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.

Association Of British Neurologists1
Bournemouth, Christchurch and Poole Council1
College of Policing1
Department of Health and Social Care1
Dorset County Council1
Dorset Healthcare University NHS Foundation Trust1
Dorset Police1
Hampshire and Isle of Wight Healthcare NHS Foundation Trust1
NHS Dorset Integrated Care Board1
Royal College of Psychiatrists1
University Hospitals Dorset NHS Foundation Trust1

Most commonly raised concerns

Non-SUDEP 68 reports 19 Sep 2013 – 7 Sep 2026

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  1. Incomplete, inaccurate or unavailable clinical and care recordsClinical and care records are incomplete, inaccurate, inconsistent, unavailable or otherwise unreliable for safe care.5 reportsSelected
  2. Unsafe medication administrationA recurring failure of the medication-administration system to ensure that medicines are administered safely, accurately, promptly and as prescribed.5 reportsSelected
  3. 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.4 reportsSelected
  4. Unreliable seizure care and managementControls dedicated to recognising, assessing, monitoring, responding to and managing seizures are not reliably provided.4 reportsSelected
  5. Failure to communicate clinically important information reliably between care servicesRecurring concern that clinically important guidance, decisions and patient information are not kept accurate, current and available to the clinicians and emergency services who need them.3 reportsSelected
  6. Failure to ensure clinical investigation results are reliably available, interpreted and acted uponRecurring deficiency in the end-to-end management of clinical investigation results, including their availability, transmission, checking, review, interpretation, follow-up and escalation when needed.3 reportsSelected
  7. 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.3 reportsSelected
  8. Insufficient police training for safe recognition and response to mental-health and behaviour-related medical crisesReports identify insufficient police training to recognise and respond safely to mental-health crises and behaviour-related medical emergencies.3 reportsSelected
  9. Insufficient qualified healthcare staffing capacityHealthcare services lack enough appropriately qualified staff to provide the required clinical coverage and patient care safely for the workload, acuity and specialist needs.3 reportsSelected
  10. 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.3 reportsSelected
  11. Electronic patient records failing to make relevant clinical information available and actionableRecurring concern that electronic patient-record systems do not reliably present, preserve, share or prompt action on clinically relevant information across the patient’s care.2 reportsSelected
  12. Failure to conduct required welfare checks on people in distressThe anchor identifies a risk that care home staff will not check a resident in distress, while a different canonical report identifies failure to conduct a later welfare check on a person left in potential medical distress. Together these support a recurring concern about welfare checks not being completed when a person may require assistance.2 reportsSelected
  13. Failure to identify and address recurring safety issues through organisational learningDifferent reports identify failures of reporting, review and learning arrangements to retain, recognise and address substantive or recurring patient-safety issues, rather than merely failures to complete one specific corrective action.2 reportsSelected
  14. 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
  15. Failure to reliably recognise and respond to acute clinical deteriorationClinical deterioration is not reliably recognised, monitored, escalated and acted upon with the urgency it requires.2 reportsSelected
  16. Failure to seek medical attention when a person's condition warrants itReports identify an unreliable escalation control in which care staff or other responders do not promptly seek medical or paramedic assistance when a person's injury, pain, fall or deterioration warrants clinical attention.2 reportsSelected
  17. 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
  18. 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
  19. Inadequate recording of medication prescribing decisionsReports identify unreliable medication prescribing records that can obscure prescribing status, rationale, changes or safety-critical decisions and thereby allow unsafe medication to be prescribed or administered.2 reportsSelected
  20. 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
  21. Unreliable Care Programme Approach care coordinationReports identify different failures within the named Care Programme Approach, including the absence of a structured medication review and failures to allocate coordinators, complete required reviews, maintain care plans and follow up patients. Together these support a recurring concern with the reliable operation of CPA care coordination rather than medication review alone.2 reportsSelected
  22. Unreliable RIO clinical-record functionsThe anchor identifies an unclear timeliness standard for RIO entries, while different reports identify failures of RIO to support complete information capture, cross-team access and usable observation records. Together these support a recurring concern with the reliability of the named RIO clinical-record system rather than only one entry-timing or documentation manifestation.2 reportsSelected
  23. Unreliable communication of patient-care information between clinical staffClinical staff responsible for the same patient's care do not reliably exchange relevant information about care, treatment and risk.2 reportsSelected
  24. Unreliable escalation by care staff for required medical attentionCare staff do not reliably recognise and escalate deterioration, pain or other safety concerns to obtain timely medical assessment or advice.2 reportsSelected
  25. Unreliable healthcare patient transfer processesHealthcare transfers do not reliably provide the procedures, responsibility, documentation and clinical information needed for safe movement and continuity of care.2 reportsSelected
  26. Unreliable hospital discharge processesHospital discharge does not reliably bring together planning, clinical readiness, relevant organisations, safe execution and required follow-up.2 reportsSelected
  27. 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
  28. Unreliable medication dosage verification and communicationReports identify unsafe failures to ensure that medication dosages are accurately verified, clarified and communicated across prescribing, dispensing and administration activities.2 reportsSelected
  29. Unreliable mental health referral pathwaysReports identify different failures within the mental health referral process, including referrals not being made when indicated, received referrals not being actioned, and frontline practitioners lacking clarity about when and where to refer. These support a recurring concern with the reliability of mental health referral pathways rather than any single referral or awareness failure.2 reportsSelected
  30. Unreliable patient observation arrangementsPatient observation systems do not reliably set, support and deliver the observation level required by assessed safety risk.2 reportsSelected
  31. 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
  32. Unreliable safety CCTV monitoring systemsDifferent reports identify failures in the operation of CCTV used as a safety control, including absent staff access arrangements, inadequate coverage, non-working cameras, insufficient monitoring and unclear staff instructions. Together these support the reliability of safety CCTV monitoring as the parent concern rather than any single access, coverage, equipment or training failure.2 reportsSelected
  33. Unsafe medication prescribingReports identify unsafe prescribing decisions in which the medication, indication, dose or relevant clinical circumstances are not adequately evaluated before prescribing.2 reportsSelected

Reports matching this classification and recurring concern

19 Sep 2013 – 7 Sep 2026 · 2 reports

Classification: non-sudepRecurring concern: Unreliable RIO clinical-record functions
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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. Dorset

    AI-generated summary

    Gaia Kima Pope-Sutherland · 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

    Gaia Kima Pope-Sutherland, who had epilepsy and mental health conditions, left her aunt’s address in a psychotic state on 7 November 2017 and was later found deceased on 18 November 2017. The jury concluded that she probably died from hypothermia between 15.59 on 7 November and 10.00 on 8 November 2017. Principal concerns included under-resourcing and poor communication between epilepsy, neurology and mental health services, as well as issues concerning police training, missing-person policies and record keeping, and communication and information sharing within mental health services.

    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 flag key information on DHUFT RiO records

    Wider context from the report

    “viii. As per paragraph 1(xi) above, information could be lost on lengthy RiO records held by DHUFT if there is a significant number of records, and I therefore request that consideration is given to a guidance document dealing with how and what information should be flagged on RiO which could be provided to all staff at DHUFT. I would further request consideration is given to training staff how to record information, so it is flagged on the record. ”

    Source location

    Gaia Kima Pope-Sutherland · Prevention of Future Deaths report
    Page 7 · 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 RiO training and provide a standalone e-learning module on using the alerts system, promoting it to existing users and staff.

    Verbatim wording from the response

    “In response to this concern, the Trust will develop a guidance document on viewing, adding and removing alerts on RiO and upload this to the Trust intranet by 30th September 2022. The existing RiO e-learning and classroom-based learning courses, which are a mandatory requirement for new staff who will be using RiO as part of their role, will also be updated to orientate staff to the existence of the guidance and to demonstrate how and when to use the alerts system on RiO. This will be updated by 31st October 2022. This training will also be available as a standalone e-learning module, which will be available to all existing RiO users in the Trust. The e-learning module will be promoted to staff via email and via dissemination at the CMHT Team Leaders workshop. This will be available and disseminated by 31st October 2022.”

    Source location

    Response from NHS Dorset Healthcare University
    Page 3 · response
    Published 28 September 2022

    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 and publish RiO guidance explaining how to view, add and remove alerts.

    Verbatim wording from the response

    “In response to this concern, the Trust will develop a guidance document on viewing, adding and removing alerts on RiO and upload this to the Trust intranet by 30th September 2022. The existing RiO e-learning and classroom-based learning courses, which are a mandatory requirement for new staff who will be using RiO as part of their role, will also be updated to orientate staff to the existence of the guidance and to demonstrate how and when to use the alerts system on RiO. This will be updated by 31st October 2022. This training will also be available as a standalone e-learning module, which will be available to all existing RiO users in the Trust. The e-learning module will be promoted to staff via email and via dissemination at the CMHT Team Leaders workshop. This will be available and disseminated by 31st October 2022.”

    Source location

    Response from NHS Dorset Healthcare University
    Page 3 · response
    Published 28 September 2022

    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

    No further action is identified for RiO significant-event flags because their use already forms part of the Trust’s training programme.

    Verbatim wording from the response

    “Please note we have focused our action on the alerts system on RiO. As outlined in the evidence given to you by ████████, there is also a separate function on RiO of flagging a progress note as a significant event, so that it informs the risk assessment. We have not identified any further actions for this function, as this already forms part of our RiO training programme.”

    Source location

    Response from NHS Dorset Healthcare University
    Page 3 · response
    Published 28 September 2022

    Open published response
  2. Oxfordshire

    AI-generated summary

    Connor Sparrowhawk · 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

    Connor Sparrowhawk died on 4 July 2013 at STATT after drowning following an epileptic seizure while in the bath; the jury found that neglect contributed. The report raises concerns about whether sight or sound observations during bathing can effectively prevent drowning in patients with epilepsy, and whether RIO adequately captures and makes accessible patients’ epilepsy histories.

    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 RIO to support complete recording and accessibility of patients' epilepsy information

    Wider context from the report

    “2) The second matter of concern is in relation to RIO and the fact that there does not appear to be an appropriate prompt or place to record details about a patient's epilepsy/history. In Connor's case, this led to details of his epilepsy being placed on the care plan. Even though there have been improvements, including the introduction of the epilepsy tool kit, it is not clear whether, even now, all the required information about epilepsy can be captured on RIO and therefore, is easily accessible to staff. ”

    Source location

    Connor Sparrowhawk · Prevention of Future Deaths report
    Page 1 · 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

    Add a specific physical-health-risk prompt to the overarching RiO risk assessment form.

    Verbatim wording from the response

    “It is important that staff record risks around all physical health problems and not just epilepsy. A change request has also been made with regards to the overarching RiO risk assessment form for mental health and learning disability services. This will provide a specific prompt for physical health risks to be noted. We expect this to be available in a future OpenRiO release planned to occur in March 2016. In the meantime, there is guidance available for staff within the comprehensive Learning Disability Service Specific Guidance for RiO which advises them that physical health risks (with specific mention of epilepsy) should be noted in the ‘Other Risk Behaviours’ section of the existing form. ████████ has undertaken considerable work to promote this guidance within the division.”

    Source location

    2015-0445-Response-by-Southern-Health-NHS-Trust
    Page 2 · response
    Published 2 November 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

    Build and release electronic epilepsy assessment forms in OpenRiO for Learning Disability and other relevant Trust services.

    Verbatim wording from the response

    “You were concerned that RiO, the electronic patient record, did not have an appropriate place to record details about a person’s epilepsy. This has been considered by ████████ who is an Informatics Clinician, the OpenRiO Learning Disability Clinical Lead and a Community Learning Disability Nurse by background.”

    Source location

    2015-0445-Response-by-Southern-Health-NHS-Trust
    Page 1 · response
    Published 2 November 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

    Promote Learning Disability Service Specific Guidance for recording physical-health risks, including epilepsy, in RiO.

    Verbatim wording from the response

    “It is important that staff record risks around all physical health problems and not just epilepsy. A change request has also been made with regards to the overarching RiO risk assessment form for mental health and learning disability services. This will provide a specific prompt for physical health risks to be noted. We expect this to be available in a future OpenRiO release planned to occur in March 2016. In the meantime, there is guidance available for staff within the comprehensive Learning Disability Service Specific Guidance for RiO which advises them that physical health risks (with specific mention of epilepsy) should be noted in the ‘Other Risk Behaviours’ section of the existing form. ████████ has undertaken considerable work to promote this guidance within the division.”

    Source location

    2015-0445-Response-by-Southern-Health-NHS-Trust
    Page 2 · response
    Published 2 November 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

    Collate results from epilepsy, bathing-risk and physical-health audits to inform further improvements.

    Verbatim wording from the response

    “Compliance with policies and guidelines and with record keeping standards is assessed on an ongoing basis through management supervision and the peer review process. Audits are also regularly performed with an Epilepsy audit, bathing risk audit and physical health audit having been undertaken in the learning disability division in the last quarter. The results of these are being collated and will inform further improvements that are required.”

    Source location

    2015-0445-Response-by-Southern-Health-NHS-Trust
    Page 2 · response
    Published 2 November 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

    Communicate the OpenRiO release and explain use of the electronic epilepsy forms through Trust-wide, divisional and governance channels.

    Verbatim wording from the response

    “The release of the new version of RiO with the epilepsy forms will be accompanied by a comprehensive communication plan to ensure staff are aware of their availability. This will include the following:”

    Source location

    2015-0445-Response-by-Southern-Health-NHS-Trust
    Page 2 · response
    Published 2 November 2015

    Open published response

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Classification: non-sudep19 Sep 2013 – 7 Sep 2026 (Publication date)Recurring concern: Unreliable RIO clinical-record functions
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