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.

Department for Transport2

Most commonly raised concerns

Non-SUDEP 20 reports 7 Sep 2023 – 7 Sep 2026

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  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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 classification and recurring concern

7 Sep 2023 – 7 Sep 2026 · 2 reports

Classification: non-sudepRecurring concern: Unreliable DVLA medical fitness notification arrangements
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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. Cumbria

    AI-generated summary

    James Scott COATES · 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

    James Scott Coates died after a head-on collision while driving around a bend at approximately 90 mph on an unlit rural road, where 75% of the Cats Eye reflectors were not functioning. He sustained unsurvivable injuries and was declared dead at the roadside. The principal concern was that drivers with potentially significant conditions, including epilepsy and cannabis use, may not notify the DVLA, while legislation places the reporting responsibility on licence holders rather than doctors, which was considered insufficiently robust to ensure proper licence review.

    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 of drivers to self-report potentially significant conditions to the DVLA

    Wider context from the report

    “I previously sent you a Prevention of Future Deaths Report (in relation to the deaths of Neil Errington and Gareth and Patricia Evans) highlighting my concern that the expectation that drivers would self-report their conditions (which arises as a matter of legislation) was not being followed. The evidence in this inquest provides further cause for concern. Once again, the evidence is that a person with potentially significant conditions never notified the DVLA, and that his doctors did not draw it to the DVLA's attention because legislation places the onus on licence holders and not their doctors. I remain of the view that this is insufficiently robust to ensure that drivers with serious conditions are not having their licences properly reviewed. ”

    Source location

    James Scott COATES · 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

    Deliver educational sessions for healthcare professionals encouraging direct DVLA notifications when patients cannot or will not notify themselves.

    Verbatim wording from the response

    “I can confirm that the DVLA is engaging with healthcare professionals and has delivered a series of educational sessions to encourage clinicians to notify the DVLA directly where a patient is unable or unwilling to do so themselves. Further engagement with regulatory bodies, clinical networks and healthcare professionals will continue to better understand any concerns or issues that may be preventing notifications being made to the DVLA by doctors and driving licence holders.”

    Source location

    Response from Department for Transport
    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

    Continue engagement with regulatory bodies, clinical networks and healthcare professionals to identify barriers to DVLA notifications.

    Verbatim wording from the response

    “I can confirm that the DVLA is engaging with healthcare professionals and has delivered a series of educational sessions to encourage clinicians to notify the DVLA directly where a patient is unable or unwilling to do so themselves. Further engagement with regulatory bodies, clinical networks and healthcare professionals will continue to better understand any concerns or issues that may be preventing notifications being made to the DVLA by doctors and driving licence holders.”

    Source location

    Response from Department for Transport
    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

    Raise public awareness of the legal duty to notify the DVLA about medical conditions and the consequences of non-notification.

    Verbatim wording from the response

    “The actions being taken by my Department and the DVLA to address the issues raised in this Prevention of Future Deaths Report include reviewing the self-declaration forms for notifying the DVLA of a medical condition, raising public awareness of the legal duty to notify medical conditions to the DVLA and the consequences of not doing so and reinforcing the existing General Medical Council guidance which advises doctors when to notify the DVLA where a patient continues to drive despite being advised to notify the DVLA.”

    Source location

    Response from Department for Transport
    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

    Reinforce existing General Medical Council guidance on notifying the DVLA when patients continue driving despite advice to notify.

    Verbatim wording from the response

    “The actions being taken by my Department and the DVLA to address the issues raised in this Prevention of Future Deaths Report include reviewing the self-declaration forms for notifying the DVLA of a medical condition, raising public awareness of the legal duty to notify medical conditions to the DVLA and the consequences of not doing so and reinforcing the existing General Medical Council guidance which advises doctors when to notify the DVLA where a patient continues to drive despite being advised to notify the DVLA.”

    Source location

    Response from Department for Transport
    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

    Review and improve self-declaration forms and associated notification processes.

    Verbatim wording from the response

    “The actions being taken by my Department and the DVLA to address the issues raised in this Prevention of Future Deaths Report include reviewing the self-declaration forms for notifying the DVLA of a medical condition, raising public awareness of the legal duty to notify medical conditions to the DVLA and the consequences of not doing so and reinforcing the existing General Medical Council guidance which advises doctors when to notify the DVLA where a patient continues to drive despite being advised to notify the DVLA.”

    Source location

    Response from Department for Transport
    Page 2 · response
    Published 26 March 2026

    Open published response

  2. Lancashire and Blackburn with Darwen

    AI-generated summary

    Sheila Margaret Edwards · 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

    Sheila Margaret Edwards was a front-seat passenger in a car whose driver became unresponsive, leading to a head-on collision on 8 January 2023. The report identified concerns that drivers with dementia and other conditions may not recognise or report them to the DVLA, creating risks to other road users, and that such conditions may be under-recorded in collision data.

    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 of drivers with dementia to self-report medical conditions to the DVLA

    Wider context from the report

    “1. Dementia affects approximately half a million sufferers in the United Kingdom of which the DVLA has only been notified of approximately 30,000 drivers. It would appear that there is significant underreporting of drivers who may suffer from dementia 2. The current system for vehicle licensing relies upon the self-awareness of a driver and their ability to self-report medical conditions to the DVLA. A system that relies upon the self-awareness of a person applying for a driving licence to self-report a medical condition of dementia where the condition itself is characterised by a lack of self-awareness is inherently unsafe and exposes other road users to the risk of death or serious injury ”

    Source location

    Sheila Margaret Edwards · Prevention of Future Deaths report
    Page 2 · concerns

    Open source report

    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 report multiple medical conditions requiring DVLA monitoring

    Wider context from the report

    “5. In this case, the driver suffered from focal epilepsy, which was the primary cause of the collision resulting Sheila Edwards' death. However, the memory deficit caused by dementia resulted in a lack of awareness of an underlying neurological condition. In such cases there is a substantial risk that neither of the conditions will be reported to the DVLA for monitoring. The result is that a driver with two conditions that should be monitored by the DVLA who is both unaware of their illnesses and the need to report themselves to the DVLA. This creates a substantial risk to other road users. ”

    Source location

    Sheila Margaret Edwards · 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

    Consider research and evidence, including any additional research needed, to inform potential future changes to the driver licensing system.

    Verbatim wording from the response

    “Officials are considering the research and evidence provided and what additional research may be needed to inform potential future changes. These considerations include the system of self-declaration and the potential for the introduction of age-based testing. Consideration is also being given to policy options as part of the Government’s Road Safety Strategy, which is being developed and the details of which will be provided in due course.”

    Source location

    Response from Department for Transport
    Page 3 · response
    Published 24 April 2025

    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

    Continue working with healthcare professionals, driving organisations and regulatory bodies to identify and assess people who pose road-safety risks because of unrecognised medical conditions.

    Verbatim wording from the response

    “My Department will continue to work with healthcare professionals, driving organisations and regulatory bodies to enhance the safety of our roads and ensure that those who pose a risk to road safety due to lack of awareness of their medical condition are appropriately identified and assessed.”

    Source location

    Response from Department for Transport
    Page 4 · response
    Published 24 April 2025

    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

    Continue engaging healthcare professionals and regulatory bodies to identify and address obstacles to reporting conditions when patients lack insight or capacity.

    Verbatim wording from the response

    “Although the process for establishing that a driver meets the medical standards for driving is based on self-declaration, I recognise that this may be difficult for those drivers with conditions that may impair their insight into their health status. My department will continue to engage with healthcare professionals and their regulatory bodies to identify and address any obstacles that may hinder the reporting process, particularly where their patient lacks the insight or capacity to inform the DVLA of their condition themselves.”

    Source location

    Response from Department for Transport
    Page 2 · response
    Published 24 April 2025

    Open published response

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Classification: non-sudep7 Sep 2023 – 7 Sep 2026 (Publication date)Recurring concern: Unreliable DVLA medical fitness notification arrangements
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