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.

Brook Medical Centre1
Department of Health and Social Care1
Godfrey Care1
Sundon Medical Centre1
University Hospitals of North Midlands NHS Trust1

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 communication of critical medication information to GPs
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. Bedfordshire and Luton

    AI-generated summary

    Paul Robert Joseph NASH · 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

    Paul Robert Joseph NASH, who had epilepsy secondary to HSV encephalitis, was found deceased at home on 23 October 2025 after apparently suffering a seizure during the night. He had run out of Carbamazepine and missed three doses. The concerns included that the GP surgery did not appear to be told that he had completely run out of medication and did not prioritise the prescription for same-day collection, as well as wider difficulties for epilepsy patients in obtaining sufficient medication supplies.

    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 convey information about critically depleted seizure medication to the GP

    Wider context from the report

    “1. During the phone call with the Surgery on 21 October 2025, HEADWAY made it clear to the Surgery that the Deceased had run out of his Carbamazepine (seizure medication) completely and, although he had taken that morning's dose, if he did not receive more medication that day he would not have his evening dose or any other doses. Although HEADWAY was reassured that the GP would be notified that the Deceased had run out of his seizure medication, this fact did not appear to have been conveyed to the GP and the prescription was not prioritised to ensure he received it the same day. ”

    Source location

    Paul Robert Joseph NASH · 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

    Introduce a formal escalation process prioritising requests for critical medicines, including same-day clinical review and urgent clinician alerts.

    Verbatim wording from the response

    “Critical medication escalation process- the practice is introducing a formal process for identifying and escalating requests relating to critical medications including anti-epileptic medication. Where a patient reports that they have run out, or are about to run out of such medication, this will be treated as a priority medication safety issue and escalated promptly for same day review by an appropriate clinical or prescriber. Where such a task is sent to the Duty Clinician it will be flagged as urgent and an instant message will also”

    Source location

    Response from Sundon Medical Centre
    Page 2 · response
    Published 26 March 2026

    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

    Train reception and administrative staff to recognise critical medicines, manage split-strength requests, escalate concerns and verify communications.

    Verbatim wording from the response

    “Staff training on critical medications and escalation. Reception and administrative staff have received and will continue to receive further training on:”

    Source location

    Response from Sundon Medical Centre
    Page 3 · response
    Published 26 March 2026

    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

    Review implementation of the medication-safety changes and monitor compliance with urgent-medicine, dosage-wording, written-request and escalation procedures.

    Verbatim wording from the response

    “Audit and Review. The practice will undertake a review of these changes after implementation to ensure they are embedded and effective. This will include monitoring compliance with the new process for urgent critical medicines, checking the use of clear dosage wording for split-strength prescriptions and reviewing whether staff are following the written request and escalation process consistently.”

    Source location

    Response from Sundon Medical Centre
    Page 4 · response
    Published 26 March 2026

    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

    NHS England and delegated Integrated Care Boards commission and performance-manage general practice, including addressing persistent performance concerns.

    Verbatim wording from the response

    “General practice is commissioned and performance-managed by NHS England, with responsibility delegated to Integrated Care Boards, who are expected to work with practices to provide support and agree improvement plans where performance concerns arise. Where issues persist, commissioners can intervene and use contractual levers, including remedial action, to ensure safe and appropriate patient care.”

    Source location

    2026-0161 - Response from Department of Health and Social Care
    Page 1 · response
    Published 26 March 2026

    Open published response
  2. Staffordshire and Stoke-on-Trent

    AI-generated summary

    Joshua Ethan BURGESS · 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

    Joshua Ethan Burgess, who had epilepsy and Lennox-Gastaut syndrome, died at home on 19 November 2022 after vomiting and aspirating during an epileptic seizure. The report identifies concerns about communication and prescribing processes for Brivaracetam, including failures to update the prescription, medication being withheld for several days, and a subsequent increase to 10ml twice daily despite information that 4ml twice daily was appropriate.

    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 give the prescribing GP express instructions to amend Brivaracetam prescriptions after dosage changes

    Wider context from the report

    “1. The Neurology department of the Royal Stoke University Hospital operated a system whereby it did not instruct the prescribing GP to amend the prescription of Brivaracetam when changes to dosage had been agreed with Mr Burgess’ mother. The evidence from the Consultant Neurologist was that an assumption was made that when changes to medication had been discussed and agreed that Mr Burgess’ mother would attend the GP surgery to discuss the changes in medication. The same witness gave evidence that it was assumed a pharmacist within the GP surgery would read the correspondence from the neurology department and make the necessary changes to prescriptions without express instructions to do so. 2. The “workflow” within the Brook Medical Centre was such that letters sent from the Neurology department discussing changes in medication (albeit not containing a request to amend the prescription) were processed by support staff and not referred to a clinician to consider and so no changes were made to the prescription. 3. The letter of 27 July 2022 from the Neurology department to Brook Medical Centre seeking clarification as to the correct dosage of Brivaracetam was processed by support staff and a summary medications sent without referral to a clinician. 4. Godfrey Care were informed by Mr Burgess’ mother and the Neurology department of Royal Stoke University that the appropriate dose of Brivaracetam was 4ml twice daily. Medication was withheld between 22-26 July 2022 due to the information not being in writing from the prescriber, however the evidence at inquest was that 10ml twice daily was commenced on 26 July 2022 following a call to the 111 service. ”

    Source location

    Joshua Ethan BURGESS · Prevention of Future Deaths report
    Page 3 · 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

    Update weekly and monthly managers’ medication audits to verify written authorisation, dosage changes and timely receipt of replacement prescriptions.

    Verbatim wording from the response

    “• Run through the reviewed managers monthly medication audit to ensure expectations are clear.”

    Source location

    Response from Godfrey Care
    Page 1 · response
    Published 21 February 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 a local medication policy covering medication receipt, transcription, altered labels, missed doses, written prescribing confirmation and triangulation between prescribers.

    Verbatim wording from the response

    “Reviewed Policies and Procedures The following actions will be implemented by 1st April 2024.”

    Source location

    Response from Godfrey Care
    Page 2 · response
    Published 21 February 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

    Review internal policies and procedures against the coroner’s concerns and identify necessary changes.

    Verbatim wording from the response

    “Godfrey Care Response We intend to review our internal policies and procedures considering the coroners concerns and identify where changes need to be made. Below, we respond to the coroner’s areas of concern, setting out what we have already done, what we are doing now, and what we intend to do in the future.”

    Source location

    Response from Godfrey Care
    Page 1 · response
    Published 21 February 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

    Develop a standardised Medisec clinic-letter template specifying medication changes and clear prescribing actions for primary care.

    Verbatim wording from the response

    “1. The Trust’s outpatient clinic letter standards describe the structure of clinic letters based on standard headings. You will recall that ████████ (GP) gave evidence at the inquest to the effect that there were areas in the acute Trust setting which already provided discharge information which he considered to be of a ‘gold standard.’ The Trust is committed to working towards improving compliance with these standards. To support this, we are working towards creation of a standardised template in our ‘Medisec’ system (system where letters are created). This will include a section for changes to medications and clear actions for those in the primary care setting, for example, instructions for the prescribing GP to amend prescriptions.”

    Source location

    Response from University Hospitals of North Midlands
    Page 2 · response
    Published 21 February 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

    Develop a standardised clinic-letter template specifying medication changes and clear actions for prescribing GPs.

    Verbatim wording from the response

    “1. The Trust’s outpatient clinic letter standards describe the structure of clinic letters based on standard headings. You will recall that ████████ (GP) gave evidence at the inquest to the effect that there were areas in the acute Trust settings which already provided discharge information which he considered to be of a ‘gold standard.’ The Trust is committed to working towards improving compliance with these standards. To support this, we are working towards creation of a standardised template in our ‘Medisec’ system (system where letters are created). This will include a section for changes to medications and clear actions for those in the primary care setting, for example, instructions for the prescribing GP to amend prescriptions.”

    Source location

    Response from University Hospitals of North Midlands
    Page 4 · response
    Published 21 February 2024

    Open published response

Export data

Your Excel file will include all 2 matching reports.

Classification: all classifications7 Sep 2023 – 7 Sep 2026 (Publication date)Recurring concern: Unreliable communication of critical medication information to GPs
Choose the tabs to include