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 Respondents Types
Matching reports sent to each recipient.
Practice Plus Group 2
HM Prison and Probation Service 1
NHS England 1
Pentonville Prison 1
Royal College of General Practitioners 1
Royal College of Physicians 1
Independent healthcare provider 2
Executive agency 1
Executive non-departmental public body 1
Health professional body 1
Prison or young offender institution 1
Classification: sudep Recurring concern: Unreliable seizure care and management
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.
2 Apr 2024 Andrew Ewin-Ripp · Prevention of Future Deaths report East London
View report summary
Concerns raised 3
Lack of guidance on contacting the secondary care team after recurrent seizures View source Lack of discharge guidance on maintaining medication compliance despite prolonged seizure freedom View source Lack of discharge guidance on notifying clinicians about recurrent seizures View source
This report raised 4 other concerns. They are not shown here because they do not form part of this recurring concern.
Responses linked to these concerns
Each statement is shown once, even when linked to more than one concern.
No linked response statements No respondent-stated action or position is linked to these concerns in the published data.
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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
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
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
Open source report
16 Jan 2024 Trevor Alan MONERVILLE · Prevention of Future Deaths report East Sussex
View report summary
Concerns raised 3
Lack of prison staff training in managing long-term health conditions on the wings View source Lack of individualized seizure care planning and monitoring View source Deficit in national policy for managing and supporting prisoners with epilepsy and seizures View source
This report raised 3 other concerns. They are not shown here because they do not form part of this recurring concern.
Responses linked to these concerns
Each statement is shown once, even when linked to more than one concern.
×
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
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
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
Open source report
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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
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
Open published response
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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
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
Open published response
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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
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
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
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
Open published response
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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
Open published response
18 Sep 2023 Amarjit SINGH · Prevention of Future Deaths report Inner North London
View report summary
Concerns raised 2
Lack of seizure-response training for prison staff View source Unavailability of guidance for prisoners responding to a cellmate’s fit View source
This report raised 3 other concerns. They are not shown here because they do not form part of this recurring concern.
Responses linked to these concerns
Each statement is shown once, even when linked to more than one concern.
×
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
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
Open source report
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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
Open published response
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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
Open published response
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Classification: sudep 7 Sep 2023 – 7 Sep 2026 (Publication date) Recurring concern: Unreliable seizure care and management
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