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
Practice Plus Group1
Springfield Medical Centre1

Most commonly raised concerns

SUDEP 19 reports 19 Sep 2013 – 7 Sep 2026

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  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: Unreliable management of medication doses not taken
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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. 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

    Lack of a mechanism to report medication non-compliance to Security

    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

    Use confidential intelligence reports to notify Security when patients may be stockpiling medication.

    Verbatim wording from the response

    “Pharmacy technicians manage medication compliance. They have now been given wings to lead on so that they have full oversight of patients on their own wing. SystmOne assists with supporting the identity of patients who have missed doses. In addition, the IR process is in place if it is believed or suspected that a patient might be stockpiling. An IR is an intelligence report that will be received confidentially by the security department.”

    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. Manchester West

    AI-generated summary

    Jorge Emanuel Mousinho Assabay E Castro · 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

    Jorge Emanuel Mousinho Assabay E Castro died at home on 16 October 2014 after being found collapsed and unresponsive. He had post-traumatic epilepsy but had not received sodium valproate after 3 July 2014, despite attending his GP practice three times without the medication issue being reviewed. The principal concerns were the lack of systems to identify uncollected prescriptions and to alert GPs to medication-adherence concerns, particularly for vulnerable patients.

    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

    Lack of systems to identify and highlight outstanding prescriptions

    Wider context from the report

    “1. During the Inquest evidence was heard that: i. Jorge had not received sodium valproate medication for administration after 3rd July 2014 and he had been diagnosed with post traumatic epilepsy in February 2014 requiring regular treatment with sodium valproate as an anti-epileptic medication. ii. Jorge had been seen by General Practitioners at the Springfield Medical Centre on three occasions after the 3rd July 2014 without any review of the fact that he had not collected prescriptions for sodium valproate and the fact that the General Practitioner had received a letter from ████████ alerting the General Practitioner to an issue in relation to his regular adherence with his anti-epileptic medication. iii. Jorge was known to be a vulnerable person, who consumed excess amounts of alcohol on a regular basis and who was being treated with Citalopram for depression prior to his injuries on the 20th June 2013 and subsequently on the 18th September 2014 prior to his death. iv. The General Practitioner’s surgery at Springfield Medical Centre does not appear to have any systems to identify and highlight a patient who has not collected prescriptions, particularly in relation to vulnerable patients who will be dependent on medication for the control of a diagnosed condition and, as in the case of Jorge, to reduce the risk of episodes of seizure. In particular the computerised records do not have a system of highlighting any outstanding prescriptions at subsequent consultations so that a General Practitioner was not alerted to the fact that Jorge had not collected his prescriptions and would not have had a supply of his anti-epileptic medication after the 3rd July 2014 at any of the appointments following the 3rd July 2014. v. The evidence raised concerns that there is a risk that future deaths will occur unless action is taken to review the above issues. 2. I request you to consider the above concerns, particularly with regard to the following: i. The procedures and systems to highlight and alert General Practitioners in relation to concerns or issues raised by a Hospital Consultant, namely in Jorge’s case by ████████ with regard to Jorge’s regular adherence with his anti-epileptic medication. ii. A review of your systems and procedures to alert General Practitioners in relation to the issue of prescriptions and the failure of a patient to collect prescriptions for prescribed medications, particularly in relation to vulnerable patients who have not collected or received their prescriptions for a period of time. iii. Training of all staff, both professional and administrative, in relation to record keeping and checks in relation to outstanding prescriptions, particularly when a vulnerable patient has not collected a prescription and has not received necessary and prescribed medications for a period of time. ”

    Source location

    Jorge Emanuel Mousinho Assabay E Castro · Prevention of Future Deaths report
    Page 4 · 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

    Deliver a half-day training workshop for staff involved in repeat-prescription generation to support the revised systems and procedures.

    Verbatim wording from the response

    “3. Training of all staff in relation to prescribing As a practice we have taken this opportunity to look at our prescribing systems and the changes above do require staff training. However, we have also looked at the possibility of external facilitators who may bring further advice and expertise to the practice of effective management of repeat prescribing. We can confirm that a half-day workshop has been arranged for Thursday 25th June and we would be open to any further recommendations on this day.”

    Source location

    2015-0170-Response-by-Springfield-Medical-Centre
    Page 3 · response
    Published 29 April 2015

    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

    Notify and collaborate with local pharmacies regarding interruptions to weekly medication collection or supply, and disseminate the significant-event learning.

    Verbatim wording from the response

    “Weekly prescriptions are all sent to the patient’s nominated pharmacy. We have written to our local pharmacies and asked them to kindly inform us if there is any interruption to any of these patients’ medication collection or supply.”

    Source location

    2015-0170-Response-by-Springfield-Medical-Centre
    Page 3 · response
    Published 29 April 2015

    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

    Amend the prescribing system to highlight overdue prescriptions after three months and prompt timely clinical follow-up.

    Verbatim wording from the response

    “time period and the practice has made the necessary amendments so that in future any staff viewing a patient’s prescriptions will be alerted sooner (from 3 months) and appropriate action can be taken to mitigate any risk to the patient. This would include immediate notification to the General Practitioner who would then liaise with the patient, carers, family and pharmacy as appropriate. The practice can then work with all necessary individuals or agencies to help support the patient with compliance of their medication.”

    Source location

    2015-0170-Response-by-Springfield-Medical-Centre
    Page 3 · response
    Published 29 April 2015

    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

    Create and regularly update a register of patients receiving weekly prescriptions, with monthly administrative checks and GP review of omissions.

    Verbatim wording from the response

    “However, even this system has its limitations, as it would only highlight the issue of overdue prescriptions when a member of the practice team is actually in the patient’s records and looking at the repeat medication screen. As a practice we have over 3000 patients on regular repeat medication. Each prescription is usually for 1 to 2 months duration. However, approximately 300 of these patients, like Mr Castro, are issued medications on a weekly basis. This system is usually for patient safety or as a compliance aid. We have thus decided to create a register of all patients who are receiving prescriptions on a weekly basis. These prescriptions are issued in 4 weekly batches and the administrative staff will be checking the prescriptions have been issued for each patient every month. Those that have not been issued will be passed to a General Practitioner for review.”

    Source location

    2015-0170-Response-by-Springfield-Medical-Centre
    Page 3 · response
    Published 29 April 2015

    Open published response

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Classification: sudep19 Sep 2013 – 7 Sep 2026 (Publication date)Recurring concern: Unreliable management of medication doses not taken
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