Epilepsy, 19 Sep 2013 – 19 Jun 2026
Epilepsy-related Prevention of Future Deaths reports
All dates19 Sep 2013 – 7 Sep 2026
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.
Most commonly raised concerns
Non-SUDEP 68 reports 19 Sep 2013 – 7 Sep 2026
Reset- Incomplete, inaccurate or unavailable clinical and care recordsClinical and care records are incomplete, inaccurate, inconsistent, unavailable or otherwise unreliable for safe care.5 reportsSelected
- Unsafe medication administrationA recurring failure of the medication-administration system to ensure that medicines are administered safely, accurately, promptly and as prescribed.5 reportsSelected
- Inadequate driver licensing controls for road safetyDriver licensing systems do not reliably identify, record, review or restrict drivers whose inexperience, health or vehicle-related risk requires additional safeguards.4 reportsSelected
- Unreliable seizure care and managementControls dedicated to recognising, assessing, monitoring, responding to and managing seizures are not reliably provided.4 reportsSelected
- Failure to communicate clinically important information reliably between care servicesRecurring concern that clinically important guidance, decisions and patient information are not kept accurate, current and available to the clinicians and emergency services who need them.3 reportsSelected
- Failure to ensure clinical investigation results are reliably available, interpreted and acted uponRecurring deficiency in the end-to-end management of clinical investigation results, including their availability, transmission, checking, review, interpretation, follow-up and escalation when needed.3 reportsSelected
- Failure to provide required medication promptly when clinically neededThe anchor identifies delayed prescribing of a patient's usual medication after an unexpected admission, while another report identifies delayed prescribing and non-provision of urgent therapeutic medication. These support a recurring concern about timely provision of clinically required medication rather than only the anchor's admission or prescribing-step failure.3 reportsSelected
- Insufficient police training for safe recognition and response to mental-health and behaviour-related medical crisesReports identify insufficient police training to recognise and respond safely to mental-health crises and behaviour-related medical emergencies.3 reportsSelected
- Insufficient qualified healthcare staffing capacityHealthcare services lack enough appropriately qualified staff to provide the required clinical coverage and patient care safely for the workload, acuity and specialist needs.3 reportsSelected
- Unreliable DVLA medical fitness notification arrangementsThe anchor identifies limited professional awareness and uncertain effectiveness of guidance for notifying the DVLA about medically relevant driving risks. A different report identifies clinicians failing to advise patients with cough syncope to stop driving and notify the DVLA, while another identifies failure to notify the DVLA of relevant medical conditions. These support the named DVLA medical-fitness notification process rather than guidance awareness alone.3 reportsSelected
- Electronic patient records failing to make relevant clinical information available and actionableRecurring concern that electronic patient-record systems do not reliably present, preserve, share or prompt action on clinically relevant information across the patient’s care.2 reportsSelected
- Failure to conduct required welfare checks on people in distressThe anchor identifies a risk that care home staff will not check a resident in distress, while a different canonical report identifies failure to conduct a later welfare check on a person left in potential medical distress. Together these support a recurring concern about welfare checks not being completed when a person may require assistance.2 reportsSelected
- Failure to identify and address recurring safety issues through organisational learningDifferent reports identify failures of reporting, review and learning arrangements to retain, recognise and address substantive or recurring patient-safety issues, rather than merely failures to complete one specific corrective action.2 reportsSelected
- Failure to reliably learn from medication incidents and implement safeguardsThe medication incident learning process is unreliable: incidents are not consistently followed up or reviewed to identify, communicate and implement safeguards that protect patients from recurrence.2 reportsSelected
- Failure to reliably recognise and respond to acute clinical deteriorationClinical deterioration is not reliably recognised, monitored, escalated and acted upon with the urgency it requires.2 reportsSelected
- Failure to seek medical attention when a person's condition warrants itReports identify an unreliable escalation control in which care staff or other responders do not promptly seek medical or paramedic assistance when a person's injury, pain, fall or deterioration warrants clinical attention.2 reportsSelected
- Inadequate control of illicit substance use and supply in secure institutionsThe anchor identifies an ongoing failure to mitigate illicit substance entry, distribution and use in a secure hospital, while assertions from different reports identify continuing illicit-drug influx, widespread access and weak supply-reduction controls in prisons. These distinct manifestations support a bounded concern about controlling illicit substances in secure institutional settings, rather than only room searches, drug testing or a prison-specific strategy.2 reportsSelected
- Inadequate controls on contraband mobile phones in prisonsDifferent reports identify failures in the prison control system for preventing and mitigating access to contraband mobile phones, including their easy availability to prisoners and their use to facilitate drug dealing and other prison-security risks.2 reportsSelected
- Inadequate recording of medication prescribing decisionsReports identify unreliable medication prescribing records that can obscure prescribing status, rationale, changes or safety-critical decisions and thereby allow unsafe medication to be prescribed or administered.2 reportsSelected
- Inadequate staff competence to provide first aidReports identify an unsafe first-aid capability condition across healthcare, care, custody and other staff. The recurring concern is the unreliability of staff competence to recognise emergencies and provide appropriate first aid, rather than any single training, refresher, assessment or practical-performance failure.2 reportsSelected
- Unreliable Care Programme Approach care coordinationReports identify different failures within the named Care Programme Approach, including the absence of a structured medication review and failures to allocate coordinators, complete required reviews, maintain care plans and follow up patients. Together these support a recurring concern with the reliable operation of CPA care coordination rather than medication review alone.2 reportsSelected
- Unreliable RIO clinical-record functionsThe anchor identifies an unclear timeliness standard for RIO entries, while different reports identify failures of RIO to support complete information capture, cross-team access and usable observation records. Together these support a recurring concern with the reliability of the named RIO clinical-record system rather than only one entry-timing or documentation manifestation.2 reportsSelected
- Unreliable communication of patient-care information between clinical staffClinical staff responsible for the same patient's care do not reliably exchange relevant information about care, treatment and risk.2 reportsSelected
- Unreliable escalation by care staff for required medical attentionCare staff do not reliably recognise and escalate deterioration, pain or other safety concerns to obtain timely medical assessment or advice.2 reportsSelected
- Unreliable healthcare patient transfer processesHealthcare transfers do not reliably provide the procedures, responsibility, documentation and clinical information needed for safe movement and continuity of care.2 reportsSelected
- Unreliable hospital discharge processesHospital discharge does not reliably bring together planning, clinical readiness, relevant organisations, safe execution and required follow-up.2 reportsSelected
- Unreliable implementation of medication changesReports identify different failures in the medication-change process, including failure to act on a prescribed reduction, failure to ensure carers acknowledge changes, and difficulty implementing specialist-directed changes accurately. Together these support the wider unsafe condition that medication changes are not reliably implemented across prescribing, communication and follow-up controls.2 reportsSelected
- Unreliable medication dosage verification and communicationReports identify unsafe failures to ensure that medication dosages are accurately verified, clarified and communicated across prescribing, dispensing and administration activities.2 reportsSelected
- Unreliable mental health referral pathwaysReports identify different failures within the mental health referral process, including referrals not being made when indicated, received referrals not being actioned, and frontline practitioners lacking clarity about when and where to refer. These support a recurring concern with the reliability of mental health referral pathways rather than any single referral or awareness failure.2 reportsSelected
- Unreliable patient observation arrangementsPatient observation systems do not reliably set, support and deliver the observation level required by assessed safety risk.2 reportsSelected
- Unreliable review and action on clinically significant incoming correspondenceReports identify failures across the incoming clinical-correspondence process, including failure to identify GP medication-review requests, failure to bring action-requiring correspondence to medical staff, and correspondence being filed without GP review or action. The shared unsafe condition is that clinically significant correspondence may not reliably reach the responsible clinician or trigger the required clinical response.2 reportsSelected
- Unreliable safety CCTV monitoring systemsDifferent reports identify failures in the operation of CCTV used as a safety control, including absent staff access arrangements, inadequate coverage, non-working cameras, insufficient monitoring and unclear staff instructions. Together these support the reliability of safety CCTV monitoring as the parent concern rather than any single access, coverage, equipment or training failure.2 reportsSelected
- Unsafe medication prescribingReports identify unsafe prescribing decisions in which the medication, indication, dose or relevant clinical circumstances are not adequately evaluated before prescribing.2 reportsSelected
Reports matching this classification
19 Sep 2013 – 7 Sep 2026 · 68 reports
ResetShowing all concerns and their linked actions and positions from reports in this date range for non-sudep. Select a recurring concern above to narrow the evidence.
Actions and positions describe what recipients stated in published responses. Select a statement to read its source wording.
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Concerns raised3
Failure to inform the DVLA of medical conditions relevant to safe driving
Failure to advise drivers of the legal requirement to notify the DVLA of medical conditions
Failure to advise drivers of the impact of their medical conditions on safe driving
Responses linked to these concernsEach 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
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Action
Write to patients with epilepsy or Parkinson’s disease to remind them of DVLA notification responsibilities and identify current drivers for record updates.
Stated by Emsworth Surgery
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Concerns raised4
Oxygen-saturation monitoring failing to detect deterioration when oxygen levels do not deplete
Inadequate treatment of total body potassium depletion with gastroenteritis resuscitation
Failure to recognise total body potassium depletion in unwell children with myopathies
Atypical presentation of respiratory distress in children with myopathies weakened by low potassium
Responses linked to these concernsEach 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.5
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Action
Update paediatric guidelines to strengthen recognition, senior assessment, monitoring and management of children with myopathies and hypokalaemia, including STRS contact indications.
Stated by Medway NHS Foundation Trust -
Action
Discuss with the British Paediatric Surveillance Unit the suggestion of hosting a webinar on the case and NICE fluid-replacement guidance.
Stated by Royal College of Paediatrics and Child Health -
Action
Share the report with the British Paediatric Neurology Association to raise awareness of recognising and managing hypokalaemia in patients with reduced muscle mass.
Stated by Royal College of Paediatrics and Child Health
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Action
Implement and publish a paediatric guideline algorithm for recognising and managing low potassium.
Stated by Medway NHS Foundation Trust -
Action
Highlight abnormal electrolyte results during handover and escalate them to a consultant for oversight.
Stated by Medway NHS Foundation Trust
Respondent positions A position is what a respondent says about the concern when they do not describe a specific action.3
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Position
NICE considers existing general guidance on assessment, monitoring, and altering care as indicated appropriate.
Stated by Department of Health and Social Care
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Position
Existing STRS guidance does not require referral for every child with serum potassium below 3.0.
Stated by Medway NHS Foundation Trust -
Position
Dilute peripheral potassium replacement remains a safe first-line option in appropriately selected district general hospital patients.
Stated by Medway NHS Foundation Trust
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Concerns raised2
Inward-opening doors in confined spaces
Lack of widespread appreciation of the risks of inward-opening doors in confined spaces
Responses linked to these concernsEach 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
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Action
Update relevant printed information to extend advice from bathroom doors to doors securing any confined space.
Stated by British Epilepsy Association (working name: Epilepsy Action -
Action
Amend online safety information to extend advice from bathroom doors to doors securing any confined space.
Stated by British Epilepsy Association (working name: Epilepsy Action -
Action
Monitor the number and type of enquiries on this topic and adapt responding materials accordingly.
Stated by British Epilepsy Association (working name: Epilepsy Action
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Action
Publish an Epilepsy Today article raising awareness of blocked-door risks and signposting available home-adaptation funding sources.
Stated by British Epilepsy Association (working name: Epilepsy Action -
Action
Notify healthcare professional contacts about the issue and the organisation’s actions to guide appropriate patient advice.
Stated by British Epilepsy Association (working name: Epilepsy Action -
Action
Share learning about the death’s circumstances with paediatric specialty groups and OPEN UK to disseminate warnings about these risks.
Stated by Royal College of Paediatrics and Child Health
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Concerns raised1
Potential inadequacy of driving-licence surrender time frames for seizure risk
Responses linked to these concernsEach 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
Ask the medical advisory panel to review the required seizure-free period before driving licence reinstatement.
Stated by Driver and Vehicle Licensing Agency
Respondent positions A position is what a respondent says about the concern when they do not describe a specific action.1
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Position
The 12-month seizure-free standard and treatment, appointment and reporting declarations are considered sufficient to ensure only low-risk drivers receive licences.
Stated by Driver and Vehicle Licensing Agency
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Concerns raised1
Lack of a statutory procedure for checking criminal convictions outside the UK
Responses linked to these concernsEach 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
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Action
Publish advice on obtaining overseas criminal-record checks and link to relevant Home Office guidance on the DBS website.
Stated by Disclosure and Barring Service
Respondent positions A position is what a respondent says about the concern when they do not describe a specific action.3
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Position
Further statutory obligations concerning overseas criminal-record checks are matters for the Home Office and Parliament.
Stated by Disclosure and Barring Service
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Position
Reliable international data flows cannot be established because necessary agreements and cooperation with overseas law-enforcement agencies are unavailable.
Stated by Disclosure and Barring Service -
Position
Existing statutory arrangements allow overseas criminality information to be disclosed, while employers can obtain further overseas checks as part of recruitment risk assessment.
Stated by Disclosure and Barring Service
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Concerns raised3
Lack of effective follow-up action when high-risk patients with learning disabilities disengage
Lack of a clear escalation process for increased risks that cannot be easily addressed
Lack of a structured medication review within the overall Care Plan Approach
Responses linked to these concernsEach statement is shown once, even when linked to more than one concern.
No linked response statementsNo respondent-stated action or position is linked to these concerns in the published data.
-
Concerns raised8
Failure to communicate previous hoarding incidents to the GP
Inconsistent reporting of absconding incidents
Unclear escalation of absconding incidents to MDT review
Failure of the system for monitoring compliance with prescribed medication
Inadequate monitoring arrangements for residents with previous incidents of absconding
Unclear reporting of seizure-related incidents to relevant bodies
Failure to notify relevant professionals of doubt about medication compliance
Failure to safely supervise bathing for residents with a known risk of seizure
Responses linked to these concernsEach 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.8
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Action
Establish direct liaison and incident-notification arrangements with GPs, mental health services, care teams, and police for relevant health and absconding events.
Stated by PENTRE LODGE CARE HOME LIMITED -
Action
Review care-note wording for medication non-adherence and hoarding incidents.
Stated by PENTRE LODGE CARE HOME LIMITED -
Action
Inform the multidisciplinary team or make referrals after absconding incidents and conduct six-weekly or more frequent monitoring visits with placement review where needed.
Stated by PENTRE LODGE CARE HOME LIMITED
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Action
Review the medication procedure and add immediate post-medication room checks to the Medication Policy.
Stated by PENTRE LODGE CARE HOME LIMITED -
Action
Introduce individual medication-room administration behind a closed door and conduct rigorous face-to-face medication training for all staff.
Stated by PENTRE LODGE CARE HOME LIMITED -
Action
Introduce assisted or escorted bathroom use, showering preference, specialist epilepsy input, and associated seizure-safety measures for residents with diagnosed seizures.
Stated by PENTRE LODGE CARE HOME LIMITED -
Action
Review all residents’ physical health and seizure histories.
Stated by PENTRE LODGE CARE HOME LIMITED -
Action
Review seizure-related risk assessments and care plans, implement bathing and showering measures, and provide specialist training after receiving clinical confirmation.
Stated by PENTRE LODGE CARE HOME LIMITED
Respondent positions A position is what a respondent says about the concern when they do not describe a specific action.2
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Position
As an open facility, the home cannot prevent residents leaving until legally required deprivation-of-liberty and capacity documentation is completed.
Stated by PENTRE LODGE CARE HOME LIMITED
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Position
Existing room checks were considered to require little improvement beyond immediate checks when medication is found.
Stated by PENTRE LODGE CARE HOME LIMITED
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Concerns raised3
Lack of GP practice records of recent medication prescribing
Failure to identify high-risk status when determining consultant appointment urgency
Failure of clinical staff to seek urgent neurology guidance on ongoing prescribing
Responses linked to these concernsEach statement is shown once, even when linked to more than one concern.
No linked response statementsNo respondent-stated action or position is linked to these concerns in the published data.
-
Concerns raised4
Failure of station staff systems of work to position ticket-barrier monitoring where irregular passenger behaviour is more likely to be observed
Lack of alarms at platform-end barriers
Lack of ease of CCTV monitoring
Lack of a system for staff to alert and track individuals of concern on CCTV
Responses linked to these concernsEach 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.4
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Action
Review and adapt suicidal-behaviour training to cover customer behaviour at gatelines and ticket halls, then implement the changes.
Stated by London Underground Limited -
Action
Investigate other metros’ experience of platform-end alarm or detection technology and assess whether it can be safely applied to the LU network.
Stated by London Underground Limited -
Action
Extend remote station accessibility systems to include CCTV, public address, fire detection and gateline systems.
Stated by London Underground Limited
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Action
Continue evaluating camera-based detection technologies and equipment that could alert staff to dangerous or potentially suicidal behaviour.
Stated by London Underground Limited
Respondent positions A position is what a respondent says about the concern when they do not describe a specific action.4
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Position
Alarming platform-end barriers would make no beneficial difference to preventing unauthorised access to the track area.
Stated by London Underground Limited
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Position
Platform-end alarms are constrained by delayed manual checking, likely false alarms and unacceptable disruption and risks to train operations.
Stated by London Underground Limited -
Position
Existing CCTV arrangements are considered appropriate for local congestion management, incident support and incident review rather than continuous real-time tracking.
Stated by London Underground Limited -
Position
Continuous CCTV monitoring is not possible, and behavioural detection technologies are considered too immature for reliable London Underground operation.
Stated by London Underground Limited
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Concerns raised7
Insufficient training on atypical seizure and post-seizure behaviour
Insufficient sharing and requesting of information needed to assess restraint safety
Lack of guidance defining monitoring requirements for restrained detainees
Reliance on breathing sounds as insufficient monitoring of prone restrained detainees
Insufficient emphasis on heightened risks of prone restraint when multiple breathing-affecting factors are present
Inconsistent understanding of when to commence CPR for abnormal or distressed breathing
Failure to prioritise assessment of detainees after control is obtained over speedy removal from the scene
Responses linked to these concernsEach 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.3
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Action
Include an epilepsy video in initial officer training and refresh it during refresher training every three years.
Stated by Sussex Police -
Action
Teach breathing monitoring through sound, touch, and observation of rib-cage movement, with annual refresher coverage.
Stated by Sussex Police -
Action
Train and assess learners monitoring an unconscious casualty lying face down, including differences in visible chest movement.
Stated by Sussex Police
Respondent positions A position is what a respondent says about the concern when they do not describe a specific action.5
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Position
Basic first-aid training provides officers with knowledge and skills suitable for their policing role.
Stated by Sussex Police
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Position
Changes to nationally agreed police training packages require approval through national policing bodies rather than unilateral force action.
Stated by Sussex Police -
Position
Officers cannot reasonably be expected to possess medical professionals’ knowledge because attempting untrained interventions could pose excessive risks.
Stated by Sussex Police -
Position
Updating the national restraint guidance and training products is the responsibility of the SDAR working group.
Stated by College of Policing -
Position
Individual police forces choose suitable tactical options and deliver them through local Personal Safety Training programmes.
Stated by College of Policing
