Epilepsy, 19 Sep 2013 – 19 Jun 2026

Epilepsy-related Prevention of Future Deaths reports

All dates19 Sep 2013 – 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.

90All reports 19SUDEP 68Non-SUDEP

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.

HM Prison and Probation Service1
Pentonville Prison1
Practice Plus Group1

Most commonly raised concerns

SUDEP 19 reports 19 Sep 2013 – 7 Sep 2026

Reset
  1. Unreliable seizure care and managementControls dedicated to recognising, assessing, monitoring, responding to and managing seizures are not reliably provided.5 reportsSelected
  2. Failure to provide timely clinical follow-up after medication prescribingPrescribed medication is not reliably followed up for effectiveness, safety, collection, adherence and patient response.2 reportsSelected
  3. 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
  4. Incomplete, inaccurate or unavailable clinical and care recordsClinical and care records are incomplete, inaccurate, inconsistent, unavailable or otherwise unreliable for safe care.2 reportsSelected
  5. Unreliable hospital discharge processesHospital discharge does not reliably bring together planning, clinical readiness, relevant organisations, safe execution and required follow-up.2 reportsSelected
  6. Unreliable management of medication doses not takenThe anchor identifies missing guidance for monitoring prescribed medication that self-administering patients do not take when dispensed. A different report identifies inconsistent procedures for responding when service users refuse or do not take medication. Together these support a recurring concern with the reliability of detecting, monitoring and escalating omitted or refused medication doses, rather than a concern limited to one guidance document or one home's procedure.2 reportsSelected
  7. Unsafe cell-sharing decisions for prisonersRecurring deficiencies in the prison cell-sharing risk system can leave prisoners exposed to unsafe pairings or prevent them from understanding changes affecting their cell-sharing status.2 reportsSelected
  8. 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

Reports matching this classification and recurring concern

19 Sep 2013 – 7 Sep 2026 · 2 reports

Classification: sudepRecurring concern: Unsafe interoperability between prison custody and healthcare procedures
Reset

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. East Sussex

    AI-generated summary

    Trevor Alan MONERVILLE · 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

    Trevor Alan Monerville, who had been detained at HMP Lewes, was found unresponsive in his cell on 18 April 2021 and died after suffering from epilepsy and non-epileptic attack disorder. The principal concerns were inadequate monitoring and management of his epilepsy after the ACCT closed, poor communication and information-sharing between healthcare, prison staff and family, and insufficient staff training in managing epilepsy and seizures.

    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

    Inadequate communication about prisoners’ health conditions

    Wider context from the report

    “b. Communication between healthcare and prison staff especially when Trevor was returned to the wing, between the prison staff and family, briefing by prison managers to officers on the wing about Trevor’s condition were all inadequate. Evidence was heard about the lack of integration of various IT systems which contributed to poor communication. In spite of the evidence from PPG regarding the sensitivity of medical records which should not be disclosed to the prison staff, I remain concerned that there was no effective monitoring and management of Trevor on the wing once the ACCT was closed. There was no mechanism in place for prison and healthcare staff to report their concerns about Trevor’s non compliance with taking his medication to Security, thus preventing the cell from being searched for retained medication. ”

    Source location

    Trevor Alan MONERVILLE · Prevention of Future Deaths report
    Page 2 · concerns

    Open source report

    Source evidence

    How this respondent action was interpreted

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

    PFD Monitor interpretation

    Work with NHS England to clarify routine health-information sharing and processes for risk or safeguarding concerns.

    Verbatim wording from the response

    “HMPPS recognises that, information sharing is vital to effective health management of people in prison and is working closely with NHSE to increase staff confidence and support effective information sharing by offering clarity about the general and routine sharing of health information and where risk/safeguarding concerns have been raised.”

    Source location

    Response from HM Prison and Probation Service
    Page 2 · response
    Published 19 January 2024

    Open published response

    Source evidence

    How this respondent action was interpreted

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

    PFD Monitor interpretation

    Implement Regional Multi Professional Complex Case Clinic escalation for the most complex patients.

    Verbatim wording from the response

    “Practice Plus Group operates an integrated healthcare model. Any patients pending transfer back to the main wing with ongoing needs are to be discussed at the Multi Professional Complex Case Clinic (MPCCC) prior to transfer. This allows oversight of all departments within the integrated team and a holistic complex care plan to be created. The MPCCC is led by the GP, attended by all clinical leads, and any relevant staff involved in patient care. For individual cases prison partners may be invited to attend and a care plan created with a named coordinator allocated. Practice Plus Group has now implemented a further point of escalation to Regional MPCCC. For the most complex of patients, attendees will include healthcare, prison staff and, on occasion, representatives from NHS England.”

    Source location

    Response from Practice Plus Group
    Page 4 · response
    Published 19 January 2024

    Open published response

    Source evidence

    How this respondent position was interpreted

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

    PFD Monitor interpretation

    Practice Plus Group cannot resolve integration of healthcare and prison IT systems because SystmOne is commissioned by NHS England and medical records are confidential.

    Verbatim wording from the response

    “As to lack of integration of various systems, this is not an issue that Practice Plus Group can resolve. SystmOne is commissioned by NHS England and Practice Plus Group is commissioned to use SystmOne. As with patients in the community, medical records are highly sensitive and personal to the individual. They are not shared with prison staff for reasons of medical confidentiality.”

    Source location

    Response from Practice Plus Group
    Page 4 · response
    Published 19 January 2024

    Open published response

    Source evidence

    How this respondent position was interpreted

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

    PFD Monitor interpretation

    Existing information-sharing protocols and weekly meetings are considered appropriate for communication and management of complex safety concerns.

    Verbatim wording from the response

    “There are Information Sharing protocols in place, as directed by national policy, which underpin the exchange of information between healthcare and prison staff. There are several regular meetings involving healthcare and prison staff where individual issues are raised and addressed, including the Safety Intervention Meeting and Multi-Disciplinary Complex Case Clinic, both of which are held weekly.”

    Source location

    Response from HM Prison and Probation Service
    Page 1 · response
    Published 19 January 2024

    Open published response
  2. Inner North London

    AI-generated summary

    David Andrew Llewellyn O’GARRO · 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

    David Andrew Llewellyn O’Garro suffered a sudden death in epilepsy while occupying a single cell at HMP Pentonville, with nobody present to raise the alarm during what was likely his final seizure. Concerns included the failure to complete or locate a cell sharing risk assessment and a lack of clarity and shared understanding among prison staff about ensuring prisoners with epilepsy had a cellmate.

    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 ensure reliable communication of healthcare cell-sharing instructions to prison officers

    Wider context from the report

    “The nurse who carried out the first reception screen of Mr O’Garro did not complete a cell sharing risk assessment (CSRA) indicating that he should share a cell, though she told me she knew that a person with epilepsy should not occupy a cell alone. She completed the computer record indicating that he was fit for any cell occupancy. No HMP Pentonville CSRA was ever found for Mr O’Garro. During the inquest: - one prison nurse appeared at times completely unfamiliar with the CSRA, and wholly unclear as to how to ensure (in 2012 or now) that prisoners with epilepsy would have a cellmate; - a prison doctor said that a locum doctor working at the prison might not even complete a CSRA because s/he would not know how the prison works; - one of the prison officers was unsure how a message from healthcare regarding cell sharing would reach any particular officer if s/he was away on the day it was entered into the observation book. Whilst I appreciate that you are making significant changes to the reception process for new prisoners, there appeared at inquest to be a lack of clarity and shared understanding among those working at HMP Pentonville. ”

    Source location

    David Andrew Llewellyn O’GARRO · Prevention of Future Deaths report
    Page 2 · concerns

    Open source report

Export data

Your Excel file will include all 2 matching reports.

Classification: sudep19 Sep 2013 – 7 Sep 2026 (Publication date)Recurring concern: Unsafe interoperability between prison custody and healthcare procedures
Choose the tabs to include