Epilepsy, 19 Sep 2013 – 19 Jun 2026
Epilepsy-related Prevention of Future Deaths reports
All dates19 Sep 2013 – 7 Sep 2026
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.
Most commonly raised concerns
All classifications 90 reports 19 Sep 2013 – 7 Sep 2026
- Unreliable seizure care and managementControls dedicated to recognising, assessing, monitoring, responding to and managing seizures are not reliably provided.9 reportsSelected
- Incomplete, inaccurate or unavailable clinical and care recordsClinical and care records are incomplete, inaccurate, inconsistent, unavailable or otherwise unreliable for safe care.7 reportsSelected
- Unsafe medication administrationA recurring failure of the medication-administration system to ensure that medicines are administered safely, accurately, promptly and as prescribed.6 reportsSelected
- 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.4 reportsSelected
- 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
- 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.4 reportsSelected
- Unreliable hospital discharge processesHospital discharge does not reliably bring together planning, clinical readiness, relevant organisations, safe execution and required follow-up.4 reportsSelected
- 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
- 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
- Failure to provide timely clinical follow-up after medication prescribingPrescribed medication is not reliably followed up for effectiveness, safety, collection, adherence and patient response.3 reportsSelected
- 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.3 reportsSelected
- 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
- 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
- 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
- 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.3 reportsSelected
- 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.3 reportsSelected
- 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.3 reportsSelected
- Unreliable patient observation arrangementsPatient observation systems do not reliably set, support and deliver the observation level required by assessed safety risk.3 reportsSelected
- 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.3 reportsSelected
- 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
- Failure to communicate safety-critical care information effectively between care providers and familiesReports identify unsafe communication between care providers and families, including failures to convey risks, care instructions, concerns or other information needed to support safe care and decision-making.2 reportsSelected
- 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
- Failure to ensure safe prisoner transfersRecurring concern that the end-to-end prisoner transfer process is unreliable, leaving transferred prisoners exposed to unmanaged risks or interruptions in essential support.2 reportsSelected
- 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
- Failure to reliably document the rationale for consequential decisionsDifferent reports identify missing or inadequate records explaining the rationale and evidential basis for consequential decisions, including the anchor’s crucial decisions and comparable mental-capacity, NRPF and transfer decisions. The shared concern is unreliable rationale documentation for decisions that affect safety, accountability and continuity of care, rather than any one decision type or record system.2 reportsSelected
- 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
- 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
- Failure to reliably refer patients to required specialist servicesThe anchor identifies a required physiotherapy referral that was not completed. A different report identifies delayed referrals to physiotherapy, occupational therapy, dietetics and Parkinson’s specialist services. Together these support an end-to-end concern with required specialist referrals not being made promptly and reliably, rather than a concern limited to one physiotherapy referral.2 reportsSelected
- 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
- 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
- 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
- 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
- Incomplete clinical history-takingReports identify an unsafe clinical assessment condition in which relevant patient history is not obtained sufficiently to support recognition of symptoms, risks and appropriate care.2 reportsSelected
- 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
- 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
- Unreliable access to emergency communicationReports identify failures in dedicated emergency communication arrangements that can delay summoning or contacting emergency help.2 reportsSelected
- 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
- 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
- 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
- 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
- Unreliable management of medication doses not takenThe anchor identifies missing guidance for monitoring prescribed medication that self-administering patients do not take when dispensed. A different report identifies inconsistent procedures for responding when service users refuse or do not take medication. Together these support a recurring concern with the reliability of detecting, monitoring and escalating omitted or refused medication doses, rather than a concern limited to one guidance document or one home's procedure.2 reportsSelected
- 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
- Unreliable observation of people in custodyThe anchor report identifies failure to transfer and replicate medically required observation levels when a detained person moves into GEO AMEY custody, while a different report identifies uncertainty about whether the correct observation level, including constant watch, was provided to a person in prison custody. Together these support a recurring concern about the reliability of the custody observation process rather than only one handover or level-setting failure.2 reportsSelected
- Unreliable recording of required observations in care and custodyDifferent reports identify inaccurate, delayed, anticipatory or falsified records of required observations, including 15-minute observations in prison custody and patient-care settings. The shared unsafe condition is that observation records do not reliably reflect when and how observations were actually conducted, rather than any one observation frequency, recording location or electronic system.2 reportsSelected
- 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
- 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
- Unreliable urgent mental health referral and assessment pathwaysUrgent mental-health referral pathways do not reliably secure timely access, coordination and specialist assessment.2 reportsSelected
- Unreliable welfare-check processes for people whose health is of concernThe anchor identifies unclear purpose and use of the welfare sheet for monitoring prisoners whose health is of concern. A separate report identifies inconsistent criteria for what constitutes a welfare check and when it is recorded. Together these support a recurring concern with the reliability of the bounded welfare-check process, rather than only the sheet or recording component.2 reportsSelected
- Unsafe cell-sharing decisions for prisonersRecurring deficiencies in the prison cell-sharing risk system can leave prisoners exposed to unsafe pairings or prevent them from understanding changes affecting their cell-sharing status.2 reportsSelected
- 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 recurring concern
19 Sep 2013 – 7 Sep 2026 · 2 reports
Classification: all classificationsRecurring concern: Failure to reliably refer patients to required specialist services
ResetOnly 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.
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Concerns raised1
Failure to make timely referrals to adult neurology services
This report raised 14 other concerns. They are not shown here because they do not form part of this recurring concern.
Responses linked to these concernsEach statement is shown once, even when linked to more than one concern.
Actions described in response An action is something a respondent says it has done, is doing, or plans to do in response to the concern raised.4
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Action
Audit neurology clinic records for record-keeping compliance and conduct quarterly reviews for divisional governance assurance.
Stated by Mid and South Essex NHS Foundation Trust -
Action
Develop national neurology guidance and specifications supporting integrated care, including epilepsy services.
Stated by NHS England -
Action
Publish and disseminate a national bundle of care for children and young people with epilepsy, including transition recommendations.
Stated by NHS England
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Action
Conduct a GIRFT review visit to Mid and South Essex NHS Foundation Trust’s neurology department.
Stated by NHS England
Respondent positions A position is what a respondent says about the concern when they do not describe a specific action.2
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Position
The delay in referral was not attributable to the Trust, which disputes responsibility for the alleged failure to refer Chloe to adult neurology.
Stated by Mid and South Essex NHS Foundation Trust
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Position
After age 16, Chloe’s epilepsy was managed by the Royal London Hospital and her GP, who were responsible for transitional communication.
Stated by Mid and South Essex NHS Foundation Trust
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Concerns raised1
Failure to make timely referrals from general practice to secondary medical services for febrile seizures
This report raised 9 other concerns. They are not shown here because they do not form part of this recurring concern.
Responses linked to these concernsEach statement is shown once, even when linked to more than one concern.
Actions described in response An action is something a respondent says it has done, is doing, or plans to do in response to the concern raised.2
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Action
Replace the epilepsy guideline with updated recommendations on referral and information and support after a first seizure.
Stated by National Institute for Health and Care Excellence -
Action
Ask colleagues from seven NHS regions to share learning and available guidance with Integrated Care Boards for cascading to relevant healthcare professionals.
Stated by NHS England
Respondent positions A position is what a respondent says about the concern when they do not describe a specific action.4
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Position
NICE is responsible for producing clinical guidance on the diagnosis, treatment and management of febrile seizures.
Stated by NHS England
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Position
Existing national guidance is considered sufficient for managing febrile seizures.
Stated by NHS England -
Position
Existing national guidance and the Clinical Knowledge Summary are considered sufficient to support timely assessment, investigation and referral for febrile seizures.
Stated by National Institute for Health and Care Excellence -
Position
RCEM will not lead development of further guidance because the project would be a significant undertaking, but can contribute with other organisations.
Stated by Royal College of Emergency Medicine
