Epilepsy, 19 Sep 2013 – 19 Jun 2026

Epilepsy-related Prevention of Future Deaths reports

Last 3 years7 Sep 2023 – 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.

28All reports 8SUDEP 20Non-SUDEP

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.

Brook Medical Centre1
Godfrey Care1
Sheffield Health Partnership University NHS Foundation Trust1
University Hospitals of North Midlands NHS Trust1

Most commonly raised concerns

All classifications 28 reports 7 Sep 2023 – 7 Sep 2026

  1. Unreliable seizure care and managementControls dedicated to recognising, assessing, monitoring, responding to and managing seizures are not reliably provided.3 reportsSelected
  2. 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.2 reportsSelected
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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.2 reportsSelected
  8. Incomplete, inaccurate or unavailable clinical and care recordsClinical and care records are incomplete, inaccurate, inconsistent, unavailable or otherwise unreliable for safe care.2 reportsSelected
  9. 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.2 reportsSelected
  10. 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
  11. Unreliable hospital discharge processesHospital discharge does not reliably bring together planning, clinical readiness, relevant organisations, safe execution and required follow-up.2 reportsSelected
  12. 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
  13. 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
  14. Unreliable patient observation arrangementsPatient observation systems do not reliably set, support and deliver the observation level required by assessed safety risk.2 reportsSelected
  15. 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
  16. 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.2 reportsSelected
  17. Unsafe medication administrationA recurring failure of the medication-administration system to ensure that medicines are administered safely, accurately, promptly and as prescribed.2 reportsSelected

Reports matching this recurring concern

7 Sep 2023 – 7 Sep 2026 · 2 reports

Classification: all classificationsRecurring concern: Unreliable review and action on clinically significant incoming correspondence
Reset

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. South Yorkshire (Western)

    AI-generated summary

    Bryan Andrews and Mary Andrews · 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

    Bryan and Mary Andrews died at their home on 27 November 2022 from multiple stab wounds inflicted by their adult son. The principal concern was a lack of communication between services about the relationship between his epilepsy and psychotic symptoms, resulting in treatment delays, rejected referrals and failures to share important information.

    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 of referral communication channels to provide reliable access and confirmation

    Wider context from the report

    “There was a lack of communication between services about the relationship between the diagnosis of epilepsy and the psychotic symptoms experienced by the person responsible for the deaths. This led to significant time lapses in treatment and rejection of referrals, most notably: i. On 18 November 2020 an urgent referral was made to the Single Point of Access Team by his General Practitioner, concerned about his prolonged suicidal ideation. He was referred back to his General Practitioner by the Single Point of Access Team with a request that the General Practitioner refer him to access the Improving Access to Psychological Therapies Service. ii. On 20 November 2020 his General Practitioner referred him to the Single Point of Access Team again, requesting they liaise with the Improving Access to Psychological Therapies Service as per Trust guidelines. iii. Correspondence between the Improving Access to Psychological Therapies Service and the Single Point of Access Team revealed that whilst the Improving Access to Psychological Therapies Service offered work on living with chronic conditions, they did not have a programme specific to epilepsy. A referral to the Neurology Therapy Service was made and it was decided a request to the General Practitioner for the mental health nurse in the surgery to offer an assessment was appropriate. The surgery were not informed of this. iv. On 16 December 2020 the Single Point of Access Team received a referral from a consultant neurologist requesting a medication review as his anxiety levels were affecting his epilepsy treatment. It was felt at that as the General Practitioner was reviewing his medication, a review wasn’t required. This was not communicated to the consultant neurologist. v. On 29 April 2022 he called the Single Point of Access Team saying he was having a serious psychotic episode and thought he was going to kill someone. The call was treated as a crisis call during which he decided to attend the emergency department. Once there he was assessed by the Liaison Psychiatry Team. He was referred to the Home Treatment Team, but his consultant neurologist was not informed. vi. On 3 May 2022 a trial of anti-psychotic medication was discussed at a medical review. The required consultant review of whether to prescribe anti-psychotic medication with his epilepsy medication was not carried out. vii. On 4 May 2022 a referral to the Early Intervention Service was rejected as not meeting the criteria for first episode psychosis, despite clear evidence of psychosis in the assessment by the Liaison Psychiatry Team on 29 April 2022 and in subsequent contacts with the Home Treatment Team. viii. On 5 May 2022 a first referral was made to the Emotional Wellbeing Service via email asking for their input into his care. The email was sent to an address not manned daily. When a response was provided it was unclear whether a new treatment episode had been opened. ix. On 09 May 2022 he was discharged from the Home Treatment Team. The discharge was reliant on Emotional Wellbeing Service intervention and a follow up from his General Practitioner. A discharge summary was not sent to his General Practitioner. x. On 4 October 2022 a referral was sent to the Single Point of Access Team by his General Practitioner that he was presenting as paranoid and delusional with suicidal ideation. A screen for urgency found this was a routine referral. The referral was triaged on 22 November 2022 when he was invited to contact the Single Point of Access Team for a further discussion. ”

    Source location

    Bryan Andrews and Mary Andrews · Prevention of Future Deaths report
    Page 2 · concerns

    Open source report
  2. Staffordshire and Stoke-on-Trent

    AI-generated summary

    Joshua Ethan BURGESS · 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

    Joshua Ethan Burgess, who had epilepsy and Lennox-Gastaut syndrome, died at home on 19 November 2022 after vomiting and aspirating during an epileptic seizure. The report identifies concerns about communication and prescribing processes for Brivaracetam, including failures to update the prescription, medication being withheld for several days, and a subsequent increase to 10ml twice daily despite information that 4ml twice daily was appropriate.

    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 refer dosage-clarification correspondence to a clinician

    Wider context from the report

    “1. The Neurology department of the Royal Stoke University Hospital operated a system whereby it did not instruct the prescribing GP to amend the prescription of Brivaracetam when changes to dosage had been agreed with Mr Burgess’ mother. The evidence from the Consultant Neurologist was that an assumption was made that when changes to medication had been discussed and agreed that Mr Burgess’ mother would attend the GP surgery to discuss the changes in medication. The same witness gave evidence that it was assumed a pharmacist within the GP surgery would read the correspondence from the neurology department and make the necessary changes to prescriptions without express instructions to do so. 2. The “workflow” within the Brook Medical Centre was such that letters sent from the Neurology department discussing changes in medication (albeit not containing a request to amend the prescription) were processed by support staff and not referred to a clinician to consider and so no changes were made to the prescription. 3. The letter of 27 July 2022 from the Neurology department to Brook Medical Centre seeking clarification as to the correct dosage of Brivaracetam was processed by support staff and a summary medications sent without referral to a clinician. 4. Godfrey Care were informed by Mr Burgess’ mother and the Neurology department of Royal Stoke University that the appropriate dose of Brivaracetam was 4ml twice daily. Medication was withheld between 22-26 July 2022 due to the information not being in writing from the prescriber, however the evidence at inquest was that 10ml twice daily was commenced on 26 July 2022 following a call to the 111 service. ”

    Source location

    Joshua Ethan BURGESS · Prevention of Future Deaths report
    Page 3 · concerns

    Open source report

    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 refer medication-change correspondence to a clinician for consideration

    Wider context from the report

    “1. The Neurology department of the Royal Stoke University Hospital operated a system whereby it did not instruct the prescribing GP to amend the prescription of Brivaracetam when changes to dosage had been agreed with Mr Burgess’ mother. The evidence from the Consultant Neurologist was that an assumption was made that when changes to medication had been discussed and agreed that Mr Burgess’ mother would attend the GP surgery to discuss the changes in medication. The same witness gave evidence that it was assumed a pharmacist within the GP surgery would read the correspondence from the neurology department and make the necessary changes to prescriptions without express instructions to do so. 2. The “workflow” within the Brook Medical Centre was such that letters sent from the Neurology department discussing changes in medication (albeit not containing a request to amend the prescription) were processed by support staff and not referred to a clinician to consider and so no changes were made to the prescription. 3. The letter of 27 July 2022 from the Neurology department to Brook Medical Centre seeking clarification as to the correct dosage of Brivaracetam was processed by support staff and a summary medications sent without referral to a clinician. 4. Godfrey Care were informed by Mr Burgess’ mother and the Neurology department of Royal Stoke University that the appropriate dose of Brivaracetam was 4ml twice daily. Medication was withheld between 22-26 July 2022 due to the information not being in writing from the prescriber, however the evidence at inquest was that 10ml twice daily was commenced on 26 July 2022 following a call to the 111 service. ”

    Source location

    Joshua Ethan BURGESS · Prevention of Future Deaths report
    Page 3 · 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

    Implement a local medication policy covering medication receipt, transcription, altered labels, missed doses, written prescribing confirmation and triangulation between prescribers.

    Verbatim wording from the response

    “Reviewed Policies and Procedures The following actions will be implemented by 1st April 2024.”

    Source location

    Response from Godfrey Care
    Page 2 · response
    Published 21 February 2024

    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

    Review internal policies and procedures against the coroner’s concerns and identify necessary changes.

    Verbatim wording from the response

    “Godfrey Care Response We intend to review our internal policies and procedures considering the coroners concerns and identify where changes need to be made. Below, we respond to the coroner’s areas of concern, setting out what we have already done, what we are doing now, and what we intend to do in the future.”

    Source location

    Response from Godfrey Care
    Page 1 · response
    Published 21 February 2024

    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 staff medication competency assessments to test clarification of unclear directions, MAR-label discrepancies and verbal medication changes.

    Verbatim wording from the response

    “3 The Staff Medication Competency Assessment has been reviewed and now includes the following questions.”

    Source location

    Response from Godfrey Care
    Page 3 · response
    Published 21 February 2024

    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

    Have a GP review and triage all neurology correspondence and clinic letters received by Brook Medical Centre.

    Verbatim wording from the response

    “2. We have discussed the above process with nominated individuals from the ICS. Due to the timeframes that would be required for the creation of standardised template for clinic letters within the ‘Medisec’ system across the Trust, we are reiterating the Trust standards and ████████ has agreed, with immediate effect, that all clinic letters received from neurology will be reviewed by a GP at Brook Medical Centre. This has been implemented due to the acknowledgement that neurological conditions are often complex, and it is more likely that they will require frequent medication changes, titration and/or closer monitoring.”

    Source location

    Response from University Hospitals of North Midlands
    Page 2 · response
    Published 21 February 2024

    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 GP review and triage of all neurology correspondence received by Brook Medical Centre.

    Verbatim wording from the response

    “2. We have discussed the above process with nominated individuals from the ICS. Due to the timeframes that would be required for the creation of standardised template for clinic letters within the ‘Medisec’ system across the Trust, we are reiterating the Trust standards and ████████ has agreed, with immediate effect, that all clinic letters received from neurology will be reviewed by a GP at Brook Medical Centre. This has been implemented due to the acknowledgement that neurological conditions are often complex, and it is more likely that they will require frequent medication changes, titration and/or closer monitoring.”

    Source location

    Response from University Hospitals of North Midlands
    Page 4 · response
    Published 21 February 2024

    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

    Develop a standardised Medisec clinic-letter template specifying medication changes and clear prescribing actions for primary care.

    Verbatim wording from the response

    “1. The Trust’s outpatient clinic letter standards describe the structure of clinic letters based on standard headings. You will recall that ████████ (GP) gave evidence at the inquest to the effect that there were areas in the acute Trust setting which already provided discharge information which he considered to be of a ‘gold standard.’ The Trust is committed to working towards improving compliance with these standards. To support this, we are working towards creation of a standardised template in our ‘Medisec’ system (system where letters are created). This will include a section for changes to medications and clear actions for those in the primary care setting, for example, instructions for the prescribing GP to amend prescriptions.”

    Source location

    Response from University Hospitals of North Midlands
    Page 2 · response
    Published 21 February 2024

    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

    A standardised clinic-letter template cannot be created immediately because implementation across the Trust requires substantial timeframes.

    Verbatim wording from the response

    “2. We have discussed the above process with nominated individuals from the ICS. Due to the timeframes that would be required for the creation of standardised template for clinic letters within the ‘Medisec’ system across the Trust, we are reiterating the Trust standards and ████████ has agreed, with immediate effect, that all clinic letters received from neurology will be reviewed by a GP at Brook Medical Centre. This has been implemented due to the acknowledgement that neurological conditions are often complex, and it is more likely that they will require frequent medication changes, titration and/or closer monitoring.”

    Source location

    Response from University Hospitals of North Midlands
    Page 4 · response
    Published 21 February 2024

    Open published response

Export data

Your Excel file will include all 2 matching reports.

Classification: all classifications7 Sep 2023 – 7 Sep 2026 (Publication date)Recurring concern: Unreliable review and action on clinically significant incoming correspondence
Choose the tabs to include