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.
No concern appears in at least two reports in this selection. Try a wider date range or another classification. Individual reports remain available below.
Showing all concerns and their linked actions and positions from reports in this date range for 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.
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.
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.
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.
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