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.

Care Quality Commission1
Department of Health and Social Care1
HM Prison and Probation Service1
Lewisham and Greenwich NHS Trust1
NHS England1
Practice Plus Group1
Thameside Prison1
The Children's 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 patient observation arrangements
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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. Inner South London

    AI-generated summary

    Mark Robert Smith · 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

    Mark Robert Smith, who was detained at HMP Thameside, died after an epileptic seizure led to cardiac arrest. The report describes concerns about medication prescribing and administration, hospital-to-prison discharge and communication, access to his cell, observation arrangements and records, staffing, and the lack of equipment for resuscitation.

    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 complete required patient observations

    Wider context from the report

    “(5) I am concerned there were numerous missed and falsified observation entries in Mark’s case and how similar incidents can be prevented given the reliance on handwritten sheets being scanned onto the system at a later stage. I appreciate the efforts made with training and audits. (Practice Plus Group) ”

    Source location

    Mark Robert Smith · Prevention of Future Deaths report
    Page 5 · concerns

    Open source report
  2. Surrey

    AI-generated summary

    Mia Louise Gauci-Lamport · 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

    Mia Louise Gauci-Lamport, who had treatment-resistant epilepsy and required full-time residential care, was found cyanotic and unresponsive at around 06.32 hours on 11 September 2023 after not being visually checked when a carer entered her room. Resuscitation was unsuccessful. The report raised concerns about inadequate night-time monitoring, incomplete medical records and insufficient clinical oversight and governance.

    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 provide sufficiently frequent direct night-time visual observations

    Wider context from the report

    “1. Lack of appropriate monitoring of Mia during the night: Mia’s underlying illness caused seizures which were multifocal, complex and variable from tonic-clonic, myoclonic to cluster and absence seizures. Her care plan stipulated that carers should enter her room every 15 minutes to undertake visual observations throughout the night to ensure Mia was in a safe position, was breathing and not at risk of asphyxiation. However, this did not take place as frequently as specified. Moreover, it was common practice amongst some carers to review images from a video monitor placed over Mia’s cot rather than direct visualisation despite it being recognised that the monitor was insufficiently sensitive to reassure the carer that Mia was breathing, seizure free and safe from asphyxiation. ”

    Source location

    Mia Louise Gauci-Lamport · Prevention of Future Deaths report
    Page 2 · 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

    Request monthly updates on monitoring-frequency and Paediatric Early Warning System audits to assess ongoing implementation and identify practice gaps.

    Verbatim wording from the response

    “In July 2024 following the coroner’s inquest and information from the independent investigator report, CQC requested monthly updates from TCT regarding the providers audits of frequency of monitoring of children and their Paediatric Early Warning System (PEWS). The audits and actions taken, provided CQC with assurance the leadership team continued to take positive action to address any gaps in practice that the audits identified.”

    Source location

    Response from CQC
    Page 4 · response
    Published 14 October 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

    Undertake a comprehensive inspection of the service, including assessment of overnight observations, care planning, clinical monitoring and governance.

    Verbatim wording from the response

    “In December 2023 CQC had received key information and started to plan for an inspection in February. On February 20th to 21st 2024 the CQC undertook a comprehensive inspection of TCT as part of our regulatory response to the notification of Mia’s sad death. The inspection looked at all five key questions of whether TCT is Safe, Effective, Caring, Responsive and Well-led. (Please see attached PDF). CQC do not provide ratings for children’s homes that are registered with Ofsted, as per our policy.”

    Source location

    Response from CQC
    Page 3 · response
    Published 14 October 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

    Implement and embed a shift handover protocol communicating required supervision and observations and recording the preceding shift’s clinical observations.

    Verbatim wording from the response

    “○ Shift Handover Protocol: A revised Shift Handover Protocol has been introduced to ensure that the level of supervision and observation required for each child is understood and clearly communicated during shift changes. Additionally, the last set of clinical observations from the prior shift are recorded and discussed at handover, ensuring a seamless transition and continuity of care. This protocol has been embedded across The Children’s Trust and is subject to continuous review and audit to ensure compliance.”

    Source location

    Response from The Children's Trust
    Page 3 · response
    Published 14 October 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

    Align frequency-of-monitoring policy and clinical guidelines with national best practice through wider consultation and critique.

    Verbatim wording from the response

    “A comprehensive review of our monitoring protocols and individualised care planning process has been undertaken which has led to several critical actions being identified, all of which are now overseen by robust internal governance:”

    Source location

    Response from The Children's Trust
    Page 2 · response
    Published 14 October 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 and audit video surveillance, wearable sensors, and other monitoring tools to ensure appropriate use alongside direct checks.

    Verbatim wording from the response

    “○ Monitoring Tools: A review of monitoring tools, including video surveillance and wearable sensors, has been completed. We continually ensure that these tools are appropriate for each child's needs and used correctly to provide effective oversight without replacing appropriate checks. This initial action is complete and is now continuously reviewed and audited in line with evidence-based practice.”

    Source location

    Response from The Children's Trust
    Page 3 · response
    Published 14 October 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

    Conduct overnight monitoring-practice audits and monthly quality walks to verify compliance with observation policies and care plans.

    Verbatim wording from the response

    “○ Frequency of Monitoring and PEWS Practice Audits: We have implemented new Frequency of Monitoring Practice audits overnight, conducted by Clinical Site Managers. This ensures continued compliance with the monitoring and observations policies. These audits are complemented by monthly quality walks to ensure the consistent implementation of care plans and protocols. This additional assurance mechanism is built into roles and responsibilities and findings from these audits feed into the broader clinical governance framework.”

    Source location

    Response from The Children's Trust
    Page 3 · response
    Published 14 October 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

    The Local Authority, not NHS England, is responsible for overseeing the quality of the residential care service because it commissioned the bed.

    Verbatim wording from the response

    “Mia was in a residential care bed, which is commissioned instead by the Local Authority. The commissioning body, in this case the LA, has the responsibility for oversight of the quality of the service. NHSE have provided assurance that their regional team has been working with system and other partners on responding to risks and concerns in a joint approach at this provider, which will be set out in their response. In case of interest, NHSE’s guidance on specialised services can be found here: NHS commissioning » Specialised services.”

    Source location

    Response from DHSC
    Page 2 · response
    Published 14 October 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

    Some concerns about Mia’s care are better addressed by Tadworth Children’s Trust and the Care Quality Commission.

    Verbatim wording from the response

    “Your Report raises multiple concerns in relation to the medical care and appropriate monitoring of Mia, including concerns regarding the access to clinical consultant care and a lack of adherence to her care plan within the residential care setting at Tadworth Children’s Trust (TCT). Noting you have also sent your Report to TCT and CQC, some of the concerns you raise may be better addressed by those organisations. In this response, I have addressed the matters of concern where NHS England are able to contribute and provide some assurance.”

    Source location

    Response from NHS England
    Page 1 · response
    Published 14 October 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

    Strengthened monitoring policies, audits and governance arrangements were considered sufficient to address risks concerning night-time observations and safe care.

    Verbatim wording from the response

    “Since the sad death of Connor Wellsted in 2022 and Mia’s death, CQC have undertaken three subsequent inspections which have demonstrated that TCT have taken the appropriate actions to ensure the governance processes around night time observations have been strengthened. CQC is assured with regard to its own regulatory functions, by the actions taken by TCT. Specifically this includes to strengthening the frequency of monitoring policy and increased their audits of the implementation of this policy.”

    Source location

    Response from CQC
    Page 6 · response
    Published 14 October 2024

    Open published response

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Classification: all classifications7 Sep 2023 – 7 Sep 2026 (Publication date)Recurring concern: Unreliable patient observation arrangements
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