Epilepsy, 19 Sep 2013 – 19 Jun 2026
Epilepsy-related Prevention of Future Deaths reports
Last 3 years7 Sep 2023 – 7 Sep 2026
Select SUDEP or Non-SUDEP to filter concerns and reports. 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
All classifications 28 reports 7 Sep 2023 – 7 Sep 2026
- Unreliable seizure care and managementControls dedicated to recognising, assessing, monitoring, responding to and managing seizures are not reliably provided.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.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 secure and control medicationReports identify medication as remaining accessible, unsecured or inadequately controlled, creating risks of misuse, overdose, theft or access by people other than the intended patient.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 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.2 reportsSelected
- Incomplete, inaccurate or unavailable clinical and care recordsClinical and care records are incomplete, inaccurate, inconsistent, unavailable or otherwise unreliable for safe care.2 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.2 reportsSelected
- Unreliable communication of critical medication information to GPsRecurring deficiency in the medication-information exchange process between services and GPs, including information needed to maintain supplies, assess prescribing safety and support continuity of treatment.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 inter-agency information sharing for coordinated careThe anchor identifies absent agreed communication means and inaccessible shared patient information between mental health agencies. Other canonical reports identify relevant risk information not being shared between agencies and poor inter-agency information sharing preventing coordinated care, supporting a recurring concern with the reliability of inter-agency care information sharing rather than only the anchor's repository or communication-channel 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
- Unsafe interoperability between prison custody and healthcare proceduresReports identify failures in the bounded interface between prison custody, contracted custody providers and healthcare services, where procedures, responsibilities and safety-relevant information do not operate together reliably.2 reportsSelected
- Unsafe medication administrationA recurring failure of the medication-administration system to ensure that medicines are administered safely, accurately, promptly and as prescribed.2 reportsSelected
Reports matching this recurring concern
7 Sep 2023 – 7 Sep 2026 · 2 reports
ResetOnly 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.
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Concerns raised1
Risk of discontinued or essential seizure-control medication being incorrectly administered
This report raised 7 other concerns. They are not shown here because they do not form part of this recurring concern.
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.12
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Action
Strengthen escalation pathways by referring complex medicines-reconciliation issues to senior clinicians and SCFT pharmacy support.
Stated by Sussex Community NHS Foundation Trust -
Action
Provide staff with Plexus shared-care-record access for real-time GP medication summaries.
Stated by Sussex Community NHS Foundation Trust -
Action
Revise and implement UCR referral documentation to require receiving agencies to reconcile medicines with prescribers and pharmacies and clarify that UCR MAR charts are for SCFT staff only.
Stated by Sussex Community NHS Foundation Trust
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Action
Strengthen referral-pathway expectations that medicines reconciliation is confirmed when care responsibility transfers.
Stated by Sussex Community NHS Foundation Trust -
Action
Update the MAR chart SOP with guidance on discontinued medicines remaining in patients’ homes and mandatory GP second checks for discrepancies.
Stated by Sussex Community NHS Foundation Trust -
Action
Deliver staff briefings and training aligned with the revised MAR chart SOP after approval.
Stated by Sussex Community NHS Foundation Trust -
Action
Embed pharmacy support within the UCR and General Virtual Ward model for complex or unclear medication regimes.
Stated by Sussex Community NHS Foundation Trust -
Action
Integrate GP Connect into the digital platform and current practice to verify medicines and identify recent changes.
Stated by Coastal Homecare (Hove) Ltd. -
Action
Require all staff to complete additional Epilepsy Awareness training.
Stated by Coastal Homecare (Hove) Ltd. -
Action
Attend Local Authority training on epilepsy awareness, seizure management, and buccal midazolam.
Stated by Coastal Homecare (Hove) Ltd. -
Action
Require staff to cross-check medicines against prescribing records, administration records, and referral documentation during handover.
Stated by Coastal Homecare (Hove) Ltd. -
Action
Record each person’s dispensing pharmacy and require escalation to relevant healthcare professionals when medication discrepancies or uncertainties arise.
Stated by Coastal Homecare (Hove) Ltd.
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Concerns raised1
Failure to obtain and supply prescribed anti-epileptic medication promptly
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 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
Inspect the pharmacy’s systems for managing out-of-stock medicines and supply issues.
Stated by General Pharmaceutical Council
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
The pharmacy’s staged process sought medication supplies, and referral to other pharmacies followed unsuccessful attempts to obtain the prescribed brand.
Stated by Midway Pharmacy
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Position
National medication shortages prevented the pharmacy from obtaining the prescribed Tegretol medication and require a national resolution.
Stated by Midway Pharmacy
