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
Non-SUDEP 68 reports 19 Sep 2013 – 7 Sep 2026
Reset- Incomplete, inaccurate or unavailable clinical and care recordsClinical and care records are incomplete, inaccurate, inconsistent, unavailable or otherwise unreliable for safe care.5 reportsSelected
- Unsafe medication administrationA recurring failure of the medication-administration system to ensure that medicines are administered safely, accurately, promptly and as prescribed.5 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
- Unreliable seizure care and managementControls dedicated to recognising, assessing, monitoring, responding to and managing seizures are not reliably provided.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 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
- 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
- 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
- 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 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 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 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 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
- 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
- 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
- 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 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
- 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 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
- Unreliable hospital discharge processesHospital discharge does not reliably bring together planning, clinical readiness, relevant organisations, safe execution and required follow-up.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 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 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
- Unreliable patient observation arrangementsPatient observation systems do not reliably set, support and deliver the observation level required by assessed safety risk.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
- 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
19 Sep 2013 – 7 Sep 2026 · 68 reports
ResetShowing all concerns and their linked actions and positions from reports in this date range for non-sudep. Select a recurring concern above to narrow the evidence.
Actions and positions describe what recipients stated in published responses. Select a statement to read its source wording.
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Concerns raised4
Failure of relevant authorities to identify high voltage power lines over event sites
Lack of nationally replicated site visits for large events
Failure to identify high voltage power lines over event sites
Failure to minimise risks from high voltage power lines over event sites
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.3
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Action
Raise awareness of the incident with industry stakeholders and underline the importance of following event safety guidance.
Stated by Health and Safety Executive -
Action
Publish web-based event safety guidance addressing risks from overhead high-voltage power lines.
Stated by Health and Safety Executive -
Action
Appoint Ground Control to undertake all safety and event management activity for Kendal Calling.
Stated by Kendal Calling
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
Local authorities are responsible for enforcing health and safety law at individual events within their geographical areas.
Stated by Health and Safety Executive
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Position
Current available guidance is considered sufficient to enable event organisers and relevant bodies to identify risks from overhead power lines.
Stated by Health and Safety Executive -
Position
Responsibility for health and safety risks at work rests with the Health and Safety Executive.
Stated by Department for Business, Energy & Industrial Strategy -
Position
Health and safety risks from high-voltage electrical installations fall outside the department’s product-safety remit.
Stated by Department for Business, Energy & Industrial Strategy
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Concerns raised11
Failure to train and guide reception staff in CCTV monitoring
Inadequate CCTV screen visibility for pool activity
Unavailability of continuous monitoring for swimmers with epilepsy
Failure to maintain CCTV cameras and provide alternative surveillance when one is non-operational
Failure to share and act on learning from comparable pool deaths
Unavailability of a defibrillator at poolside
Failure to prevent first aid certificate lapses through a failsafe renewal system
Lack of clear arrangements for additional help for swimmers with epilepsy
Absence of a building-wide audible emergency alarm
Lack of clear guidance and staff understanding of medical conditions relevant to exercise
Absence of immediate poolside telephone access for summoning medical assistance
Responses linked to these concernsEach statement is shown once, even when linked to more than one concern.
No linked response statementsNo respondent-stated action or position is linked to these concerns in the published data.
-
Concerns raised1
Failure by patients and care organisations to heed safety guidance on fire hazards from paraffin-based skin products
Responses linked to these concernsEach statement is shown once, even when linked to more than one concern.
No linked response statementsNo respondent-stated action or position is linked to these concerns in the published data.
-
Concerns raised2
Failure of participant waivers to mention the dangers of sea swimming for participants with epilepsy
Failure of participant waivers to request participants' past medical history
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
Engage Gaviota to request adding epilepsy as a relevant medical condition to the Sunrise excursion waiver.
Stated by Thomas Cook Tour Operations Limited -
Action
Review whether to request further waiver amendments covering medical history that may make sea excursions dangerous.
Stated by Thomas Cook Tour Operations Limited
-
Concerns raised13
Inadequate falls management policy
Failure to ensure availability and administration of prescribed medication
Failure of placement and disability nursing visits to identify deterioration
Failure to seek medical assistance following seizures
Use of a non-patient-specific mattress
Failure to recognise residents’ deteriorating condition
Failure to deal with significant bruising
Failure to seek and communicate appropriate medical follow-up for deteriorating residents
Use of a seizure policy not specific to the resident
Use of non-patient-specific dressings for pressure sores
Lack of a pressure sore prevention and care policy
Failure to provide a care placement able to cope with complex care needs
Retrospective completion of care records
Responses linked to these concernsEach statement is shown once, even when linked to more than one concern.
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
The mattress provided was not shown to be incorrect or improperly used.
Stated by Southwinds Limited
-
Position
Medical advice was sought appropriately, and no urgent referral was recommended or documented by the out-of-hours doctor.
Stated by Southwinds Limited -
Position
The absence of a resident-specific seizure policy did not indicate inadequate care because no seizure history was disclosed and general epilepsy procedures were followed.
Stated by Southwinds Limited -
Position
The dressing applied for comfort was not shown to be incorrect.
Stated by Southwinds Limited
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Concerns raised5
Failure to reliably identify matters requiring investigation
Lack of defined and consistently applied criteria for identifying and acting on learning opportunities
Lack of clarity about senior paediatric assessment requirements before discharge
Failure to reliably select appropriate staff for investigations
Failure to ensure timely learning and action from investigations
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.1
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Action
Alter parent discharge information to state explicitly that parents may request escalation for a consultant review.
Stated by Betsi Cadwaladr University LHB
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Concerns raised4
Delays in conducting a home welfare visit after unexplained non-attendance
Lack of comparable non-attendance welfare response systems in other schools
Failure to immediately contact police when no one answers at the family home
Lack of multiple adult contact numbers for each child
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.3
-
Action
Examine how to update attendance and safeguarding guidance to clarify links between attendance management and welfare considerations.
Stated by Department for Education -
Action
Identify how to reinforce guidance on escalating child safety or welfare concerns to children’s social care services or police.
Stated by Department for Education -
Action
Examine how to update safeguarding and attendance guidance to recommend that schools hold more than one contact number.
Stated by Department for Education
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Concerns raised7
Failure to undertake annual liver function tests
Failure to review CAF documentation
Lack of clarity about referral routes and acceptance by Psychological services
Delays in reporting EEGs
Delays in allocation of cases within Early Help Services
Lack of understanding of cases suitable for CAMHS referral
Lack of GP involvement in inter-agency case handling
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.12
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Action
Implement annual liver-function monitoring for patients prescribed sodium valproate, with due-date alerts, prescription checks and escalation of missed tests.
Stated by Grosvenor Medical Centre -
Action
Search current sodium-valproate patients’ records and invite those overdue for liver-function testing to attend for blood tests.
Stated by Grosvenor Medical Centre -
Action
Route incoming CAF documents to the duty doctor for same-day action assessment, then scan and circulate them to regular GPs when no same-day response is required.
Stated by Grosvenor Medical Centre
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Action
Make written CAMHS referrals whenever paediatricians have reasonable cause for concern, without filtering referrals or predicting acceptance.
Stated by the Trust -
Action
Manage Healthy Young Minds referrals through a single point of entry and allocate them according to children’s needs.
Stated by Pennine Care NHS Foundation Trust -
Action
Expand the service offer document to name a contact for paediatric colleagues seeking advice and consultation.
Stated by Pennine Care NHS Foundation Trust -
Action
Produce and widely disseminate a Healthy Young Minds service offer document explaining referrals, advice access and appropriate referral problems.
Stated by Pennine Care NHS Foundation Trust -
Action
Review Early Help caseloads and work allocation to identify and reduce allocation delays.
Stated by Tameside Borough Council -
Action
Monitor Early Help allocations through a weekly Family Support Panel to support timely responses to children’s needs.
Stated by Tameside Borough Council -
Action
Allocate waiting-list families a worker within one month and have managers monitor families during the waiting period.
Stated by Tameside Borough Council -
Action
Submit six-monthly Early Help performance reports to the Safeguarding Children Board.
Stated by Tameside Borough Council -
Action
Apply epilepsy mental-health safeguards through tailored care plans, specialist nurse review and liaison, CAMHS referral, and immediate admission for high-risk self-harm or suicide concerns.
Stated by the Trust
Respondent positions A position is what a respondent says about the concern when they do not describe a specific action.3
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Position
Responsibility for action on delayed EEG reporting should be directed to the organisation controlling specialist EEG reporting and results delivery.
Stated by the Trust
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Position
The Trust cannot control reporting times or delivery of specialist EEG results performed exclusively by another NHS Trust.
Stated by the Trust -
Position
The Trust disputes that medical professionals lacked understanding of CAMHS referrals, stating evidence showed the process was understood.
Stated by the Trust
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Concerns raised6
Failure to prescribe the appropriate antibiotics for specific clinical situations
Failure to provide GP clinical assessment for patients with deteriorating conditions and complex needs
Failure to maintain accurate records of patient contacts and clinical decisions
Failure of the home visit policy to address complex chronic conditions in care or residential facilities
Failure to distinguish clinical assessment tasks from true administration tasks
Failure to clearly request and document home visits
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
Ask the Birmingham and Area Antimicrobial Group to consider including aspiration pneumonia in local primary-care antimicrobial guidelines.
Stated by NHS Solihull Clinical Commissioning Group -
Action
Issue advice to practices on record keeping.
Stated by NHS Solihull Clinical Commissioning Group -
Action
Issue a learning alert to all Solihull member practices covering home-visit requests, policies, care-home requests and administrative-task classifications.
Stated by NHS Solihull Clinical Commissioning Group
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Action
Ask the Local Medical Committee to discuss consideration of a Solihull-wide home-visiting policy with its members.
Stated by NHS Solihull Clinical Commissioning Group
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Concerns raised3
Failure to involve next of kin in significant decisions for a patient with declining cognitive function
Failure to record the rationale and patient consent for a change of GP
Failure to record consideration and outcome of the patient's capacity
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.7
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Action
Create a written, party-approved policy for future locality projects defining GP registration changes and responsibility for informing next of kin.
Stated by Northfield Medical Centre -
Action
Require care homes to confirm patients’ awareness, consent and appropriate next-of-kin notification when capable residents change GP practice.
Stated by Northfield Medical Centre -
Action
Require care homes to confirm next-of-kin notification and consent when residents lacking capacity change GP practice, with capacity concerns escalated.
Stated by Northfield Medical Centre
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Action
Require robust project plans covering stakeholder, family and next-of-kin engagement, responsibilities, and communication of planned changes to care-home and GP-practice staff.
Stated by NHS Leicester, Leicestershire and Rutland Integrated Care Board -
Action
Contact care homes to recommend policies and documentation standards for staff signing on behalf of residents who can consent but cannot physically sign.
Stated by NHS Leicester, Leicestershire and Rutland Integrated Care Board -
Action
Issue standard practice application forms to membership practices, including a section for signing on behalf of another person.
Stated by NHS Leicester, Leicestershire and Rutland Integrated Care Board -
Action
Require providers to document discussions and information received from residents, record potential changes in care plans and clinical systems, and update records promptly.
Stated by NHS Leicester, Leicestershire and Rutland Integrated Care Board
Respondent positions A position is what a respondent says about the concern when they do not describe a specific action.6
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Position
Care homes are responsible for confirming patient awareness, consent and, where appropriate, next-of-kin notification when facilitating GP practice changes.
Stated by Northfield Medical Centre
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Position
The GP practice cannot directly inform next of kin because of patient confidentiality and practical difficulties identifying relevant family members.
Stated by Northfield Medical Centre -
Position
The medical records showed no cognitive decline requiring a formal capacity assessment, so capacity was assumed for the GP change process.
Stated by Hazelmere Medical Centre -
Position
Patients with capacity are not required to have next of kin informed about a change of GP practice.
Stated by NHS Leicester, Leicestershire and Rutland Integrated Care Board -
Position
There is usually no need to record the rationale for changing a patient's registered GP in the medical record.
Stated by Hazelmere Medical Centre -
Position
Capacity assessments are not routinely undertaken unless there is a medical need.
Stated by Hazelmere Medical Centre
