includes the following:  

                                                                                                                       
 
 
 
 
 
 
 
  
 
 
 
 
 
 
 
 
  
 • 

Immediate hospital assessment by a paediatrician should be arranged: 

o  For a first febrile seizure (or if a child has not been previously assessed 

o 

o 

by a paediatrician). 
If the child is less than 18 months of age, there is diagnostic uncertainty 
about the cause of the seizure, or for recurrent complex febrile seizure. 
If there is any focal neurological deficit, recent antibiotic use, or there is 
parental/carer anxiety or difficulty coping. 

•  Urgent hospital assessment should be considered if: 

o  There is unexplained fever and no apparent focus of infection. 

•  Referral to a paediatrician or paediatric neurologist should be arranged if: 

o  The  child  has  neurodevelopmental  delay  and/or signs  of  a 

neurocutaneous syndrome or metabolic disorder. 

NHS England has been sighted on the response to your Report from NICE, who have 
advised that there is sufficient national guidance regarding the management of febrile 
seizures.   

The British Paediatric Neurology Association (BPNA) provides a series of one/two-day 
courses on Paediatric Epilepsy Training, which are recognised as exemplar training 
by the International League Against Epilepsy (ILAE) and are endorsed by numerous 
international colleagues:  

•  PET  1  is  a  1-day  course  for  all  doctors  and  nurses  involved  in  the  care  of 
children with seizures. This is generally for Paediatricians / Paediatric Nurses 
but is also open to GPs. 

•  PET 2 is a 2-day course for paediatricians and nurses in district hospitals with 

an interest in epilepsy focussing on epilepsies in younger children. 

Patterns of presentation, guidance for referral, red flags for further investigation as well 
as Sudden Unexpected Death in Epilepsy (SUDEP) / communication with children and 
families are at the core of this national training programme. National education with 
reference  to  childhood  epilepsy  for  paediatricians  at  a  local  and  regional  level  has 
improved markedly with the roll-out of this programme over the last 18 years.  

The  gene  (SCN1A)  mutations  that  cause  the  majority  of  Dravet  Syndrome  cases 
cause a wide spectrum of seizures and epilepsies, with Dravet Syndrome being at the 
extreme  end,  but  febrile  seizures  on  the  other.  The  possibility  of  Dravet  Syndrome 
would  be  a  concern  in  children  presenting  with  prolonged,  unilateral,  and  frequent 
febrile seizures in the first year of life, which would need to be genetically investigated. 
The ILAE recommends genetic testing in ‘children aged 2-15 months presenting with 
a  recurrent  seizure  of  aetiology  with  recurrent  prolonged  focal  or  generalised 
convulsive  seizures  with  or  without  a  fever’.    We  have  consulted  with  Paediatric 
Neurology specialists who have advised that Dravet Syndrome is being recognised at 
an  increasingly  younger  age  and  knowledge  about  appropriate  management  is 
improving widely. 

Regarding  the  pathway  for  febrile  seizures,  any  assessment  for  a  febrile  seizure 
should  include  an  assessment  of  the  child’s  and  their  family’s  history,  as  the  NICE 
guidance makes clear. We would also recommend that, wherever possible, there is a 
single named paediatrician for any child to ensure continuity of care. The NHS England 

 Shared Care Records programme will also help join up information held on patients 
who have had contacts between different health care providers and services. National 
interoperability  between  all  public  sector  services  is  a  priority  workstream  for  the 
2023/25 programme.  

Information for parents and carers 

You also raised a concern regarding the information provided to parents/carers after 
their  child  has  had  a  febrile  seizure.  The  guidance  referenced  above  outlines  the 
information  and  support  that  should  be  provided  to  parents  and  carers,  following  a 
seizure.  

The Association of Child Death Review Professionals (ACDRP) have also requested 
to update the NHS website page on febrile seizures to include updated information on 
complications of febrile seizures, risks of epilepsy and further guidance on SUDC. This 
is expected to be updated shortly.  

The increased risk of children who have experienced febrile seizures of  developing 
epilepsy, having neurodevelopmental delays, or suffering SUDC is very low. Febrile 
seizures  are  very  common  in  childhood  and  there  is  a  balance  to  be  met  to  avoid 
disproportionately  concerning  parents  and  carers.  We  have  heard  from  Paediatric 
Neurology specialists that the advice within the leaflet on febrile seizures should be 
tailored to safety-netting during seizure, management of infection and who to contact 
if further seizures occur.  

Where there is concern about a child who is suffering from seizures, particularly where 
there may be suspicion of Dravet Syndrome, parents and carers would be expected 
to be counselled on the increased risk of epilepsy related death, forms of monitoring 
and sleep safety. Unfortunately, no monitoring methods or device are 100% effective 
to avoid SUDEP. 

Other actions 

As a result of your Report, we will also be asking colleagues from each of the seven 
NHS regions to share the learnings from this matter and the guidance available with 
their Integrated Care Boards for cascading to relevant healthcare professionals.  

I would also like to highlight the National Child Mortality Database Thematic Report 
(published  December  2022)  which  includes  a  recommendation  for  action  by  the 
Department  of  Health  and  Social  Care  (DHSC),  NHS  England  and  National  Child 
Mortality Database (NCMD) to ‘Ensure there is robust and consistent national training 
available on the child death review statutory process, Sudden Infant Death Syndrome 
(SIDS), Sudden Unexplained Death in Childhood (SUDC) and available resources’. 
Work is underway to review this and other related actions, to include providing high-
quality support for families on these issues as well as to improve the evidence base 
for  research  on  SIDS  and  safer  sleep,  and  on  SUDC  and  association  with  febrile 
seizures. We will also look to engage with the Royal College of Paediatrics and Child 
Health (RCPCH) on this matter.  

Regarding any updates to be made to JRCALC guidelines for paramedic management 
of seizures in children, I have been sighted on the response to your Report from the 

 Association  of  Ambulance  Chief  Executives  (AACE)  who  are  the  appropriate 
organisation to respond to this concern. I note that they have reviewed the JRCALC 
guidelines  related  to  convulsions  and  that  they  are  satisfied  they  provide  the 
appropriate guidance.  

NHS  England  is also sighted  on  Surrey Heartlands Integrated  Care  System’s  Child 
Death  Review  into  the  death  of  Louis  and  will  consider  if  any  further  actions  are 
required to be taken by us, following its completion.   

I would also like to provide further assurances on national NHSE 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 preventable deaths are shared across the NHS at both a national 
and regional level and helps us 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
Response from Nice (PDF)
2nd Floor 
2 Redmond Place 
London 
E20 1JQ 
United Kingdom 

8 June 2023 

Karen Henderson 
HM Coroner’s Court 
Station Approach 
Woking 
Surrey 
GU22 7AP 

Dear Dr Henderson, 

I write in response to your regulation 28 report of 28 March 2023 regarding the very sad 
death of Louis James Rogers. I would like to express my sincerest condolences to his family. 

We have considered the circumstances surrounding Louis’ death and I have addressed 
below the matters of concern on which NICE can comment. 

Earlier assessment and investigation of febrile seizures and national guidance for 
GPs 

In your report you explain that referrals for assessment and investigation of febrile seizures 
should be undertaken earlier to exclude a more severe underlying illness and that national 
guidance should be provided to ensure timely referrals to secondary medical services.  

We believe that our guideline on epilepsies: diagnosis and management [CG137], which was 
in place at the time of Louis’ death, is directly relevant to this case. The guideline covered 
diagnosing, treating and managing epilepsy and seizures in children, young people and 
adults in primary and secondary care and made recommendations on what should happen 
following a first seizure (section 1.4), diagnosis (section 1.5) and investigations (sections 
1.6).   

CG137 has since been replaced by our guideline on epilepsies in children, young people 
and adults [NG217], and includes updated recommendations on referral (see 
recommendation 1.1.1) and information and support after a first seizure (see 
recommendation 1.1.8 and 1.1.9).  

There is also a Clinical Knowledge Summary (CKS) on febrile seizure. While not formal 
NICE guidance, NICE commissions Clarity Informatics to develop CKS and make them 
available as a readily accessible summary of the current evidence base and best practice 
advice for primary care practitioners.  

We therefore believe that there is sufficient national guidance in this area. 

Sudden unexplained death in childhood associated with febrile seizures  

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 You also explain that evidence was heard suggesting that there should be greater emphasis 
on medical education, research and public information for sudden unexpected death in 
childhood (SUDIC) associated with febrile seizures. 

NICE’s chief medical officer, 
officer for patient safety, 
(NHSE) and the Royal College of Paediatrics and Child Health (RCPCH) to discuss this 
matter. We understand colleagues at NHSE have met with the National Child Mortality 
Database team and SUDIC charities and will be supporting a proposal for a round table to 
discuss and kickstart research and other actions in this area. The RCPCH has indicated that 
they are happy to support this approach and NICE would consider any request from NHSE 
to develop guidance in this area in the normal way. 

, recently met with representatives of NHS England 

, and interim senior responsible 

We hope this reassures you that positive steps are being taken at a system level to prompt 
further research and action on SUDIC, and that this response addresses your concerns.  

Yours sincerely, 

Chief executive 

                                                                                                                                 Page | 2

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Track Child Death (from 2015)

See every Prevention of Future Deaths report matching Child Death (from 2015), and how often a new one appears.

What would an alert for this have sent me? Search the full text

Free to try — the preview shows the real matches and how many arrived in the last 12 months. Your first email alert is free.

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