Louis Rogers

Dear Coroner,

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

20 June 2023

• Immediate hospital assessment by a paediatrician should be arranged: o For a first febrile seizure (or if a child has not been previously assessed by a paediatrician). o 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. o 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.

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.

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

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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, , and interim senior responsible officer for patient safety, , recently met with representatives of NHS England (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.

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.