Select SUDEP or Non-SUDEP to filter concerns and reports. Counts are PFD reports, not deaths.
About this dataset
We searched all 6,433 reports in the published corpus using a fixed text-search method, then assessed 317 candidates against source-based inclusion criteria. Ninety reports were included. Epilepsy had to be materially relevant to the death or a substantive coroner’s concern; incidental mentions were excluded.
Eligibility and SUDEP assignment were assessed with GPT-5.6 Sol and checked for valid source quotations. Assignment uses a balance-of-probabilities threshold: SUDEP or non-SUDEP must be more likely than not on the report’s evidence. The exact term SUDEP need not appear. Genuinely unclear eligible reports remain in All only. These are model-assisted documentary assessments, not independently validated clinical diagnoses.
The search can miss reports with sparse terminology or incomplete source text. This dataset does not represent all epilepsy deaths. Recurring concerns and responses are taken from the existing published evidence. Published corpus snapshot: 7 September 2026. Cohort selection updated 5 November 2026. The title shows the first and last included reports’ publication dates.
Reports over time
Matching reports published each year within the selected date range.
* 2026 is projected from reports observed to 7 Sep 2026.
Most frequent recipients
Matching reports sent to each recipient.
NHS England7
Department of Health and Social Care6
HM Prison and Probation Service3
Practice Plus Group3
Department for Transport2
Aneurin Bevan University LHB1
Barts Health NHS Trust1
Brook Medical Centre1
Care Quality Commission1
Coastal Homecare – Hove Branch1
General Medical Council1
General Pharmaceutical Council1
Gloucestershire Health and Care NHS Foundation Trust1
Godfrey Care1
Guy'S and St Thomas' NHS Foundation Trust1
High Down Prison1
James Paget University Hospitals NHS Foundation Trust1
Lewisham and Greenwich NHS Trust1
Mid and South Essex NHS Foundation Trust1
Midway Pharmacy1
Ministry of Housing, Communities and Local Government1
Ministry of Justice1
National Institute for Health and Care Excellence1
Office of the Chief Coroner1
Parc Prison and Young Offender Institute1
Parents of the deceased1
Pentonville Prison1
Royal College of General Practitioners1
Royal College of Paediatrics and Child Health1
Royal College of Physicians1
Royal College of Surgeons of England1
Sheffield Health Partnership University NHS Foundation Trust1
Sundon Medical Centre1
Sussex Community NHS Foundation Trust1
Thameside Prison1
The Children's Trust1
The Society Of British Neurological Surgeons1
University Hospitals Birmingham NHS Foundation Trust1
Showing all concerns and their linked actions and positions from reports in this date range. 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.
East Riding and Hull
Concerns raised2
Failure to provide required one-to-one nursing care
Critically stretched healthcare resources
Responses linked to these concerns
Each 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
Action
Publish a new 10 Year Workforce Plan to support appropriate NHS staffing and workforce distribution.
Stated by Department of Health and Social CareStated plannedThe respondent said that this action was planned when they made their response on 19 June 2026.
Respondent positions A position is what a respondent says about the concern when they do not describe a specific action.1
Position
Individual NHS trusts and employers are responsible for determining staffing levels and workforce composition.
Stated by Department of Health and Social CareRedirects responsibilityThe respondent said that another organisation was responsible for deciding or taking action.
Inner South London
Concerns raised9
Failure to ensure truthful observation records
Failure to maintain QEH staff awareness of the limits of prison healthcare
Failure to coordinate prison discharge through an MDT and relevant prison healthcare liaison
Failure to prescribe and administer medication at the correct dose
Failure to ensure safe and clearly understood medication-system operation
Failure to record the cell-entry escalation process in policy
Failure to maintain prison and healthcare staff awareness of the cell-entry escalation process
Failure to complete required patient observations
Unavailability of larger disabled cells adapted for constant watch
Responses linked to these concerns
Each statement is shown once, even when linked to more than one concern.
No linked response statements
No respondent-stated action or position is linked to these concerns in the published data.
Cumbria
Concerns raised2
Insufficiently robust arrangements for ensuring that drivers with serious conditions have their licences properly reviewed
Failure of drivers to self-report potentially significant conditions to the DVLA
Responses linked to these concerns
Each 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.5
Action
Deliver educational sessions for healthcare professionals encouraging direct DVLA notifications when patients cannot or will not notify themselves.
Stated by MP, Minister for Local TransportStated completedThe respondent said that this action was complete when they made their response on 26 March 2026.
Action
Continue engagement with regulatory bodies, clinical networks and healthcare professionals to identify barriers to DVLA notifications.
Stated by MP, Minister for Local TransportStated in progressThe respondent said that this action was in progress when they made their response on 26 March 2026.
Action
Raise public awareness of the legal duty to notify the DVLA about medical conditions and the consequences of non-notification.
Stated by MP, Minister for Local TransportStated in progressThe respondent said that this action was in progress when they made their response on 26 March 2026.
Action
Reinforce existing General Medical Council guidance on notifying the DVLA when patients continue driving despite advice to notify.
Stated by MP, Minister for Local TransportStated in progressThe respondent said that this action was in progress when they made their response on 26 March 2026.
Action
Review and improve self-declaration forms and associated notification processes.
Stated by MP, Minister for Local TransportStated in progressThe respondent said that this action was in progress when they made their response on 26 March 2026.
Bedfordshire and Luton
Concerns raised3
Failure to convey information about critically depleted seizure medication to the GP
Failure to prioritise prescriptions for same-day supply of critically depleted seizure medication
Difficulties obtaining sufficient quantities of epilepsy medication for continuous access
Responses linked to these concerns
Each 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.8
Action
Introduce a formal escalation process prioritising requests for critical medicines, including same-day clinical review and urgent clinician alerts.
Stated by Sundon Medical CentreStated in progressThe respondent said that this action was in progress when they made their response on 26 March 2026.
Action
Train reception and administrative staff to recognise critical medicines, manage split-strength requests, escalate concerns and verify communications.
Stated by Sundon Medical CentreStated in progressThe respondent said that this action was in progress when they made their response on 26 March 2026.
Action
Review implementation of the medication-safety changes and monitor compliance with urgent-medicine, dosage-wording, written-request and escalation procedures.
Stated by Sundon Medical CentreStated plannedThe respondent said that this action was planned when they made their response on 26 March 2026.
Action
Clearly communicate the urgent status of critical-medication prescriptions to pharmacies to support prompt dispensing.
Stated by Sundon Medical CentreStated plannedThe respondent said that this action was planned when they made their response on 26 March 2026.
Action
Consider repeat dispensing, batch prescribing, or one-off reserve prescriptions for suitable patients at risk of running out of critical medication.
Stated by Sundon Medical CentreStated plannedThe respondent said that this action was planned when they made their response on 26 March 2026.
Action
Work with the pharmacy sector to improve awareness of emergency supply provisions and patients’ access to emergency medicines.
Stated by Department of Health and Social CareStated in progressThe respondent said that this action was in progress when they made their response on 26 March 2026.
Action
Inform epilepsy patients about the Charlie Card emergency-supply self-advocacy tool.
Stated by Sundon Medical CentreStatus unclearThe respondent did not make the status of this action clear when they made their response on 26 March 2026.
Action
Provide clear patient information about prescription processing and pharmacy dispensing times through the website and reception.
Stated by Sundon Medical CentreStated plannedThe respondent said that this action was planned when they made their response on 26 March 2026.
Respondent positions A position is what a respondent says about the concern when they do not describe a specific action.3
Position
NHS England and delegated Integrated Care Boards commission and performance-manage general practice, including addressing persistent performance concerns.
Stated by Department of Health and Social CareRedirects responsibilityThe respondent said that another organisation was responsible for deciding or taking action.
Position
Existing urgent-supply arrangements, including pharmacist emergency supplies and NHS 111 referrals, provide routes to obtain urgently needed medicines.
Stated by Department of Health and Social CareExisting arrangements considered sufficientThe respondent said that existing arrangements were sufficient, so no further action was needed.
Position
Existing regulations and NHS pharmacy terms require community pharmacies to dispense NHS medicines with reasonable promptness and notify patients of delays.
Stated by Department of Health and Social CareExisting arrangements considered sufficientThe respondent said that existing arrangements were sufficient, so no further action was needed.
West Sussex, Brighton and Hove
Concerns raised8
Insufficient medication verification during care-needs assessment
Failure to prevent administration of GP-discontinued medication
Failure to follow up medication incidents for learning affecting vulnerable patients
Failure to provide complete current medication and stop-date information during care handover
Failure to transfer all prescribed medication into the electronic MAR and cross-check it at agency handover
Inaccurate or incomplete recording of medication administration
Failure to liaise with the community pharmacy about regularly dispensed medication
Risk of discontinued or essential seizure-control medication being incorrectly administered
Responses linked to these concerns
Each 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.15
Action
Strengthen escalation pathways by referring complex medicines-reconciliation issues to senior clinicians and SCFT pharmacy support.
Stated by Sussex Community NHS Foundation TrustStated completedThe respondent said that this action was complete when they made their response on 26 March 2026.
Action
Provide staff with Plexus shared-care-record access for real-time GP medication summaries.
Stated by Sussex Community NHS Foundation TrustStated completedThe respondent said that this action was complete when they made their response on 26 March 2026.
Action
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.
Stated by Sussex Community NHS Foundation TrustStated plannedThe respondent said that this action was planned when they made their response on 26 March 2026.
Action
Strengthen referral-pathway expectations that medicines reconciliation is confirmed when care responsibility transfers.
Stated by Sussex Community NHS Foundation TrustStated completedThe respondent said that this action was complete when they made their response on 26 March 2026.
Action
Embed pharmacy support within the UCR and General Virtual Ward model for complex or unclear medication regimes.
Stated by Sussex Community NHS Foundation TrustStated completedThe respondent said that this action was complete when they made their response on 26 March 2026.
Action
Integrate GP Connect into the digital platform and current practice to verify medicines and identify recent changes.
Stated by Coastal Homecare (Hove) Ltd.Stated completedThe respondent said that this action was complete when they made their response on 26 March 2026.
Action
Require staff to cross-check medicines against prescribing records, administration records, and referral documentation during handover.
Stated by Coastal Homecare (Hove) Ltd.Stated completedThe respondent said that this action was complete when they made their response on 26 March 2026.
Action
Photograph all medicines present at assessment and onboarding for every new care package.
Stated by Coastal Homecare (Hove) Ltd.Stated completedThe respondent said that this action was complete when they made their response on 26 March 2026.
Action
Update the MAR chart SOP with guidance on discontinued medicines remaining in patients’ homes and mandatory GP second checks for discrepancies.
Stated by Sussex Community NHS Foundation TrustStated in progressThe respondent said that this action was in progress when they made their response on 26 March 2026.
Action
Complete a formal review of the MAR chart SOP for UCR and Home First services.
Stated by Sussex Community NHS Foundation TrustStated completedThe respondent said that this action was complete when they made their response on 26 March 2026.
Action
Deliver staff briefings and training aligned with the revised MAR chart SOP after approval.
Stated by Sussex Community NHS Foundation TrustStated plannedThe respondent said that this action was planned when they made their response on 26 March 2026.
Action
Conduct a themed review of UCR medication incidents involving MAR charts and report findings through Trust governance structures.
Stated by Sussex Community NHS Foundation TrustStated in progressThe respondent said that this action was in progress when they made their response on 26 March 2026.
Action
Record each person’s dispensing pharmacy and require escalation to relevant healthcare professionals when medication discrepancies or uncertainties arise.
Stated by Coastal Homecare (Hove) Ltd.Stated completedThe respondent said that this action was complete when they made their response on 26 March 2026.
Action
Require all staff to complete additional Epilepsy Awareness training.
Stated by Coastal Homecare (Hove) Ltd.Stated in progressThe respondent said that this action was in progress when they made their response on 26 March 2026.
Action
Attend Local Authority training on epilepsy awareness, seizure management, and buccal midazolam.
Stated by Coastal Homecare (Hove) Ltd.Stated completedThe respondent said that this action was complete when they made their response on 26 March 2026.
Respondent positions A position is what a respondent says about the concern when they do not describe a specific action.1
Position
Receiving care agencies are responsible for medicines reconciliation with prescribers and pharmacies; SCFT MAR charts are not definitive records for external providers.
Stated by Sussex Community NHS Foundation TrustRedirects responsibilityThe respondent said that another organisation was responsible for deciding or taking action.
South Wales Central
Concerns raised3
Failure to maintain the gate house at a security level that restricts entry of illicit materials
Failure to maintain prison-block windows at a security level that restricts entry of illicit materials
Delays and non-occurrence of scheduled morning welfare checks due to lack of staff
Responses linked to these concerns
Each 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
Action
Plan expansion works for a new Gate House and refurbishment of the existing Gate House to accommodate Enhanced Gate Security.
Stated by Clyde & Co Claims LLPStated in progressThe respondent said that this action was in progress when they made their response on 4 February 2026.
Action
Use specialist screening equipment routinely to screen staff, professional visitors and social visitors entering the prison.
Stated by Clyde & Co Claims LLPStated completedThe respondent said that this action was complete when they made their response on 4 February 2026.
Action
Fund and deploy additional external dog patrols to reduce contraband throwovers and support searching.
Stated by Clyde & Co Claims LLPStated completedThe respondent said that this action was complete when they made their response on 4 February 2026.
Action
Develop a business case seeking funding for staffing and additional dogs to support searching seven days a week during core hours.
Stated by Clyde & Co Claims LLPStated in progressThe respondent said that this action was in progress when they made their response on 4 February 2026.
Action
Expand the Special Searching Team to increase the frequency and quality of staff and visitor searches.
Stated by Clyde & Co Claims LLPStated completedThe respondent said that this action was complete when they made their response on 4 February 2026.
Action
Deliver the phased replacement of vulnerable prison windows to reduce contraband ingress.
Stated by Clyde & Co Claims LLPStated in progressThe respondent said that this action was in progress when they made their response on 4 February 2026.
Action
Issue updated welfare-check procedures requiring physical checks during morning unlock.
Stated by Clyde & Co Claims LLPStated completedThe respondent said that this action was complete when they made their response on 4 February 2026.
Action
Operate enhanced daily compliance checks using CCTV review, rotational unit sampling, issue escalation and management follow-up.
Stated by Clyde & Co Claims LLPStated completedThe respondent said that this action was complete when they made their response on 4 February 2026.
Action
Update initial and refresher training to instruct officers on positive-response welfare checks during unlock.
Stated by Clyde & Co Claims LLPStated completedThe respondent said that this action was complete when they made their response on 4 February 2026.
Action
Review welfare-check compliance and trends through monthly multidisciplinary Safety Meetings.
Stated by Clyde & Co Claims LLPStated completedThe respondent said that this action was complete when they made their response on 4 February 2026.
Action
Reissue written instructions and reminders on correct unlock procedures and welfare checks, including communication through safety meetings.
Stated by Clyde & Co Claims LLPStated completedThe respondent said that this action was complete when they made their response on 4 February 2026.
Action
Amend residential wing ledgers to require daily recorded welfare checks, including weekends.
Stated by Clyde & Co Claims LLPStated completedThe respondent said that this action was complete when they made their response on 4 February 2026.
Respondent positions A position is what a respondent says about the concern when they do not describe a specific action.4
Position
A temporary gatehouse extension was not pursued because existing interim searching measures were considered a better use of finances, though less comprehensive.
Stated by Clyde & Co Claims LLPExisting arrangements considered sufficientThe respondent said that existing arrangements were sufficient, so no further action was needed.
Position
HMPPS must approve and fund building-design changes, while G4S is contracted only to manage and maintain the existing facility.
Stated by Clyde & Co Claims LLPRedirects responsibilityThe respondent said that another organisation was responsible for deciding or taking action.
Position
Window replacement cannot be completed widescale or faster because approved suppliers, specialist contractors, prisoner relocation and security logistics constrain delivery.
Stated by Clyde & Co Claims LLPUnable to actThe respondent said that a constraint prevented them from taking the relevant action.
Position
Welfare checks could safely be conducted by one officer, and there was no requirement for officers to conduct them in pairs.
Stated by Clyde & Co Claims LLPDisputes the concernThe respondent disagreed with part of the concern or the basis for it.
Sefton, St Helens and Knowsley
Concerns raised2
Lack of national pathway guidance for call handlers on assessing whether someone is breathing and whether CPR is required
Lack of national pathway guidance for call handlers on assessing how cold the body is
Responses linked to these concerns
Each 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
Action
Provide CPR Toolkit Training to NHS Pathways health advisors, including the ‘No, No, Go’ approach and telephone-guided CPR initiation.
Stated by NHS EnglandStated completedThe respondent said that this action was complete when they made their response on 9 January 2026.
Surrey
Concerns raised5
Use of drones to deliver drugs and other contraband into prison
Easy availability of new psychoactive substances in prison
Easy availability of mobile phones in prison
Failure to hold statistics on drug-related deaths in prisons
Failure to protect vulnerable prisoners from forced testing of illegal drugs
Responses linked to these concerns
Each 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.8
Action
Deliver staff upskilling to improve responses to drone activity affecting prisons.
Stated by HM Prison and Probation ServiceStated in progressThe respondent said that this action was in progress when they made their response on 8 December 2025.
Action
Conduct vulnerability assessments across the prison estate to understand drone risks and inform mitigation plans.
Stated by HM Prison and Probation ServiceStated in progressThe respondent said that this action was in progress when they made their response on 8 December 2025.
Action
Invest over £40 million in physical security across 34 prisons, including anti-drone measures at more than 15 priority prisons.
Stated by HM Prison and Probation ServiceStated in progressThe respondent said that this action was in progress when they made their response on 8 December 2025.
Action
Develop comprehensive guidance for responding to drone activity affecting prisons.
Stated by HM Prison and Probation ServiceStated completedThe respondent said that this action was complete when they made their response on 8 December 2025.
Action
Provide trace-detection equipment to all public sector prisons to identify drugs on physical items.
Stated by HM Prison and Probation ServiceStated completedThe respondent said that this action was complete when they made their response on 8 December 2025.
Action
Operate X-ray body scanners in all adult male closed prisons to detect and deter internally concealed illicit items.
Stated by HM Prison and Probation ServiceStated completedThe respondent said that this action was complete when they made their response on 8 December 2025.
Action
Equip 54 priority establishments with enhanced gate security, including metal detectors and X-ray baggage scanners, to screen staff and visitors.
Stated by HM Prison and Probation ServiceStated completedThe respondent said that this action was complete when they made their response on 8 December 2025.
Action
Examine all drug-related deaths through the early learning review process and use findings and recommendations to address safety concerns.
Stated by HM Prison and Probation ServiceStated completedThe respondent said that this action was complete when they made their response on 8 December 2025.
Respondent positions A position is what a respondent says about the concern when they do not describe a specific action.2
Position
More definitive drug-related deaths statistics cannot currently cover later years because incomplete coroner data would reduce result quality.
Stated by HM Prison and Probation ServiceUnable to actThe respondent said that a constraint prevented them from taking the relevant action.
Position
HMPPS cannot publish a specific drug-related deaths category because such cases cannot be identified accurately within required publication timescales.
Stated by HM Prison and Probation ServiceUnable to actThe respondent said that a constraint prevented them from taking the relevant action.
Dorset
Concerns raised2
Failure to consistently discuss SUDEP with patients with epilepsy
Lack of SUDEP training for doctors
Responses linked to these concerns
Each 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.1
Position
Medical schools, royal colleges and the GMC determine and oversee medical education curricula and standards, rather than the department.
Stated by Department of Health and Social CareRedirects responsibilityThe respondent said that another organisation was responsible for deciding or taking action.
Gwent
Concerns raised1
Delays in releasing ambulances from emergency departments
Responses linked to these concerns
Each 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
Action
Appoint a dedicated Associate Director of Clinical Operations to strengthen senior clinical leadership for patient flow and handover-delay escalation.
Stated by Aneurin Bevan University LHBStated completedThe respondent said that this action was complete when they made their response on 25 July 2025.
Action
Continue the focused Handover 45 initiative to reduce ambulance handover delays and sustain performance improvements.
Stated by Aneurin Bevan University LHBStated in progressThe respondent said that this action was in progress when they made their response on 25 July 2025.
Action
Embed the national optimal hospital flow framework, including standardized board rounds, across acute and community hospitals in Gwent.
Stated by Aneurin Bevan University LHBStatus unclearThe respondent did not make the status of this action clear when they made their response on 25 July 2025.
Action
Review the Emergency Pressures Escalation Policy against NHS Wales urgent and emergency care escalation guidance.
Stated by Aneurin Bevan University LHBStated completedThe respondent said that this action was complete when they made their response on 25 July 2025.
Action
Maximize capacity of the dedicated Transfer and Discharge Lounge at Grange University Hospital.
Stated by Aneurin Bevan University LHBStatus unclearThe respondent did not make the status of this action clear when they made their response on 25 July 2025.
Action
Use weekly scrutiny panels and improved system escalation to focus on longest-staying patients.
Stated by Aneurin Bevan University LHBStatus unclearThe respondent did not make the status of this action clear when they made their response on 25 July 2025.
Action
Appoint six additional whole-time-equivalent Emergency Department consultants to increase assessment and treatment capacity.
Stated by Aneurin Bevan University LHBStated in progressThe respondent said that this action was in progress when they made their response on 25 July 2025.
Action
Develop a criteria-led discharge approach using agreed clinical criteria for timely and safe discharge.
Stated by Aneurin Bevan University LHBStatus unclearThe respondent did not make the status of this action clear when they made their response on 25 July 2025.
Action
Review the internal Immediate Release Protocol for compliance with WAST’s revised purple 999 response.
Stated by Aneurin Bevan University LHBStated in progressThe respondent said that this action was in progress when they made their response on 25 July 2025.
Action
Refresh weekly whole-system flow oversight with senior executive chairing and action plans for emergency care and ambulance handover delays.
Stated by Aneurin Bevan University LHBStated completedThe respondent said that this action was complete when they made their response on 25 July 2025.
Action
Operate the larger transfer lounge opened at Grange University Hospital to support earlier transfer of patients from the Emergency Department.
Stated by Aneurin Bevan University LHBStated completedThe respondent said that this action was complete when they made their response on 25 July 2025.
Action
Develop a digital platform showing patient status at each pathway stage to improve patient flow.
Stated by Aneurin Bevan University LHBStatus unclearThe respondent did not make the status of this action clear when they made their response on 25 July 2025.
Respondent positions A position is what a respondent says about the concern when they do not describe a specific action.1
Position
WAST was responsible for contacting the Health Board through approved routes to request release of a delayed ambulance vehicle.
Stated by Aneurin Bevan University LHBRedirects responsibilityThe respondent said that another organisation was responsible for deciding or taking action.
