Epilepsy, 19 Sep 2013 – 19 Jun 2026

Epilepsy-related Prevention of Future Deaths reports

Last 3 years7 Sep 2023 – 7 Sep 2026

Custom range

Based on PFD publication date. Dates are available up to the published snapshot: 7 Sep 2026. Preset periods end on this date.

28All reports 8SUDEP 20Non-SUDEP

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.

HM Prison and Probation Service1
Lewisham and Greenwich NHS Trust1
NHS England1
Practice Plus Group1
Royal College of General Practitioners1
Royal College of Physicians1
Thameside Prison1

Most commonly raised concerns

All classifications 28 reports 7 Sep 2023 – 7 Sep 2026

  1. Unreliable seizure care and managementControls dedicated to recognising, assessing, monitoring, responding to and managing seizures are not reliably provided.3 reportsSelected
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. Incomplete, inaccurate or unavailable clinical and care recordsClinical and care records are incomplete, inaccurate, inconsistent, unavailable or otherwise unreliable for safe care.2 reportsSelected
  9. 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
  10. 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
  11. Unreliable hospital discharge processesHospital discharge does not reliably bring together planning, clinical readiness, relevant organisations, safe execution and required follow-up.2 reportsSelected
  12. 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
  13. 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
  14. Unreliable patient observation arrangementsPatient observation systems do not reliably set, support and deliver the observation level required by assessed safety risk.2 reportsSelected
  15. 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
  16. 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
  17. 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

Classification: all classificationsRecurring concern: Unreliable hospital discharge processes
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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.

  1. Inner South London

    AI-generated summary

    Mark Robert Smith · Prevention of Future Deaths report

    This summary was generated using AI from the published report. Please read the original report for the complete account.

    Report summary

    Mark Robert Smith, who was detained at HMP Thameside, died after an epileptic seizure led to cardiac arrest. The report describes concerns about medication prescribing and administration, hospital-to-prison discharge and communication, access to his cell, observation arrangements and records, staffing, and the lack of equipment for resuscitation.

    Read the report on judiciary.uk

    Source evidence

    How this individual concern was interpreted

    PFD Monitor created a concise, searchable interpretation from the report wording shown below.

    PFD Monitor interpretation

    Failure to coordinate prison discharge through an MDT and relevant prison healthcare liaison

    Wider context from the report

    “(2) I remain concerned a similar situation could arise as did in Mark’s case regarding a discharge back to prison from QEH without an MDT meeting despite repeated requests from prison healthcare and there could be a risk to life. I note PFD evidence provided regarding improved liaison between QEH and the prison GP but note no reference to liaison between QEH and the head of the healthcare in prison, who visited QEH twice in Mark’s case. Further, as recently as 2025 an incident occurred when there was a lack of understanding at QEH around the limited provision in healthcare in prison. I am concerned as to how awareness of the limits of prison healthcare will be disseminated on a continuing basis to new and locum staff at QEH. (QEH and Practice Plus Group) ”

    Source location

    Mark Robert Smith · Prevention of Future Deaths report
    Page 4 · concerns

    Open source report
  2. East London

    AI-generated summary

    Andrew Ewin-Ripp · Prevention of Future Deaths report

    This summary was generated using AI from the published report. Please read the original report for the complete account.

    Report summary

    Andrew Ewin-Ripp, who had epilepsy, suffered a fit at home on 1 November 2022, was found in cardiac arrest, and died in hospital on 4 November 2022. The reported cause of death was sudden unexpected death in epilepsy (SUDEP). Concerns included lengthy waits for neurology care, the absence of clear guidance and systems for monitoring, discharge information, and urgent review after seizure recurrence.

    Read the report on judiciary.uk

    Source evidence

    How this individual concern was interpreted

    PFD Monitor created a concise, searchable interpretation from the report wording shown below.

    PFD Monitor interpretation

    Failure to require practitioners to pass essential epilepsy information to patients on discharge

    Wider context from the report

    “There are believed to be around 500-600 SUDEP deaths in the UK each year. SUDEP deaths are common in young adults. The waiting times for outpatient neurology appointments is in the region of 9 months for the trust concerned. The inquest heard from an independent expert that it is not unusual to have waiting times of more than 6 months for outpatient neurology appointments. In the context of these lengthy waiting times, the following matters were of particular concern: (1) GP practices are not required to carry out annual reviews of epilepsy patients, as they are, for other chronic diseases. The independent consultant neurologist considered that annual reviews by general practitioners would provide an excellent safety net to prevent future SUDEP deaths. The reviews could incorporate checks on compliance with medication; reviews of any seizure activity and reminder of ways to reduce the risk of seizures. (2) There is clear national guidance in relation to how quickly patients should be seen following a first seizure, but no clear guidance around the longer-term monitoring of patients with epilepsy. How soon after the last seizure is it safe to discharge a patient? There is no clear guidance on this. (3) After discharge from the secondary care team, there was no clear guidance provided in relation to the importance of maintaining full compliance with medication even if seizure free for a very long period; the importance of notifying the GP and/or the secondary care team about the recurrence of any seizure activity or clear guidance on how best to make contact with the secondary care team in the event of recurrence of seizures. There was no system in place, or guidance, requiring practitioners to ensure that this essential information is passed to patients on discharge. (4) There was no care pathway for incorporating urgent reviews in neurology clinics in response to patients reporting concerns, such as a return of seizures or not tolerating medication. ”

    Source location

    Andrew Ewin-Ripp · Prevention of Future Deaths report
    Page 3 · concerns

    Open source report

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Classification: all classifications7 Sep 2023 – 7 Sep 2026 (Publication date)Recurring concern: Unreliable hospital discharge processes
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