Epilepsy, 19 Sep 2013 – 19 Jun 2026

Epilepsy-related Prevention of Future Deaths reports

All dates19 Sep 2013 – 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.

90All reports 19SUDEP 68Non-SUDEP

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.

HM Prison and Probation Service2
NHS England2
National Institute for Health and Care Excellence2
Practice Plus Group2
Royal College of General Practitioners2
College of Policing1
Community Disability Nurse1
Department of Health and Social Care1
Independent Futures1
Joint Royal Colleges Ambulance Liaison Committee1
London Ambulance Service NHS Trust1
National Police Chiefs’ Council1
Oxleas NHS Foundation Trust1
Pentonville Prison1
Rochester Prison1
Royal College of Emergency Medicine1
Royal College of Paediatrics and Child Health1
Royal College of Physicians1
Southwinds1
Stockport Borough Council1
Sussex Police1

Most commonly raised concerns

All classifications 90 reports 19 Sep 2013 – 7 Sep 2026

  1. Unreliable seizure care and managementControls dedicated to recognising, assessing, monitoring, responding to and managing seizures are not reliably provided.9 reportsSelected
  2. Incomplete, inaccurate or unavailable clinical and care recordsClinical and care records are incomplete, inaccurate, inconsistent, unavailable or otherwise unreliable for safe care.7 reportsSelected
  3. Unsafe medication administrationA recurring failure of the medication-administration system to ensure that medicines are administered safely, accurately, promptly and as prescribed.6 reportsSelected
  4. 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.4 reportsSelected
  5. 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
  6. 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.4 reportsSelected
  7. Unreliable hospital discharge processesHospital discharge does not reliably bring together planning, clinical readiness, relevant organisations, safe execution and required follow-up.4 reportsSelected
  8. 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
  9. 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
  10. Failure to provide timely clinical follow-up after medication prescribingPrescribed medication is not reliably followed up for effectiveness, safety, collection, adherence and patient response.3 reportsSelected
  11. 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.3 reportsSelected
  12. 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
  13. 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
  14. 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
  15. 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.3 reportsSelected
  16. 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.3 reportsSelected
  17. 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.3 reportsSelected
  18. Unreliable patient observation arrangementsPatient observation systems do not reliably set, support and deliver the observation level required by assessed safety risk.3 reportsSelected
  19. 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.3 reportsSelected
  20. 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
  21. Failure to communicate safety-critical care information effectively between care providers and familiesReports identify unsafe communication between care providers and families, including failures to convey risks, care instructions, concerns or other information needed to support safe care and decision-making.2 reportsSelected
  22. 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
  23. Failure to ensure safe prisoner transfersRecurring concern that the end-to-end prisoner transfer process is unreliable, leaving transferred prisoners exposed to unmanaged risks or interruptions in essential support.2 reportsSelected
  24. 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
  25. Failure to reliably document the rationale for consequential decisionsDifferent reports identify missing or inadequate records explaining the rationale and evidential basis for consequential decisions, including the anchor’s crucial decisions and comparable mental-capacity, NRPF and transfer decisions. The shared concern is unreliable rationale documentation for decisions that affect safety, accountability and continuity of care, rather than any one decision type or record system.2 reportsSelected
  26. 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
  27. 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
  28. Failure to reliably refer patients to required specialist servicesThe anchor identifies a required physiotherapy referral that was not completed. A different report identifies delayed referrals to physiotherapy, occupational therapy, dietetics and Parkinson’s specialist services. Together these support an end-to-end concern with required specialist referrals not being made promptly and reliably, rather than a concern limited to one physiotherapy referral.2 reportsSelected
  29. 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
  30. 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
  31. 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
  32. 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
  33. Incomplete clinical history-takingReports identify an unsafe clinical assessment condition in which relevant patient history is not obtained sufficiently to support recognition of symptoms, risks and appropriate care.2 reportsSelected
  34. 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
  35. 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
  36. Unreliable access to emergency communicationReports identify failures in dedicated emergency communication arrangements that can delay summoning or contacting emergency help.2 reportsSelected
  37. 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
  38. 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
  39. 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
  40. 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
  41. Unreliable management of medication doses not takenThe anchor identifies missing guidance for monitoring prescribed medication that self-administering patients do not take when dispensed. A different report identifies inconsistent procedures for responding when service users refuse or do not take medication. Together these support a recurring concern with the reliability of detecting, monitoring and escalating omitted or refused medication doses, rather than a concern limited to one guidance document or one home's procedure.2 reportsSelected
  42. 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
  43. Unreliable observation of people in custodyThe anchor report identifies failure to transfer and replicate medically required observation levels when a detained person moves into GEO AMEY custody, while a different report identifies uncertainty about whether the correct observation level, including constant watch, was provided to a person in prison custody. Together these support a recurring concern about the reliability of the custody observation process rather than only one handover or level-setting failure.2 reportsSelected
  44. Unreliable recording of required observations in care and custodyDifferent reports identify inaccurate, delayed, anticipatory or falsified records of required observations, including 15-minute observations in prison custody and patient-care settings. The shared unsafe condition is that observation records do not reliably reflect when and how observations were actually conducted, rather than any one observation frequency, recording location or electronic system.2 reportsSelected
  45. 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
  46. 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
  47. Unreliable urgent mental health referral and assessment pathwaysUrgent mental-health referral pathways do not reliably secure timely access, coordination and specialist assessment.2 reportsSelected
  48. Unreliable welfare-check processes for people whose health is of concernThe anchor identifies unclear purpose and use of the welfare sheet for monitoring prisoners whose health is of concern. A separate report identifies inconsistent criteria for what constitutes a welfare check and when it is recorded. Together these support a recurring concern with the reliability of the bounded welfare-check process, rather than only the sheet or recording component.2 reportsSelected
  49. Unsafe cell-sharing decisions for prisonersRecurring deficiencies in the prison cell-sharing risk system can leave prisoners exposed to unsafe pairings or prevent them from understanding changes affecting their cell-sharing status.2 reportsSelected
  50. 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 recurring concern

19 Sep 2013 – 7 Sep 2026 · 9 reports

Classification: all classificationsRecurring concern: Unreliable seizure care and management
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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. East London

    AI-generated summary

    Andrew Ewin-Ripp · 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

    Andrew Ewin-Ripp, who had epilepsy, suffered a fit at home on 1 November 2022, was found in cardiac arrest, and died in hospital on 4 November 2022. The reported cause of death was sudden unexpected death in epilepsy (SUDEP). Concerns included lengthy waits for neurology care, the absence of clear guidance and systems for monitoring, discharge information, and urgent review after seizure recurrence.

    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

    Lack of guidance on contacting the secondary care team after recurrent seizures

    Wider context from the report

    “There are believed to be around 500-600 SUDEP deaths in the UK each year. SUDEP deaths are common in young adults. The waiting times for outpatient neurology appointments is in the region of 9 months for the trust concerned. The inquest heard from an independent expert that it is not unusual to have waiting times of more than 6 months for outpatient neurology appointments. In the context of these lengthy waiting times, the following matters were of particular concern: (1) GP practices are not required to carry out annual reviews of epilepsy patients, as they are, for other chronic diseases. The independent consultant neurologist considered that annual reviews by general practitioners would provide an excellent safety net to prevent future SUDEP deaths. The reviews could incorporate checks on compliance with medication; reviews of any seizure activity and reminder of ways to reduce the risk of seizures. (2) There is clear national guidance in relation to how quickly patients should be seen following a first seizure, but no clear guidance around the longer-term monitoring of patients with epilepsy. How soon after the last seizure is it safe to discharge a patient? There is no clear guidance on this. (3) After discharge from the secondary care team, there was no clear guidance provided in relation to the importance of maintaining full compliance with medication even if seizure free for a very long period; the importance of notifying the GP and/or the secondary care team about the recurrence of any seizure activity or clear guidance on how best to make contact with the secondary care team in the event of recurrence of seizures. There was no system in place, or guidance, requiring practitioners to ensure that this essential information is passed to patients on discharge. (4) There was no care pathway for incorporating urgent reviews in neurology clinics in response to patients reporting concerns, such as a return of seizures or not tolerating medication. ”

    Source location

    Andrew Ewin-Ripp · 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

    Lack of discharge guidance on maintaining medication compliance despite prolonged seizure freedom

    Wider context from the report

    “There are believed to be around 500-600 SUDEP deaths in the UK each year. SUDEP deaths are common in young adults. The waiting times for outpatient neurology appointments is in the region of 9 months for the trust concerned. The inquest heard from an independent expert that it is not unusual to have waiting times of more than 6 months for outpatient neurology appointments. In the context of these lengthy waiting times, the following matters were of particular concern: (1) GP practices are not required to carry out annual reviews of epilepsy patients, as they are, for other chronic diseases. The independent consultant neurologist considered that annual reviews by general practitioners would provide an excellent safety net to prevent future SUDEP deaths. The reviews could incorporate checks on compliance with medication; reviews of any seizure activity and reminder of ways to reduce the risk of seizures. (2) There is clear national guidance in relation to how quickly patients should be seen following a first seizure, but no clear guidance around the longer-term monitoring of patients with epilepsy. How soon after the last seizure is it safe to discharge a patient? There is no clear guidance on this. (3) After discharge from the secondary care team, there was no clear guidance provided in relation to the importance of maintaining full compliance with medication even if seizure free for a very long period; the importance of notifying the GP and/or the secondary care team about the recurrence of any seizure activity or clear guidance on how best to make contact with the secondary care team in the event of recurrence of seizures. There was no system in place, or guidance, requiring practitioners to ensure that this essential information is passed to patients on discharge. (4) There was no care pathway for incorporating urgent reviews in neurology clinics in response to patients reporting concerns, such as a return of seizures or not tolerating medication. ”

    Source location

    Andrew Ewin-Ripp · 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

    Lack of discharge guidance on notifying clinicians about recurrent seizures

    Wider context from the report

    “There are believed to be around 500-600 SUDEP deaths in the UK each year. SUDEP deaths are common in young adults. The waiting times for outpatient neurology appointments is in the region of 9 months for the trust concerned. The inquest heard from an independent expert that it is not unusual to have waiting times of more than 6 months for outpatient neurology appointments. In the context of these lengthy waiting times, the following matters were of particular concern: (1) GP practices are not required to carry out annual reviews of epilepsy patients, as they are, for other chronic diseases. The independent consultant neurologist considered that annual reviews by general practitioners would provide an excellent safety net to prevent future SUDEP deaths. The reviews could incorporate checks on compliance with medication; reviews of any seizure activity and reminder of ways to reduce the risk of seizures. (2) There is clear national guidance in relation to how quickly patients should be seen following a first seizure, but no clear guidance around the longer-term monitoring of patients with epilepsy. How soon after the last seizure is it safe to discharge a patient? There is no clear guidance on this. (3) After discharge from the secondary care team, there was no clear guidance provided in relation to the importance of maintaining full compliance with medication even if seizure free for a very long period; the importance of notifying the GP and/or the secondary care team about the recurrence of any seizure activity or clear guidance on how best to make contact with the secondary care team in the event of recurrence of seizures. There was no system in place, or guidance, requiring practitioners to ensure that this essential information is passed to patients on discharge. (4) There was no care pathway for incorporating urgent reviews in neurology clinics in response to patients reporting concerns, such as a return of seizures or not tolerating medication. ”

    Source location

    Andrew Ewin-Ripp · Prevention of Future Deaths report
    Page 3 · concerns

    Open source report

  2. East Sussex

    AI-generated summary

    Trevor Alan MONERVILLE · 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

    Trevor Alan Monerville, who had been detained at HMP Lewes, was found unresponsive in his cell on 18 April 2021 and died after suffering from epilepsy and non-epileptic attack disorder. The principal concerns were inadequate monitoring and management of his epilepsy after the ACCT closed, poor communication and information-sharing between healthcare, prison staff and family, and insufficient staff training in managing epilepsy and seizures.

    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

    Lack of prison staff training in managing long-term health conditions on the wings

    Wider context from the report

    “c. There was a lack of training of prison staff in dealing with long term health conditions such as epilepsy on the wings. I understand there is a deficit in national policy within the prison service to manage and support prisoners with epilepsy and seizures. ”

    Source location

    Trevor Alan MONERVILLE · Prevention of Future Deaths report
    Page 2 · 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

    Lack of individualized seizure care planning and monitoring

    Wider context from the report

    “a. Consideration should be given to the review of the treatment, monitoring and management of patients with a history of epilepsy or seizures by both the prison staff and healthcare staff. In particular, there was no seizure care plan, no seizure diary and once the ACCT had closed on 10th March 2021, there was no formal mechanism of monitoring Trevor’s condition. Further, the ACCT is not a suitable mechanism for such monitoring. The CSRA policy is designed to protect other prisoners, but not those who suffer from medical conditions as Trevor suffered. PPG in their evidence to be considered relating to PFD matters state that a care plan dashboard is now in place at HMP Lewes but this does not appear to be individualized or tailored to the prisoner’s clinical requirements. ”

    Source location

    Trevor Alan MONERVILLE · Prevention of Future Deaths report
    Page 2 · 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

    Deficit in national policy for managing and supporting prisoners with epilepsy and seizures

    Wider context from the report

    “c. There was a lack of training of prison staff in dealing with long term health conditions such as epilepsy on the wings. I understand there is a deficit in national policy within the prison service to manage and support prisoners with epilepsy and seizures. ”

    Source location

    Trevor Alan MONERVILLE · 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

    Deliver First Aid at Work and Emergency First Aid training to identified prison staff, including responses to seizures.

    Verbatim wording from the response

    “HMPPS undertake First Aid needs assessments to ensure that sufficient emergency aid response is available on each site. First Aid at Work and Emergency First Aid training courses are delivered to identified prison staff, which includes emergency response to both minor and major seizures.”

    Source location

    Response from HM Prison and Probation Service
    Page 2 · response
    Published 19 January 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

    Create and maintain a SystmOne care plan hub with epilepsy templates and review-template links.

    Verbatim wording from the response

    “Practice Plus Group made it an organisational priority for 2023 to ensure that the use of personalised care plans is embedded throughout sites at which Practice Plus Group is the healthcare provider. Using the limited capacity in which Practice Plus Group can make changes to SystmOne, the electronic medical records system, a care plan hub has been created to support clinical staff in accessing appropriate templates. This includes a specific care plan to support management of epilepsy and a direct link to the epilepsy care plan has been added within the review template for epilepsy annual reviews. Staff received training on the use of the care planning hub on SystmOne via workshops, regular updates and in June 2023 staff received a care plan guide.”

    Source location

    Response from Practice Plus Group
    Page 2 · response
    Published 19 January 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

    Use SystmOne recalls to schedule, monitor and allocate long-term-condition reviews.

    Verbatim wording from the response

    “Care planning workshops for the healthcare teams at HMP Lewes were facilitated by the national and regional primary care leads. The SystmOne recall functionality is being utilised to ensure a systematic approach is adopted for long term condition reviews and that these are monitored and staff allocated to book patients into clinics when required. Healthcare staff working at HMP Lewes have also been provided with access to a training module ‘Epilepsy training for primary care nurses’. This training is there to provide support on identifying different types of seizures, treatment review etc.”

    Source location

    Response from Practice Plus Group
    Page 2 · response
    Published 19 January 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 samples of epilepsy care plans for quality improvement and alignment with national guidelines.

    Verbatim wording from the response

    “Practice Plus Group amended the process for reporting on care plans approximately 18 months ago and have seen positive progress in the quantitative data. Over the last 3-4 months a process to review a small sample of these plans to support quality improvement and align with national guidelines has been started. As HMP Lewes is a remand site, the completion rate will always be variable whilst new patients await their initial long term condition review. On review for December 2023, 83% of patients with epilepsy at HMP Lewes now have a documented care plan. The team are striving to achieve 100%, however the data taken at the end of the month is reflective of the prison’s population at that point in time and new arrivals in the last few days/week who have not yet received a long term conditions review would affect this figure.”

    Source location

    Response from Practice Plus Group
    Page 3 · response
    Published 19 January 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

    Complete epilepsy reviews and agree individualized care plans with patients.

    Verbatim wording from the response

    “Response: Oversight of patients with long term conditions is currently being carried out by the long term conditions nurse and primary care nurses, supported by the regional primary care lead and inclusive of prescribers where applicable. In order to ensure that patients with epilepsy are monitored and supported through a patient-centred approach, the long term conditions nurse has been completing reviews and agreeing a personal care plan with the patient that is specific to their individual needs. This is aligned with the wider work that has taken place on long term conditions management pathways.”

    Source location

    Response from Practice Plus Group
    Page 2 · response
    Published 19 January 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

    Audit and monitor long-term-condition care plans to maintain progress.

    Verbatim wording from the response

    “The most recent inspection report from HMIP/CQC dated 23 February 2023 states “Patients with long-term conditions had timely reviews, and a new care plan hub made sure clinicians and patients jointly managed care, which was safe and well-coordinated”. We will continue to regularly audit and monitor the long term conditions care plans of patients at HMP Lewes to ensure progress is maintained.”

    Source location

    Response from Practice Plus Group
    Page 3 · response
    Published 19 January 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

    Train healthcare staff to use the care planning hub through workshops, updates and guidance.

    Verbatim wording from the response

    “Practice Plus Group made it an organisational priority for 2023 to ensure that the use of personalised care plans is embedded throughout sites at which Practice Plus Group is the healthcare provider. Using the limited capacity in which Practice Plus Group can make changes to SystmOne, the electronic medical records system, a care plan hub has been created to support clinical staff in accessing appropriate templates. This includes a specific care plan to support management of epilepsy and a direct link to the epilepsy care plan has been added within the review template for epilepsy annual reviews. Staff received training on the use of the care planning hub on SystmOne via workshops, regular updates and in June 2023 staff received a care plan guide.”

    Source location

    Response from Practice Plus Group
    Page 2 · response
    Published 19 January 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

    Training prison staff to manage epilepsy and seizures is a matter for His Majesty’s Prison and Probation Service.

    Verbatim wording from the response

    “Response: This concern is for His Majesty’s Prison and Probation Service to address. However, as always Practice Plus Group are committed to working collaboratively with our prison colleagues to support the safety and wellbeing of our patients and would fully support any prison led epilepsy awareness campaign for officers and wing staff.”

    Source location

    Response from Practice Plus Group
    Page 4 · response
    Published 19 January 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

    Healthcare provider PPG is responsible for seizure care plans, diaries and long-term health management; prison staff facilitate its instructions.

    Verbatim wording from the response

    “As was heard at the inquest, the creation of a seizure care plan and seizure diary, a clinical matter, falls within the responsibility of the healthcare provider at HMP Lewes, Practice Plus Group (PPG). It is within PPG’s remit to decide which prisoners are fit to be managed on a standard wing and, where a health condition such as epilepsy is identified, whether the severity of this means they should be located on the inpatient wing. HMPPS will facilitate a move to the inpatient unit where this is required.”

    Source location

    Response from HM Prison and Probation Service
    Page 1 · response
    Published 19 January 2024

    Open published response

  3. Inner North London

    AI-generated summary

    Amarjit SINGH · 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

    Amarjit Singh, aged 41, was found dead in his cell at HMP Pentonville on the morning of 21 November 2021 after his cellmate reported that he had suffered a fit, but medical attention was not sought and the cell door remained locked. The inquest jury determined that he died from natural causes, contributed to by neglect. Outstanding concerns included a careless cell-sharing risk assessment and gaps in prison staff and prisoner guidance and first-aid understanding, including failures to recognise the need for CPR or distinguish unconsciousness from death.

    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

    Lack of seizure-response training for prison staff

    Wider context from the report

    “2. Though I was told that training for prison staff in how to deal with fits is to be given at HMP Pentonville in October 2023, I heard that there is only a hope that prisoners will also receive some guidance in what to do if their cellmate suffers a fit. Apparently, this has already been implemented in HMP Brixton. ”

    Source location

    Amarjit SINGH · Prevention of Future Deaths report
    Page 2 · 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

    Unavailability of guidance for prisoners responding to a cellmate’s fit

    Wider context from the report

    “2. Though I was told that training for prison staff in how to deal with fits is to be given at HMP Pentonville in October 2023, I heard that there is only a hope that prisoners will also receive some guidance in what to do if their cellmate suffers a fit. Apparently, this has already been implemented in HMP Brixton. ”

    Source location

    Amarjit SINGH · 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

    Schedule training for prison staff at HMP Pentonville on responding to fits.

    Verbatim wording from the response

    “Training for prison staff in how to deal with fits is scheduled to be given at HMP Pentonville in October, and prisoners are given instructions at their induction on how to report concerns regarding a cellmate and the need to ring the emergency cell bell in circumstances where their cellmate is unwell so that staff can ensure healthcare attend.”

    Source location

    Response from HM Prison and Probation Service
    Page 2 · response
    Published 22 September 2023

    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

    Prison authorities, rather than healthcare, are responsible for addressing staff training and prisoner guidance on managing seizures and first aid.

    Verbatim wording from the response

    “Only number 1 above relates to healthcare, and therefore PPG, so we do not propose to respond to points 2 and 3, which no doubt will be addressed by the Prison.”

    Source location

    Response from Practice Plus Group
    Page 2 · response
    Published 22 September 2023

    Open published response

  4. Surrey

    AI-generated summary

    Louis James Rogers · 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

    Louis James Rogers died after being found unresponsive at home following a period of clinical illness and was pronounced dead on 18 June 2021 despite resuscitation attempts. Autopsy identified a viral infection, and genetic studies confirmed Dravet’s Syndrome. The report raised concerns about the management and investigation of febrile seizures, information provided to parents, paramedic and general practice guidance, and the lack of a coordinated febrile seizure pathway.

    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 document general practice assessment of febrile seizures

    Wider context from the report

    “4. General Practice - At his mother’s request after the possibility of a further seizure, Louis was reviewed by his general practitioner on the 13th May 2021 following which Louis’s mother was reassured without a detailed history from Louis’s mother or a full neurological examination and in the absence of documentation in circumstances whereby it was acknowledged there was sufficient information at that time to refer Louis to secondary services for the management of children with febrile seizures. It would therefore be appropriate to consider providing robust national guidance and education to general practitioners to ensure appropriate history, examination, investigation are undertaken to allow timely referrals to secondary medical services to be undertaken. ”

    Source location

    Louis James Rogers · 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 make timely referrals from general practice to secondary medical services for febrile seizures

    Wider context from the report

    “4. General Practice - At his mother’s request after the possibility of a further seizure, Louis was reviewed by his general practitioner on the 13th May 2021 following which Louis’s mother was reassured without a detailed history from Louis’s mother or a full neurological examination and in the absence of documentation in circumstances whereby it was acknowledged there was sufficient information at that time to refer Louis to secondary services for the management of children with febrile seizures. It would therefore be appropriate to consider providing robust national guidance and education to general practitioners to ensure appropriate history, examination, investigation are undertaken to allow timely referrals to secondary medical services to be undertaken. ”

    Source location

    Louis James Rogers · Prevention of Future Deaths report
    Page 5 · 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

    Lack of coordinated response across clinicians to febrile seizure presentations

    Wider context from the report

    “5. Febrile Seizure Pathway Evidence was heard that Louis was seen by a number of clinicians without a co-ordinated response to his presentation and that consideration should be given for all hospitals emergency departments and GP’s to be provided with a febrile seizure pathway as a checklist to ensure children are not given a diagnosis of a ‘febrile seizure when this is not supported by their presentation and for all consultations – including GP appointment and information from the paramedics is available for all clinicians to view to provide a holistic picture and to assist further management. ”

    Source location

    Louis James Rogers · Prevention of Future Deaths report
    Page 5 · 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

    Delays in referral for assessment and investigation of febrile seizures

    Wider context from the report

    “1. Management and investigation of Febrile Seizures Evidence was heard that a number of children who have ‘febrile’ seizures subsequently die from ‘sudden unexpected death in childhood’. Evidence was provided that there should be greater emphasis on medical education, research and public information for sudden unexpected deaths associated with febrile seizures. Further evidence was heard that referrals for assessment and investigation of febrile seizures should be undertaken earlier to exclude a more severe underlying illness. ”

    Source location

    Louis James Rogers · 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 ensure febrile seizure diagnoses are supported by the child’s presentation

    Wider context from the report

    “5. Febrile Seizure Pathway Evidence was heard that Louis was seen by a number of clinicians without a co-ordinated response to his presentation and that consideration should be given for all hospitals emergency departments and GP’s to be provided with a febrile seizure pathway as a checklist to ensure children are not given a diagnosis of a ‘febrile seizure when this is not supported by their presentation and for all consultations – including GP appointment and information from the paramedics is available for all clinicians to view to provide a holistic picture and to assist further management. ”

    Source location

    Louis James Rogers · Prevention of Future Deaths report
    Page 5 · 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 follow escalation guidance for complex febrile seizures

    Wider context from the report

    “3. Improvement to and highlighting of the JRCALC guidelines for paramedic management of seizures in children JRCALC guidelines indicated paramedics should have conveyed Louis to hospital or contacted the GP and/or Out of Hours GP service following Louis’s second seizure on 11th February 2020, as the close proximity of two seizures indicated it was a ‘complex febrile seizure’ rather than a febrile seizure. This led to a lost opportunity to expeditiously trigger further investigation and/or a referral to either the ‘first seizure’ service or to a specialist paediatrician for further assessment and management. Evidence was heard that improving and highlighting JRCALC guidelines with additional teaching would prevent this happening again. ”

    Source location

    Louis James Rogers · Prevention of Future Deaths report
    Page 4 · 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

    Replace the epilepsy guideline with updated recommendations on referral and information and support after a first seizure.

    Verbatim wording from the response

    “We believe that our guideline on epilepsies: diagnosis and management [CG137], which was in place at the time of Louis’ death, is directly relevant to this case. The guideline covered diagnosing, treating and managing epilepsy and seizures in children, young people and adults in primary and secondary care and made recommendations on what should happen following a first seizure (section 1.4), diagnosis (section 1.5) and investigations (sections 1.6).”

    Source location

    Response from NICE
    Page 1 · response
    Published 31 March 2023

    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

    Ask colleagues from seven NHS regions to share learning and available guidance with Integrated Care Boards for cascading to relevant healthcare professionals.

    Verbatim wording from the response

    “As a result of your Report, we will also be asking colleagues from each of the seven NHS regions to share the learnings from this matter and the guidance available with their Integrated Care Boards for cascading to relevant healthcare professionals.”

    Source location

    Response from NHS England
    Page 3 · response
    Published 31 March 2023

    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 the JRCALC guidance on convulsions in children.

    Verbatim wording from the response

    “I can confirm that I have liaised with the Chair of the JRCALC committee and that a review of the convulsions in children guidance has been undertaken. The JRCALC guidelines are used regularly by ambulance clinicians in everyday practice. Having reviewed our guideline we agree that if our guideline had been followed, Louis should have either been conveyed to hospital on 11th February 2021 when he had a second seizure that day or he should have been referred to a GP.”

    Source location

    Response from Association of Ambulance
    Page 1 · response
    Published 31 March 2023

    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

    Inform ambulance-service medical directors and lead paramedics about the death and ask them to review relevant JRCALC guidance and local pathways.

    Verbatim wording from the response

    “We have taken an action to make all the medical directors and lead paramedics of UK ambulance services aware of the circumstances of Louis’ death and have asked them to review the JRCALC guidance and any local pathways or guidance in relation to decisions around conveying children after seizures. We have also reminded ambulance trusts of a best practice guidance document that was written, approved and disseminated by NASMeD to ambulance trusts in July 2021: “Conveyance of children by operational ambulance clinicians in face-to-face settings” (attached). This was developed as a result of a Health Services Investigation Branch (HSIB) recommendation issued to us in June 2019 in relation to a case of an undetected button and coin cell battery ingestion in a child.”

    Source location

    Response from Association of Ambulance
    Page 2 · response
    Published 31 March 2023

    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

    Remind ambulance trusts about best-practice guidance on conveying children in face-to-face operational ambulance care.

    Verbatim wording from the response

    “We have taken an action to make all the medical directors and lead paramedics of UK ambulance services aware of the circumstances of Louis’ death and have asked them to review the JRCALC guidance and any local pathways or guidance in relation to decisions around conveying children after seizures. We have also reminded ambulance trusts of a best practice guidance document that was written, approved and disseminated by NASMeD to ambulance trusts in July 2021: “Conveyance of children by operational ambulance clinicians in face-to-face settings” (attached). This was developed as a result of a Health Services Investigation Branch (HSIB) recommendation issued to us in June 2019 in relation to a case of an undetected button and coin cell battery ingestion in a child.”

    Source location

    Response from Association of Ambulance
    Page 2 · response
    Published 31 March 2023

    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

    Continue reviewing the convulsions guidance through regular clinical-guideline review activity.

    Verbatim wording from the response

    “In summary, having reviewed our guidance related to convulsions in children, we do not believe that it needs improving at present. We will review it as part of our ongoing work to ensure that all our clinical guidelines are reviewed on a regular basis and kept as up to date as possible with any new clinical evidence that we become aware of.”

    Source location

    Response from Association of Ambulance
    Page 2 · response
    Published 31 March 2023

    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

    NICE is responsible for producing clinical guidance on the diagnosis, treatment and management of febrile seizures.

    Verbatim wording from the response

    “The National Institute for Health and Care Excellence (NICE) are responsible for producing clinical guidance for health and care practitioners on the issue of febrile seizures. Their guidance on Epilepsies in children, young people and adults (NG127) covers the diagnosis, treatment and management, referral recommendations and information and support for the management of epilepsy and seizures in children:”

    Source location

    Response from NHS England
    Page 1 · response
    Published 31 March 2023

    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

    Existing national guidance is considered sufficient for managing febrile seizures.

    Verbatim wording from the response

    “NHS England has been sighted on the response to your Report from NICE, who have advised that there is sufficient national guidance regarding the management of febrile seizures.”

    Source location

    Response from NHS England
    Page 2 · response
    Published 31 March 2023

    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

    Existing national guidance and the Clinical Knowledge Summary are considered sufficient to support timely assessment, investigation and referral for febrile seizures.

    Verbatim wording from the response

    “We believe that our guideline on epilepsies: diagnosis and management [CG137], which was in place at the time of Louis’ death, is directly relevant to this case. The guideline covered diagnosing, treating and managing epilepsy and seizures in children, young people and adults in primary and secondary care and made recommendations on what should happen following a first seizure (section 1.4), diagnosis (section 1.5) and investigations (sections 1.6).”

    Source location

    Response from NICE
    Page 1 · response
    Published 31 March 2023

    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

    RCEM will not lead development of further guidance because the project would be a significant undertaking, but can contribute with other organisations.

    Verbatim wording from the response

    “RCEM would be happy to work with NHS England / National Institute for Healthcare Excellence, Royal Colleges and other interested parties to help develop further evidence based or consensus guidance in this complex area of clinical practice. We are mindful that this would be a significant undertaking and that it would therefore not be appropriate for RCEM to take the lead on such a project.”

    Source location

    Response from Emergency Care Committee
    Page 1 · response
    Published 31 March 2023

    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 convulsions-in-children guideline does not need improvement at present, subject to routine review and updating when new clinical evidence emerges.

    Verbatim wording from the response

    “In summary, having reviewed our guidance related to convulsions in children, we do not believe that it needs improving at present. We will review it as part of our ongoing work to ensure that all our clinical guidelines are reviewed on a regular basis and kept as up to date as possible with any new clinical evidence that we become aware of.”

    Source location

    Response from Association of Ambulance
    Page 2 · response
    Published 31 March 2023

    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

    AACE is the appropriate organisation to decide whether JRCALC guidelines for paramedic seizure management require updates.

    Verbatim wording from the response

    “Regarding any updates to be made to JRCALC guidelines for paramedic management of seizures in children, I have been sighted on the response to your Report from the”

    Source location

    Response from NHS England
    Page 3 · response
    Published 31 March 2023

    Open published response

  5. Mid Kent and Medway

    AI-generated summary

    John Allen Martin HENDERSON · 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

    John Allen Martin Henderson was found dead in his bunk at HMP Rochester on 27 May 2021. The inquest recorded natural causes, namely ischaemic heart disease, following a fatal haemorrhage into the wall of the left circumflex artery. Concerns included delayed medical investigations, the absence of a welfare check at the start of the day, and a lack of a clear process for sharing relevant medical information with front-line prison staff.

    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 closer monitoring for prisoners with seizure activity

    Wider context from the report

    “During the course of evidence, I also established that John was not being monitored any more closely than other prisoners due to his seizure activity. That was confirmed by ████████ ████████ in the course of their evidence. They indicated to me that sometimes they will be asked to monitor prisoners more closely but this had not been applied to John. Likewise, nobody had checked the welfare of John at the start of the day on 27 May 2021. ”

    Source location

    John Allen Martin HENDERSON · 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

    Implement Personal Management Plans to obtain consent, share relevant medical alerts and guidance, record required observations, and review at multidisciplinary prison meetings.

    Verbatim wording from the response

    “Since this inquest, Oxleas NHS Foundation Trust has worked closely with HMPPS to introduce a Personal Management Plan (PMP) which provides a way of sharing information between healthcare staff and prison officers.”

    Source location

    Response from Oxleas Forensic and Offender Healthcare Services
    Page 1 · response
    Published 25 January 2023

    Open published response

  6. South London

    AI-generated summary

    Raphael Jeffery Gill · 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

    Raphael Jeffery Gill was stopped by police, arrested for drug-related offences, and suffered multiple seizures, including seizures in police care and an ambulance. The inquest identified delays in ambulance response and hospital assessment, failure to recognise the combination of seizures and cocaine as a medical emergency, and omission or delay in carrying out a venous blood gas test. The medical cause of death was recorded as multiple seizures associated with an underlying seizure disorder, cocaine and prescribed medication.

    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 recognise the combination of seizures and cocaine as a medical emergency

    Wider context from the report

    “(1) The evidence of the medical expert was that Mr Gill was so unwell by the time he arrived at hospital that it was more likely than not that his life was not rescuable with sooner treatment. Whilst Mr Gill was taken to hospital, it was not under blue lights and sirens, and the most senior clinician drove so was not on hand to provide emergency treatment that the technician was unqualified to provide. It was apparent that the ambulance crew were not aware that the combination of seizures and cocaine represented a medical emergency, a fact expressly found in the jury’s conclusion. (2) Whilst it was reasonable for the LAS staff to suspect a link between the arrest and seizures, the arrest unduly influenced the assessment of urgency. ”

    Source location

    Raphael Jeffery Gill · 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

    Share the PFD report with the JRCALC Chair for consideration of further review of guidance on cocaine use and seizure activity.

    Verbatim wording from the response

    “Whilst we note that there was no undue delay on the scene once the conveying ambulance had arrived, we are aware that your view is that the clinicians were unaware that seizures on the background of cocaine use may present a marked clinical concern. Our Consultant Paramedic has reviewed the guidance within the Joint Royal Colleges Ambulance Liaison Committee (JRCALC) Clinical Guidelines and is of the view that these contain a detailed set of guidelines for the management of patients who have used cocaine and seizure activity is specifically detailed. Our Chief Medical Officer will share your PFD report with the Chair of the JRCALC to allow for consideration of further review of the guidance.”

    Source location

    Response from London Ambulance Service
    Page 3 · response
    Published 5 May 2022

    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

    Produce and publish an internal clinical refresher for frontline clinicians on cocaine-related risks and red-flag presentations.

    Verbatim wording from the response

    “In terms of the LAS, we will produce an internal clinical refresher for all frontline clinicians, which will be shared in our internal 'Clinical Update' publication around the risks associated with cocaine to continue highlighting the 'red flag' presentations in respect of patients who have used cocaine. This is planned to be published in early Autumn 2022.”

    Source location

    Response from London Ambulance Service
    Page 3 · response
    Published 5 May 2022

    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

    Existing JRCALC clinical guidelines already provide detailed guidance on cocaine use, including specifically addressing seizure activity.

    Verbatim wording from the response

    “Whilst we note that there was no undue delay on the scene once the conveying ambulance had arrived, we are aware that your view is that the clinicians were unaware that seizures on the background of cocaine use may present a marked clinical concern. Our Consultant Paramedic has reviewed the guidance within the Joint Royal Colleges Ambulance Liaison Committee (JRCALC) Clinical Guidelines and is of the view that these contain a detailed set of guidelines for the management of patients who have used cocaine and seizure activity is specifically detailed. Our Chief Medical Officer will share your PFD report with the Chair of the JRCALC to allow for consideration of further review of the guidance.”

    Source location

    Response from London Ambulance Service
    Page 3 · response
    Published 5 May 2022

    Open published response

  7. Manchester South

    AI-generated summary

    James Thomas Wheeler · 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

    James Thomas Wheeler, who had refractory epilepsy alongside cerebral palsy and severe learning disability, was found unresponsive at Cheddle Lodge on 22 January 2018 and died shortly afterwards. The inquest concluded that he died following a nocturnal epileptic seizure while unobserved and not actively monitored. Concerns included the lack of authoritative UK guidance on monitoring people with refractory epilepsy and assistive technology, failures to provide required annual Care Act Reviews, and insufficient resources for local authorities to fulfil those duties.

    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

    Lack of authoritative guidance on monitoring people with refractory epilepsy

    Wider context from the report

    “1. To Sir Andrew Dillon, Chief Executive, National Institute of Health and Care Excellence The court heard that there is currently an absence of authoritative guidance in the United Kingdom as to the monitoring of people with refractory epilepsy, both in hospital and community care settings. A particular feature of this case was the absence of guidance as to the availability and use of assistive technology in monitoring individuals thought to be at high risk as a result of seizures. ”

    Source location

    James Thomas Wheeler · 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

    Lack of guidance on the availability and use of assistive technology for monitoring people at high risk from seizures

    Wider context from the report

    “1. To Sir Andrew Dillon, Chief Executive, National Institute of Health and Care Excellence The court heard that there is currently an absence of authoritative guidance in the United Kingdom as to the monitoring of people with refractory epilepsy, both in hospital and community care settings. A particular feature of this case was the absence of guidance as to the availability and use of assistive technology in monitoring individuals thought to be at high risk as a result of seizures. ”

    Source location

    James Thomas Wheeler · 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

    Pass the stated concerns about monitoring refractory epilepsy and assistive technology to the guideline committee to inform its work.

    Verbatim wording from the response

    “I have considered the circumstances surrounding Mr Wheeler’s death, and your concern that there is no national guidance on how to monitor people with refractory epilepsy (both in hospital and community care settings), including the use of assistive technology for those thought to be at high risk of seizures.”

    Source location

    2020-0001-Response-from-NICE-Redacted
    Page 1 · response
    Published 22 January 2020

    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 the epilepsy guideline by reviewing evidence on seizure-detection technologies, epilepsy-related mortality risk factors, and interventions reducing seizure-related mortality.

    Verbatim wording from the response

    “This guideline (CG137) is currently in the early stages of being updated.”

    Source location

    2020-0001-Response-from-NICE-Redacted
    Page 2 · response
    Published 22 January 2020

    Open published response

  8. West Sussex

    AI-generated summary

    Duncan Tomlin · 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

    Duncan Tomlin died on 29 July 2014 after cardiac arrest following the use of drugs and police prone restraint, including handcuffs, leg restraints and incapacitant spray. The report identified concerns about insufficient emphasis on the heightened breathing risks of multiple factors, delayed opportunities to assess and reposition him, inadequate guidance on monitoring, the timing of CPR, and understanding atypical or post-seizure behaviour.

    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

    Insufficient training on atypical seizure and post-seizure behaviour

    Wider context from the report

    “Understanding aspects of Epilepsy and Seizures 5. The training material which has been provided to me on behalf of Sussex Police covers many aspects of epilepsy and seizure that were explored during the inquest. The training material indicates that if it is available to the trainer, participants will be shown a video which informs the viewer of the way in which a person may present post seizure, namely confused, vulnerable, perceiving aggression from others and at risk of lashing out due to misunderstanding. I have also been provided with a copy of a training manual provided by Epilepsy Action which was sent to ACPO in 2011. Aspects of the evidence from the family in this inquest were entirely consistent with the less common presentations of a person in an atypical or post seizure state. Although epilepsy was not found to be causative in the death in this Inquest, in another situation with a similar set of circumstances, the reactions of a person suffering an atypical seizure or in a post seizure state, could be misconstrued as violence and resistance were officers not to appreciate that fact that their presentation may be part of a medical condition and restraint in such circumstances could have inherent and fatal risks. It is therefore of importance that training extends beyond the two more well known types of seizure and that post seizure behaviour is also understood in general terms. ”

    Source location

    Duncan Tomlin · Prevention of Future Deaths report
    Page 4 · 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

    Include an epilepsy video in initial officer training and refresh it during refresher training every three years.

    Verbatim wording from the response

    “In relation to epilepsy in particular, there is a video which is included in the initial officer training course and is refreshed every 3 years in the refresher training. Sussex Police are considering hosting a link to that video on their internal website for all officers to be able to view.”

    Source location

    2019-0135-Response-by-Sussex-Police
    Page 3 · response
    Published 14 June 2019

    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

    Basic first-aid training provides officers with knowledge and skills suitable for their policing role.

    Verbatim wording from the response

    “Police officers are not trained to the level of medical practitioners. All police officers have basic first aid training (First Aid – Module 2 of the College of Policing curriculum which includes conducting CPR and managing a casualty who is convulsing) which gives them the knowledge and skills suitable for their role. It is the expectation that they recognise signs and symptoms of a wide variety of medical conditions. It is unrealistic to expect officers to have the knowledge of medical professionals, as the risks posed to themselves and others in trying to take action in which they are not trained is too great. Officers will carry out a dynamic risk assessment of any risk posed by a violent individual – whether the violence is caused by a medical condition or otherwise – and make a decision based on that risk assessment at that time”

    Source location

    2019-0135-Response-by-Sussex-Police
    Page 3 · response
    Published 14 June 2019

    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

    Changes to nationally agreed police training packages require approval through national policing bodies rather than unilateral force action.

    Verbatim wording from the response

    “We are currently delivering nationally agreed training packages and any alteration to these should be agreed nationally with approval of all parties. The benefit in delivering training packages (for all mandatory training, not just Personal Safety Training) is they are consistent across the UK, all police officers are trained in the most current, relevant and up to date thinking which is designed using the latest research and learning from all Forces. We are aware this is currently being reviewed by NPCC and any alterations passed onto Forces in order for them to include in their training. It would be expected these alterations would be completed by the end of 2020.”

    Source location

    2019-0135-Response-by-Sussex-Police
    Page 2 · response
    Published 14 June 2019

    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

    Officers cannot reasonably be expected to possess medical professionals’ knowledge because attempting untrained interventions could pose excessive risks.

    Verbatim wording from the response

    “Police officers are not trained to the level of medical practitioners. All police officers have basic first aid training (First Aid – Module 2 of the College of Policing curriculum which includes conducting CPR and managing a casualty who is convulsing) which gives them the knowledge and skills suitable for their role. It is the expectation that they recognise signs and symptoms of a wide variety of medical conditions. It is unrealistic to expect officers to have the knowledge of medical professionals, as the risks posed to themselves and others in trying to take action in which they are not trained is too great. Officers will carry out a dynamic risk assessment of any risk posed by a violent individual – whether the violence is caused by a medical condition or otherwise – and make a decision based on that risk assessment at that time”

    Source location

    2019-0135-Response-by-Sussex-Police
    Page 3 · response
    Published 14 June 2019

    Open published response

  9. Staffordshire South

    AI-generated summary

    John Keith Edwards · 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

    John Keith Edwards, aged 64, was admitted to a care home for respite and subsequently suffered falls, seizures, reduced mobility, pressure sores and a rapid decline before dying in a nursing home on 19 December 2016. Concerns included inadequate care-home policies and care, failures to seek medical assistance and recognise deterioration, poor record-keeping, and inappropriate placement for his complex needs.

    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 seek medical assistance following seizures

    Wider context from the report

    “(1) Southwinds Care home did not appear to be able to cope with Mr Edwards complex care needs. Consequently the original placement appeared to be inappropriate (2) The Care Home had an inadequate policy to deal with falls and no policy for pressure sore prevention and care (3) Care Home staff applied a seizure policy which was not specific to the resident. (4) Care Home staff failed to seek medical assistance following seizures. (5) Care Home staff failed to deal with significant bruising which developed 8 days after admission to the Care Home. (6) Care records were retrospectively filled in. (7) Staff and management failed to recognise and seek help for the residents deteriorating condition other than by way of an out of hours attendance when the GP was given minimal information and the urgent follow up request was not done. (8) Staff were unaware that medication brought in by the family was available to Mr Edwards, therefore it was not given. None was sought from the GP. (9) Non patient specific dressings were used on pressure sores. (10) A non-patient specific mattress was used on his bed. (11) Visits by the placement officer and disability nurse failed to identify Mr Edward’s deteriorating condition. ”

    Source location

    John Keith Edwards · Prevention of Future Deaths report
    Page 2 · 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

    Use of a seizure policy not specific to the resident

    Wider context from the report

    “(1) Southwinds Care home did not appear to be able to cope with Mr Edwards complex care needs. Consequently the original placement appeared to be inappropriate (2) The Care Home had an inadequate policy to deal with falls and no policy for pressure sore prevention and care (3) Care Home staff applied a seizure policy which was not specific to the resident. (4) Care Home staff failed to seek medical assistance following seizures. (5) Care Home staff failed to deal with significant bruising which developed 8 days after admission to the Care Home. (6) Care records were retrospectively filled in. (7) Staff and management failed to recognise and seek help for the residents deteriorating condition other than by way of an out of hours attendance when the GP was given minimal information and the urgent follow up request was not done. (8) Staff were unaware that medication brought in by the family was available to Mr Edwards, therefore it was not given. None was sought from the GP. (9) Non patient specific dressings were used on pressure sores. (10) A non-patient specific mattress was used on his bed. (11) Visits by the placement officer and disability nurse failed to identify Mr Edward’s deteriorating condition. ”

    Source location

    John Keith Edwards · Prevention of Future Deaths report
    Page 2 · concerns

    Open source report

    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 absence of a resident-specific seizure policy did not indicate inadequate care because no seizure history was disclosed and general epilepsy procedures were followed.

    Verbatim wording from the response

    “3. There was no seizure policy supplied upon admission. Southwinds general policy as to epilepsy was followed. Upon admission there was no indication that Mr Edwards had had seizures. If there is a history of seizures then it was usual for a specific policy for that resident to accompany upon admission, which would then be followed. Mr Edwards was not prescribed any epilepsy medication to the knowledge of Southwinds.”

    Source location

    2018-0015-Response-Southwinds-Limited
    Page 2 · response
    Published 7 March 2018

    Open published response

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Classification: all classifications19 Sep 2013 – 7 Sep 2026 (Publication date)Recurring concern: Unreliable seizure care and management
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