Select SUDEP or Non-SUDEP to filter concerns and reports. 3 reports could not be assigned and remain in All only. Counts are PFD reports, not deaths.
About this dataset
We searched all 6,433 reports in the published corpus using a fixed text-search method, then assessed 317 candidates against source-based inclusion criteria. Ninety reports were included. Epilepsy had to be materially relevant to the death or a substantive coroner’s concern; incidental mentions were excluded.
Eligibility and SUDEP assignment were assessed with GPT-5.6 Sol and checked for valid source quotations. Assignment uses a balance-of-probabilities threshold: SUDEP or non-SUDEP must be more likely than not on the report’s evidence. The exact term SUDEP need not appear. Genuinely unclear eligible reports remain in All only. These are model-assisted documentary assessments, not independently validated clinical diagnoses.
The search can miss reports with sparse terminology or incomplete source text. This dataset does not represent all epilepsy deaths. Recurring concerns and responses are taken from the existing published evidence. Published corpus snapshot: 7 September 2026. Cohort selection updated 5 November 2026. The title shows the first and last included reports’ publication dates.
Reports over time
Matching reports published each year within the selected date range.
* 2026 is projected from reports observed to 7 Sep 2026.
Most frequent recipients
Matching reports sent to each recipient.
NHS England2
National Institute for Health and Care Excellence2
Only concerns related to the selected recurring concern and their linked actions and positions are shown. Other concerns are counted within each report.
Actions and positions describe what recipients stated in published responses. Select a statement to read its source wording.
East London
Concerns raised3
Lack of guidance on contacting the secondary care team after recurrent seizures
Lack of discharge guidance on maintaining medication compliance despite prolonged seizure freedom
Lack of discharge guidance on notifying clinicians about recurrent seizures
This report raised 4 other concerns. They are not shown here because they do not form part of this recurring concern.
Responses linked to these concerns
Each statement is shown once, even when linked to more than one concern.
No linked response statements
No respondent-stated action or position is linked to these concerns in the published data.
East Sussex
Concerns raised3
Lack of prison staff training in managing long-term health conditions on the wings
Lack of individualized seizure care planning and monitoring
Deficit in national policy for managing and supporting prisoners with epilepsy and seizures
This report raised 3 other concerns. They are not shown here because they do not form part of this recurring concern.
Responses linked to these concerns
Each statement is shown once, even when linked to more than one concern.
Actions described in response An action is something a respondent says it has done, is doing, or plans to do in response to the concern raised.7
Action
Deliver First Aid at Work and Emergency First Aid training to identified prison staff, including responses to seizures.
Stated by HM Prison and Probation ServiceStatus unclearThe respondent did not make the status of this action clear when they made their response on 19 January 2024.
Action
Create and maintain a SystmOne care plan hub with epilepsy templates and review-template links.
Stated by Practice Plus Group Health And Rehabilitation Services LimitedStated completedThe respondent said that this action was complete when they made their response on 19 January 2024.
Action
Use SystmOne recalls to schedule, monitor and allocate long-term-condition reviews.
Stated by Practice Plus Group Health And Rehabilitation Services LimitedStated in progressThe respondent said that this action was in progress when they made their response on 19 January 2024.
Action
Review samples of epilepsy care plans for quality improvement and alignment with national guidelines.
Stated by Practice Plus Group Health And Rehabilitation Services LimitedStated in progressThe respondent said that this action was in progress when they made their response on 19 January 2024.
Action
Complete epilepsy reviews and agree individualized care plans with patients.
Stated by Practice Plus Group Health And Rehabilitation Services LimitedStated in progressThe respondent said that this action was in progress when they made their response on 19 January 2024.
Action
Audit and monitor long-term-condition care plans to maintain progress.
Stated by Practice Plus Group Health And Rehabilitation Services LimitedStated completedThe respondent said that this action was complete when they made their response on 19 January 2024.
Action
Train healthcare staff to use the care planning hub through workshops, updates and guidance.
Stated by Practice Plus Group Health And Rehabilitation Services LimitedStated completedThe respondent said that this action was complete when they made their response on 19 January 2024.
Respondent positions A position is what a respondent says about the concern when they do not describe a specific action.2
Position
Training prison staff to manage epilepsy and seizures is a matter for His Majesty’s Prison and Probation Service.
Stated by Practice Plus Group Health And Rehabilitation Services LimitedRedirects responsibilityThe respondent said that another organisation was responsible for deciding or taking action.
Position
Healthcare provider PPG is responsible for seizure care plans, diaries and long-term health management; prison staff facilitate its instructions.
Stated by HM Prison and Probation ServiceRedirects responsibilityThe respondent said that another organisation was responsible for deciding or taking action.
Inner North London
Concerns raised2
Lack of seizure-response training for prison staff
Unavailability of guidance for prisoners responding to a cellmate’s fit
This report raised 3 other concerns. They are not shown here because they do not form part of this recurring concern.
Responses linked to these concerns
Each statement is shown once, even when linked to more than one concern.
Actions described in response An action is something a respondent says it has done, is doing, or plans to do in response to the concern raised.1
Action
Schedule training for prison staff at HMP Pentonville on responding to fits.
Stated by HM Prison and Probation ServiceStated plannedThe respondent said that this action was planned when they made their response on 22 September 2023.
Respondent positions A position is what a respondent says about the concern when they do not describe a specific action.1
Position
Prison authorities, rather than healthcare, are responsible for addressing staff training and prisoner guidance on managing seizures and first aid.
Stated by Practice Plus GroupRedirects responsibilityThe respondent said that another organisation was responsible for deciding or taking action.
Surrey
Concerns raised6
Failure to document general practice assessment of febrile seizures
Failure to make timely referrals from general practice to secondary medical services for febrile seizures
Lack of coordinated response across clinicians to febrile seizure presentations
Delays in referral for assessment and investigation of febrile seizures
Failure to ensure febrile seizure diagnoses are supported by the child’s presentation
Failure to follow escalation guidance for complex febrile seizures
This report raised 4 other concerns. They are not shown here because they do not form part of this recurring concern.
Responses linked to these concerns
Each statement is shown once, even when linked to more than one concern.
Actions described in response An action is something a respondent says it has done, is doing, or plans to do in response to the concern raised.6
Action
Replace the epilepsy guideline with updated recommendations on referral and information and support after a first seizure.
Stated by National Institute for Health and Care ExcellenceStated completedThe respondent said that this action was complete when they made their response on 31 March 2023.
Action
Ask colleagues from seven NHS regions to share learning and available guidance with Integrated Care Boards for cascading to relevant healthcare professionals.
Stated by NHS EnglandStated plannedThe respondent said that this action was planned when they made their response on 31 March 2023.
Action
Review the JRCALC guidance on convulsions in children.
Stated by Association of Ambulance Chief ExecutivesStated completedThe respondent said that this action was complete when they made their response on 31 March 2023.
Action
Inform ambulance-service medical directors and lead paramedics about the death and ask them to review relevant JRCALC guidance and local pathways.
Stated by Association of Ambulance Chief ExecutivesStated completedThe respondent said that this action was complete when they made their response on 31 March 2023.
Action
Remind ambulance trusts about best-practice guidance on conveying children in face-to-face operational ambulance care.
Stated by Association of Ambulance Chief ExecutivesStated completedThe respondent said that this action was complete when they made their response on 31 March 2023.
Action
Continue reviewing the convulsions guidance through regular clinical-guideline review activity.
Stated by Association of Ambulance Chief ExecutivesStated plannedThe respondent said that this action was planned when they made their response on 31 March 2023.
Respondent positions A position is what a respondent says about the concern when they do not describe a specific action.6
Position
NICE is responsible for producing clinical guidance on the diagnosis, treatment and management of febrile seizures.
Stated by NHS EnglandRedirects responsibilityThe respondent said that another organisation was responsible for deciding or taking action.
Position
Existing national guidance is considered sufficient for managing febrile seizures.
Stated by NHS EnglandExisting arrangements considered sufficientThe respondent said that existing arrangements were sufficient, so no further action was needed.
Position
Existing national guidance and the Clinical Knowledge Summary are considered sufficient to support timely assessment, investigation and referral for febrile seizures.
Stated by National Institute for Health and Care ExcellenceExisting arrangements considered sufficientThe respondent said that existing arrangements were sufficient, so no further action was needed.
Position
RCEM will not lead development of further guidance because the project would be a significant undertaking, but can contribute with other organisations.
Stated by Royal College of Emergency MedicineUnable to actThe respondent said that a constraint prevented them from taking the relevant action.
Position
The convulsions-in-children guideline does not need improvement at present, subject to routine review and updating when new clinical evidence emerges.
Stated by Association of Ambulance Chief ExecutivesNo action considered necessaryThe respondent said that no further action was needed.
Position
AACE is the appropriate organisation to decide whether JRCALC guidelines for paramedic seizure management require updates.
Stated by NHS EnglandRedirects responsibilityThe respondent said that another organisation was responsible for deciding or taking action.
Manchester South
Concerns raised2
Lack of authoritative guidance on monitoring people with refractory epilepsy
Lack of guidance on the availability and use of assistive technology for monitoring people at high risk from seizures
This report raised 2 other concerns. They are not shown here because they do not form part of this recurring concern.
Responses linked to these concerns
Each statement is shown once, even when linked to more than one concern.
Actions described in response An action is something a respondent says it has done, is doing, or plans to do in response to the concern raised.2
Action
Pass the stated concerns about monitoring refractory epilepsy and assistive technology to the guideline committee to inform its work.
Stated by National Institute for Health and Care ExcellenceStated completedThe respondent said that this action was complete when they made their response on 22 January 2020.
Action
Update the epilepsy guideline by reviewing evidence on seizure-detection technologies, epilepsy-related mortality risk factors, and interventions reducing seizure-related mortality.
Stated by National Institute for Health and Care ExcellenceStated in progressThe respondent said that this action was in progress when they made their response on 22 January 2020.
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