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.

Coastal Homecare – Hove Branch1
Community Disability Nurse1
General Pharmaceutical Council1
Independent Futures1
Midway Pharmacy1
Southwinds1
Sussex Community 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 · 3 reports

Classification: non-sudepRecurring concern: Failure to provide required medication promptly when clinically needed
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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. West Sussex, Brighton and Hove

    AI-generated summary

    John Malcolm FISHER · 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

    John Malcolm Fisher was admitted to hospital on 22 April 2025 with persistent focal seizures that developed into status epilepticus, and he died on 4 May 2025 after the seizures could not be controlled. The report raises concerns about inaccurate or incomplete medication information during transfers between community services and the omission of sodium valproate from the care agency’s medication record, resulting in six days without that medication.

    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

    Risk of discontinued or essential seizure-control medication being incorrectly administered

    Wider context from the report

    “Overall, after hearing evidence over two days regarding the administration of Mr Fisher's AED medication, I remain concerned that patients in the community are at risk of either being given medication that has been discontinued by a GP or not being given essential medication to control seizures. ”

    Source location

    John Malcolm FISHER · 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

    Strengthen escalation pathways by referring complex medicines-reconciliation issues to senior clinicians and SCFT pharmacy support.

    Verbatim wording from the response

    “• Clear escalation pathways have been strengthened, including referral to senior clinicians and SCFT pharmacy support for complex medicines reconciliation.”

    Source location

    Response from Sussex Community NHS Foundation Trust
    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

    Provide staff with Plexus shared-care-record access for real-time GP medication summaries.

    Verbatim wording from the response

    “• Since October 2025, SCFT staff have access to shared care records via the Plexus system (which links digital care records across Sussex GP’s, hospital and community healthcare services as well as local authorities), enabling real-time access to GP medication summaries and reducing reliance on emailed or static information.”

    Source location

    Response from Sussex Community NHS Foundation Trust
    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

    Revise and implement UCR referral documentation to require receiving agencies to reconcile medicines with prescribers and pharmacies and clarify that UCR MAR charts are for SCFT staff only.

    Verbatim wording from the response

    “• UCR referral documentation is being revised to clearly reinforce current agreements that receiving care agencies must undertake their own medicines reconciliation directly with the prescriber and community pharmacy.”

    Source location

    Response from Sussex Community NHS Foundation Trust
    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

    Strengthen referral-pathway expectations that medicines reconciliation is confirmed when care responsibility transfers.

    Verbatim wording from the response

    “• SCFT has strengthened expectations within referral pathways that medicines reconciliation must be confirmed at transitions of care, particularly where responsibility for medicines administration is transferring.”

    Source location

    Response from Sussex Community NHS Foundation Trust
    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

    Update the MAR chart SOP with guidance on discontinued medicines remaining in patients’ homes and mandatory GP second checks for discrepancies.

    Verbatim wording from the response

    “• The SOP is being updated to include explicit guidance on the management of recently discontinued medications that remain physically present in the home, including a mandatory second check with the GP where discrepancies arise.”

    Source location

    Response from Sussex Community NHS Foundation Trust
    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

    Deliver staff briefings and training aligned with the revised MAR chart SOP after approval.

    Verbatim wording from the response

    “• The SOP is being updated to include explicit guidance on the management of recently discontinued medications that remain physically present in the home, including a mandatory second check with the GP where discrepancies arise.”

    Source location

    Response from Sussex Community NHS Foundation Trust
    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

    Embed pharmacy support within the UCR and General Virtual Ward model for complex or unclear medication regimes.

    Verbatim wording from the response

    “• Pharmacy support is now embedded within the UCR/General Virtual Ward model, providing timely expert advice where medication regimes are complex or unclear.”

    Source location

    Response from Sussex Community NHS Foundation Trust
    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

    Integrate GP Connect into the digital platform and current practice to verify medicines and identify recent changes.

    Verbatim wording from the response

    “• At the time Mr Fisher was receiving support from our service, GP Connect access was not available to our digital platform. Since October 2025, we have fully integrated GP Connect to our digital platform, and into current practice as an additional safeguard to support safer medication management and continuity of care. Subject to appropriate consent arrangements and patient opt-out rights, authorised staff are now able to review GP medication summaries to verify prescribed medicines and identify recent medication changes during referral, assessment, and handover processes. This has strengthened our ability to cross-check medication information and identify discrepancies at an early stage.”

    Source location

    Response from Coastal Homecare
    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

    Require all staff to complete additional Epilepsy Awareness training.

    Verbatim wording from the response

    “• All staff are now required to complete additional Epilepsy Awareness training as part of our ongoing commitment to strengthening knowledge, understanding, and safe practice across the service. Additionally, representatives of the organisation have attended the Local Authority’s Medication Adults: Epilepsy Awareness, Seizure Management and Buccal Midazolam training to further enhance our medication management procedures though continued learning.”

    Source location

    Response from Coastal Homecare
    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

    Attend Local Authority training on epilepsy awareness, seizure management, and buccal midazolam.

    Verbatim wording from the response

    “• All staff are now required to complete additional Epilepsy Awareness training as part of our ongoing commitment to strengthening knowledge, understanding, and safe practice across the service. Additionally, representatives of the organisation have attended the Local Authority’s Medication Adults: Epilepsy Awareness, Seizure Management and Buccal Midazolam training to further enhance our medication management procedures though continued learning.”

    Source location

    Response from Coastal Homecare
    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

    Require staff to cross-check medicines against prescribing records, administration records, and referral documentation during handover.

    Verbatim wording from the response

    “The following changes have now been implemented:”

    Source location

    Response from Coastal Homecare
    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

    Record each person’s dispensing pharmacy and require escalation to relevant healthcare professionals when medication discrepancies or uncertainties arise.

    Verbatim wording from the response

    “We recognise, however, that some medication changes initiated within hospital settings, Urgent Community Response services, or other secondary care pathways may not always be immediately reflected within GP Connect records. Our revised procedures therefore also require liaison with relevant healthcare professionals, including pharmacists, and specialist teams, where appropriate, to support safe and accurate medication management.”

    Source location

    Response from Coastal Homecare
    Page 3 · response
    Published 26 March 2026

    Open published response
  2. West Yorkshire Eastern

    AI-generated summary

    David Joseph Crompton · 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 Joseph Crompton, who had epilepsy, was left without his prescribed Tegretol for approximately 10 days in April 2024 and again in December 2024. His falls in both periods occurred when he was without the medication, and the inquest recorded a fall downstairs on 13 December 2024, with causes of death including hypoxic ischaemic encephalopathy, out-of-hospital cardiac arrest and cervical spine injury. The principal concerns were delays in supplying essential anti-epileptic medication, reliance on family members to seek alternative supplies, and the absence of clear systems for managing medication shortages.

    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 obtain and supply prescribed anti-epileptic medication promptly

    Wider context from the report

    “(1) It is important that when anti-epileptic medication is prescribed by a GP that this is obtained and supplied promptly by the dispensing pharmacy. It is a matter of concern that for relatively lengthy periods on two occasions Mr Crompton was left without this important medication. ”

    Source location

    David Joseph Crompton · 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

    Inspect the pharmacy’s systems for managing out-of-stock medicines and supply issues.

    Verbatim wording from the response

    “The particular pharmacy has been inspected by our Inspection Team, who looked for evidence that the pharmacy was meeting our Standards for Registered Pharmacies. The purpose of these standards is to create and maintain the right environment in pharmacies to protect and improve people’s health and wellbeing. The inspection included looking for evidence about the systems in place to manage medicines which were out of stock at the pharmacy and where there were supply issues at the wholesalers. This was to ensure practices in the pharmacy relating to stock management were appropriate.”

    Source location

    Response from General Pharmaceutical Council
    Page 2 · response
    Published 9 January 2025

    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

    The pharmacy’s staged process sought medication supplies, and referral to other pharmacies followed unsuccessful attempts to obtain the prescribed brand.

    Verbatim wording from the response

    “(2) The evidence given by family members at the inquest was that when the pharmacy was unable to supply the prescribed Tegretol medication, it was left to them to contact other pharmacies to see if they could obtain it, rather than for the pharmacy to search for supplies.”

    Source location

    Response from Midway Pharmacy
    Page 2 · response
    Published 9 January 2025

    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

    National medication shortages prevented the pharmacy from obtaining the prescribed Tegretol medication and require a national resolution.

    Verbatim wording from the response

    “The process of managing owings is staged to ensure we obtain patients’ medications in a prompt and timely manner. On this occasion, only a single supplier (AAH Pharmaceuticals) had the medication in stock, and other Midway pharmacies could not obtain supplies. There was a clinical risk of changing the brand of medication supplied due to the condition being treated, and Mr Crompton was referred to other pharmacies that may have had the medication in stock.”

    Source location

    Response from Midway Pharmacy
    Page 2 · response
    Published 9 January 2025

    Open published response
  3. Staffordshire South

    AI-generated summary

    John Keith 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

    John Keith Edwards, aged 64, was admitted to a care home for respite and subsequently suffered falls, seizures, reduced mobility, pressure sores and a rapid decline before dying in a nursing home on 19 December 2016. Concerns included inadequate care-home policies and care, failures to seek medical assistance and recognise deterioration, poor record-keeping, and inappropriate placement for his complex needs.

    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 availability and administration of prescribed medication

    Wider context from the report

    “(1) Southwinds Care home did not appear to be able to cope with Mr Edwards complex care needs. Consequently the original placement appeared to be inappropriate (2) The Care Home had an inadequate policy to deal with falls and no policy for pressure sore prevention and care (3) Care Home staff applied a seizure policy which was not specific to the resident. (4) Care Home staff failed to seek medical assistance following seizures. (5) Care Home staff failed to deal with significant bruising which developed 8 days after admission to the Care Home. (6) Care records were retrospectively filled in. (7) Staff and management failed to recognise and seek help for the residents deteriorating condition other than by way of an out of hours attendance when the GP was given minimal information and the urgent follow up request was not done. (8) Staff were unaware that medication brought in by the family was available to Mr Edwards, therefore it was not given. None was sought from the GP. (9) Non patient specific dressings were used on pressure sores. (10) A non-patient specific mattress was used on his bed. (11) Visits by the placement officer and disability nurse failed to identify Mr Edward’s deteriorating condition. ”

    Source location

    John Keith Edwards · Prevention of Future Deaths report
    Page 2 · concerns

    Open source report

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Classification: non-sudep19 Sep 2013 – 7 Sep 2026 (Publication date)Recurring concern: Failure to provide required medication promptly when clinically needed
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