Prevention of Future Deaths reports · 2023
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 report | 28 Mar 2023 |
|---|---|
| Reference | 2023-0108 |
| Deceased | Louis Rogers |
| Coroner | Karen Henderson |
| Coroner area | Surrey |
| Category | Child Death (from 2015) |
| Source | judiciary.uk record · original PDF |
| Responses published | 4 |
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
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.
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
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
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
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
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