19 Mar 2026 Paul Robert Joseph NASH · Prevention of Future Deaths report Bedfordshire and Luton
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Concerns raised 3
Failure to convey information about critically depleted seizure medication to the GP View source Failure to prioritise prescriptions for same-day supply of critically depleted seizure medication View source Difficulties obtaining sufficient quantities of epilepsy medication for continuous access View source
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Paul Robert Joseph NASH · Prevention of Future Deaths report
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Report summary
Paul Robert Joseph NASH, who had epilepsy secondary to HSV encephalitis, was found deceased at home on 23 October 2025 after apparently suffering a seizure during the night. He had run out of Carbamazepine and missed three doses. The concerns included that the GP surgery did not appear to be told that he had completely run out of medication and did not prioritise the prescription for same-day collection, as well as wider difficulties for epilepsy patients in obtaining sufficient medication supplies.
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How this individual concern was interpreted PFD Monitor created a concise, searchable interpretation from the report wording shown below.
PFD Monitor interpretation Failure to convey information about critically depleted seizure medication to the GP
Wider context from the report “1. During the phone call with the Surgery on 21 October 2025, HEADWAY made it clear to the Surgery that the Deceased had run out of his Carbamazepine (seizure medication) completely and, although he had taken that morning's dose, if he did not receive more medication that day he would not have his evening dose or any other doses. Although HEADWAY was reassured that the GP would be notified that the Deceased had run out of his seizure medication, this fact did not appear to have been conveyed to the GP and the prescription was not prioritised to ensure he received it the same day.
” Source location Paul Robert Joseph NASH · Prevention of Future Deaths report
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How this individual concern was interpreted PFD Monitor created a concise, searchable interpretation from the report wording shown below.
PFD Monitor interpretation Failure to prioritise prescriptions for same-day supply of critically depleted seizure medication
Wider context from the report “1. During the phone call with the Surgery on 21 October 2025, HEADWAY made it clear to the Surgery that the Deceased had run out of his Carbamazepine (seizure medication) completely and, although he had taken that morning's dose, if he did not receive more medication that day he would not have his evening dose or any other doses. Although HEADWAY was reassured that the GP would be notified that the Deceased had run out of his seizure medication, this fact did not appear to have been conveyed to the GP and the prescription was not prioritised to ensure he received it the same day .
” Source location Paul Robert Joseph NASH · Prevention of Future Deaths report
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How this individual concern was interpreted PFD Monitor created a concise, searchable interpretation from the report wording shown below.
PFD Monitor interpretation Difficulties obtaining sufficient quantities of epilepsy medication for continuous access
Wider context from the report “2. The Deceased's Consultant Neurologist indicated that many epilepsy patients across the country currently experience difficulties in obtaining sufficient quantities of medication to ensure optimum seizure control i.e. it is difficult for them to obtain batch quantities to ensure they always have access to some in the event that they find they are running low or there are delays in the pharmacy processing a repeat prescription (apparently in some areas processing can take up to 10 days) .
” Source location Paul Robert Joseph NASH · Prevention of Future Deaths report
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PFD Monitor interpretation Introduce a formal escalation process prioritising requests for critical medicines, including same-day clinical review and urgent clinician alerts.
Verbatim wording from the response “Critical medication escalation process- the practice is introducing a formal process for identifying and escalating requests relating to critical medications including anti-epileptic medication. Where a patient reports that they have run out, or are about to run out of such medication, this will be treated as a priority medication safety issue and escalated promptly for same day review by an appropriate clinical or prescriber. Where such a task is sent to the Duty Clinician it will be flagged as urgent and an instant message will also” Source location Response from Sundon Medical Centre
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PFD Monitor interpretation Train reception and administrative staff to recognise critical medicines, manage split-strength requests, escalate concerns and verify communications.
Verbatim wording from the response “Staff training on critical medications and escalation. Reception and administrative staff have received and will continue to receive further training on:” Source location Response from Sundon Medical Centre
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PFD Monitor interpretation Review implementation of the medication-safety changes and monitor compliance with urgent-medicine, dosage-wording, written-request and escalation procedures.
Verbatim wording from the response “Audit and Review. The practice will undertake a review of these changes after implementation to ensure they are embedded and effective. This will include monitoring compliance with the new process for urgent critical medicines, checking the use of clear dosage wording for split-strength prescriptions and reviewing whether staff are following the written request and escalation process consistently.” Source location Response from Sundon Medical Centre
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PFD Monitor interpretation Clearly communicate the urgent status of critical-medication prescriptions to pharmacies to support prompt dispensing.
Verbatim wording from the response “Pharmacy communication for urgent critical medication. Where a patient has run out of critical medication and an urgent prescription is issued, the practice will ensure that the urgent nature of the request is clearly highlighted with the pharmacy to support prompt dispensing.” Source location Response from Sundon Medical Centre
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PFD Monitor interpretation Consider repeat dispensing, batch prescribing, or one-off reserve prescriptions for suitable patients at risk of running out of critical medication.
Verbatim wording from the response “Repeat dispensing / batch prescribing for suitable patients. For patients prescribed long term critical medication, the practice will consider whether repeat dispensing or batch prescribing with future dated repeat prescriptions for up to six months is appropriate, particularly where patients may have memory difficulties, cognitive impairment, or other vulnerabilities that place them at risk of running out of medication. This will be assessed on a case by case basis to ensure suitability and safety. Where patients have experienced difficulty obtaining medication on time the practice will consider prescribing a one-off extra medication prescription to provide patients with a month of their time critical medication in hand.” Source location Response from Sundon Medical Centre
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PFD Monitor interpretation Work with the pharmacy sector to improve awareness of emergency supply provisions and patients’ access to emergency medicines.
Verbatim wording from the response “The Department recognises that awareness of emergency supply provisions amongst both patients and pharmacy staff can be improved. The Department is committed to working with the pharmacy sector to improve awareness and ensure patients can access emergency supplies when necessary to prevent harm or death. We are currently in consultation with the sector representative body, Community Pharmacy England, on the 2026/27 Community Pharmacy Contractual Framework. As part of this consultation we will take into account learnings from Paul Nash’s death.” Source location 2026-0161 - Response from Department of Health and Social Care
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PFD Monitor interpretation Inform epilepsy patients about the Charlie Card emergency-supply self-advocacy tool.
Verbatim wording from the response “Informing Epilepsy Patients of the Charlie Card - this is a self advocacy tool designed to assist individuals with epilepsy who find themselves without their regular anti-seizure medications. It highlights the legal framework under the Human Medicines Regulations 2012, allowing patients to request an emergency supply of anti-seizure medications from any pharmacy without a prescription, provided certain conditions are met. The card serves as a reminder to pharmacists of their legal duties and aims to ensure that patients can access life- saving medications quickly and efficiently. The Charlie Card is available free through the charity shop of SUDEP Action and individuals can also download a copy.” Source location Response from Sundon Medical Centre
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PFD Monitor interpretation Provide clear patient information about prescription processing and pharmacy dispensing times through the website and reception.
Verbatim wording from the response “Clear patient information regarding repeat turnaround times The practice will continue to ensure that patients are clearly informed that repeat prescriptions require a two working days for surgery processing and that pharmacies require additional time for dispensing. This information will be displayed on the website and in reception to encourage timely ordering and reduce the risk of medication running out.” Source location Response from Sundon Medical Centre
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PFD Monitor interpretation NHS England and delegated Integrated Care Boards commission and performance-manage general practice, including addressing persistent performance concerns.
Verbatim wording from the response “General practice is commissioned and performance-managed by NHS England, with responsibility delegated to Integrated Care Boards, who are expected to work with practices to provide support and agree improvement plans where performance concerns arise. Where issues persist, commissioners can intervene and use contractual levers, including remedial action, to ensure safe and appropriate patient care.” Source location 2026-0161 - Response from Department of Health and Social Care
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PFD Monitor interpretation Existing urgent-supply arrangements, including pharmacist emergency supplies and NHS 111 referrals, provide routes to obtain urgently needed medicines.
Verbatim wording from the response “The Department recognises that delays in prescriptions being sent by GPs, such as in Paul Nash’s tragic case, can result in patients being left without vital medication. Provisions are in place to prevent patients being left in this situation. If a patient needs to access an urgent supply of their medicines, then there are a range of options available, which can be found at Emergency prescriptions - NHS.” Source location 2026-0161 - Response from Department of Health and Social Care
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PFD Monitor interpretation Existing regulations and NHS pharmacy terms require community pharmacies to dispense NHS medicines with reasonable promptness and notify patients of delays.
Verbatim wording from the response “The Department recognises that delays in pharmacies processing repeat prescriptions can result in patients unexpectedly running out of vital medicines. That is why all community pharmacies providing dispensing services for NHS patients in England are required to dispense medicines for patients on demand with reasonable promptness. This is set out in regulations and within the terms of service for all pharmacies on the NHS Pharmaceutical list.” Source location 2026-0161 - Response from Department of Health and Social Care
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Concerns raised 2
Lack of national pathway guidance for call handlers on assessing whether someone is breathing and whether CPR is required View source Lack of national pathway guidance for call handlers on assessing how cold the body is View source
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Drew John GREAVES-PIMBLETT · Prevention of Future Deaths report
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Report summary
Drew John Graves-Pimblett, aged 26 and with a history of epilepsy, was found unresponsive and not breathing at home on 22 March 2025. An ambulance was initially stood down after telephone triage, but police later commenced CPR and Drew was pronounced deceased. The inquest concluded that he died from Sudden Unexpected Death in Epilepsy (SUDEP), related to epilepsy and natural causes. The principal concern was that call handlers lacked sufficient guidance and did not ask probing questions about breathing, body temperature, turning Drew over, or stiffness before deciding that resuscitation would not be effective.
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How this individual concern was interpreted PFD Monitor created a concise, searchable interpretation from the report wording shown below.
PFD Monitor interpretation Lack of national pathway guidance for call handlers on assessing whether someone is breathing and whether CPR is required
Wider context from the report “Though a telephone triage is always challenging and subjective, there appears to be a gap in the national pathways for call handlers . Consideration as to further guidance and assistance to call handlers on probing questioning for fundamental aspects such as breathing and where and how to best show how cold the body is. If someone is not breathing to ask how they know and/or techniques such as head to the chest, where to take a pulse etc. for the call handler to make a more informed decision as to whether someone is breathing and if CPR is required . When a call is made to NWAS, often it is by someone not thinking straight and so specific questions on breathing and general presentation may be of assistance in assessing the call .
” Source location Drew John GREAVES-PIMBLETT · Prevention of Future Deaths report
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How this individual concern was interpreted PFD Monitor created a concise, searchable interpretation from the report wording shown below.
PFD Monitor interpretation Lack of national pathway guidance for call handlers on assessing how cold the body is
Wider context from the report “Though a telephone triage is always challenging and subjective, there appears to be a gap in the national pathways for call handlers . Consideration as to further guidance and assistance to call handlers on probing questioning for fundamental aspects such as breathing and where and how to best show how cold the body is . If someone is not breathing to ask how they know and/or techniques such as head to the chest, where to take a pulse etc. for the call handler to make a more informed decision as to whether someone is breathing and if CPR is required. When a call is made to NWAS, often it is by someone not thinking straight and so specific questions on breathing and general presentation may be of assistance in assessing the call.
” Source location Drew John GREAVES-PIMBLETT · Prevention of Future Deaths report
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PFD Monitor interpretation Provide CPR Toolkit Training to NHS Pathways health advisors, including the ‘No, No, Go’ approach and telephone-guided CPR initiation.
Verbatim wording from the response “Also, of relevance to this particular case, in terms of additional training regarding the assessment of consciousness and breathing, health advisors utilising NHS Pathways who have completed the core training are provided with ‘CPR Toolkit Training’. This encompasses what is called the ‘No, No, Go’ approach where, if the patient is not conscious or not breathing (either normally or at all), health advisors are trained to proceed immediately to the initiation of cardiopulmonary resuscitation (CPR) as presented by the system. This additional training seeks to ensure that health advisors are supported to proceed quickly to the required life supporting advice.” Source location Response from NHS England
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21 Oct 2025 Amber Grace Walker · Prevention of Future Deaths report Dorset
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Concerns raised 2
Failure to consistently discuss SUDEP with patients with epilepsy View source Lack of SUDEP training for doctors View source
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Amber Grace Walker · Prevention of Future Deaths report
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Report summary
Amber Grace Walker, who had epilepsy and uncontrolled nocturnal tonic-clonic seizures, was found deceased at home on 19 April 2023. A post-mortem examination identified Sudden Unexpected Death in Epilepsy (SUDEP) as the medical cause of death. The concerns were that SUDEP and Amber’s individual risk, including the implications of declining increased medication, were not discussed with her, and that SUDEP discussions and related training for doctors were not consistent or universal.
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How this individual concern was interpreted PFD Monitor created a concise, searchable interpretation from the report wording shown below.
PFD Monitor interpretation Failure to consistently discuss SUDEP with patients with epilepsy
Wider context from the report “i. Doctors can be reluctant to discuss SUDEP with patients and/or presume it is a discussion that has been had at previous appointments(s) with colleagues that does not need repeating. There are tools, such as the SUDEP Action-produced “SUDEP Checklist”, that can facilitate such a discussion, but they are not used universally. The SUDEP Checklist can be used by any medical practitioner who may come into contact with a patient with epilepsy. Discussions about SUDEP ensure that patients are aware of the general risks of SUDEP, the risks that are specific to the patient and the measures that can be taken to mitigate the risk.
” Source location Amber Grace Walker · Prevention of Future Deaths report
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How this individual concern was interpreted PFD Monitor created a concise, searchable interpretation from the report wording shown below.
PFD Monitor interpretation Lack of SUDEP training for doctors
Wider context from the report “ii. SUDEP is not covered in the medical training of doctors , despite is being the leading cause of death in patients with a diagnosis of epilepsy. It is not only neurologists that will encounter patients with epilepsy where a discussion regarding SUDEP may be required , as demonstrated by Amber’s experience.
” Source location Amber Grace Walker · Prevention of Future Deaths report
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PFD Monitor interpretation Medical schools, royal colleges and the GMC determine and oversee medical education curricula and standards, rather than the department.
Verbatim wording from the response “In relation to the education and training of doctors, individual medical schools set their own undergraduate medical curriculum. These have to meet the standards set by the General Medical Council (GMC), which monitors and checks to make sure that the standards are maintained.” Source location Response from Department of Health and Social Care
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24 Jan 2025 Charlie Marriage · Prevention of Future Deaths report Inner South London
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Concerns raised 6
Failure to maintain medical oversight of medication-dependent patients until appropriately medicated View source Failure to recognise and communicate medication-related crisis vulnerability in medical records View source Failure to provide appropriately urgent clinical support and safety-netting for medication-related crisis risk View source
Failure to ensure medication-dependent patients understand medication-related death risks and plan emergency action View source Failure to account for unreliable local pharmacy availability of urgently needed medication View source Provision of generic safety-netting advice to patients at risk of sudden medication-related crisis View source See 3 more concerns
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Charlie Marriage · Prevention of Future Deaths report
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Report summary
Charlie Marriage, who had epilepsy controlled with Fycompa, was unable to obtain his repeat medication after being told to self-isolate for Covid and encountering difficulties with his GP practice, pharmacy and 111. He suffered a fatal seizure at home after going without medication. The report identified concerns about whether patients with medication-dependent, “cliff-edge conditions” are recognised, prioritised and given appropriate safety-netting and access to emergency supplies.
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How this individual concern was interpreted PFD Monitor created a concise, searchable interpretation from the report wording shown below.
PFD Monitor interpretation Failure to maintain medical oversight of medication-dependent patients until appropriately medicated
Wider context from the report “(1) There are cohorts of patients who are medication dependant. For some their underlying condition is such that absent this medication they are at significant risk of a sudden crisis, and potentially death e.g. SUDEP, or Diabetic Ketoacidosis etc. These were described at the inquest as “cliff-edge conditions”.
(2) It is not apparent that these patients are currently identified within the health system as being at risk of a sudden crisis and death (absent their medication) so as to manage the following concerns giving rise to a risk of future deaths:
(a) that such patients may not be fully aware of the risks of death associated with not being medicated and therefore may (i) not fully understand the importance of avoiding the risk that this scenario arises, and (ii) not have planned the likely best course of action in the event that it does (e.g. to go to A&E, or to approach an identified pharmacy for an emergency supply);
(b) that the potential urgency and level of danger is not quickly identified and understood in the scenario where they seek medical advice and/or medication (i.e. that their potential vulnerability is not well recognised and communicated on/within the medical records accessed by those in the health sector, such that patients are not supported with appropriate urgency or safety-netting advice);
(c) that it is not recognised that sending to them to a pharmacy may not reliably mitigate their risks quickly where it is unlikely the medication can be expected to be in stock (i.e. the risk that it may not be identified that for some patients their medication is not likely easily available on an ad hoc local basis); and
(d) that they are given generic safety-netting/worsening advice, whereas such patients may not present with any developing or new before suffering a sudden crisis and therefore remain at significant risk without medical oversight until appropriately medicated .
” Source location Charlie Marriage · Prevention of Future Deaths report
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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 and communicate medication-related crisis vulnerability in medical records
Wider context from the report “(1) There are cohorts of patients who are medication dependant. For some their underlying condition is such that absent this medication they are at significant risk of a sudden crisis, and potentially death e.g. SUDEP, or Diabetic Ketoacidosis etc. These were described at the inquest as “cliff-edge conditions”.
(2) It is not apparent that these patients are currently identified within the health system as being at risk of a sudden crisis and death (absent their medication) so as to manage the following concerns giving rise to a risk of future deaths:
(a) that such patients may not be fully aware of the risks of death associated with not being medicated and therefore may (i) not fully understand the importance of avoiding the risk that this scenario arises, and (ii) not have planned the likely best course of action in the event that it does (e.g. to go to A&E, or to approach an identified pharmacy for an emergency supply);
(b) that the potential urgency and level of danger is not quickly identified and understood in the scenario where they seek medical advice and/or medication (i.e. that their potential vulnerability is not well recognised and communicated on/within the medical records accessed by those in the health sector , such that patients are not supported with appropriate urgency or safety-netting advice);
(c) that it is not recognised that sending to them to a pharmacy may not reliably mitigate their risks quickly where it is unlikely the medication can be expected to be in stock (i.e. the risk that it may not be identified that for some patients their medication is not likely easily available on an ad hoc local basis); and
(d) that they are given generic safety-netting/worsening advice, whereas such patients may not present with any developing or new before suffering a sudden crisis and therefore remain at significant risk without medical oversight until appropriately medicated.
” Source location Charlie Marriage · Prevention of Future Deaths report
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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 appropriately urgent clinical support and safety-netting for medication-related crisis risk
Wider context from the report “(1) There are cohorts of patients who are medication dependant. For some their underlying condition is such that absent this medication they are at significant risk of a sudden crisis, and potentially death e.g. SUDEP, or Diabetic Ketoacidosis etc. These were described at the inquest as “cliff-edge conditions”.
(2) It is not apparent that these patients are currently identified within the health system as being at risk of a sudden crisis and death (absent their medication) so as to manage the following concerns giving rise to a risk of future deaths:
(a) that such patients may not be fully aware of the risks of death associated with not being medicated and therefore may (i) not fully understand the importance of avoiding the risk that this scenario arises, and (ii) not have planned the likely best course of action in the event that it does (e.g. to go to A&E, or to approach an identified pharmacy for an emergency supply);
(b) that the potential urgency and level of danger is not quickly identified and understood in the scenario where they seek medical advice and/or medication (i.e. that their potential vulnerability is not well recognised and communicated on/within the medical records accessed by those in the health sector, such that patients are not supported with appropriate urgency or safety-netting advice );
(c) that it is not recognised that sending to them to a pharmacy may not reliably mitigate their risks quickly where it is unlikely the medication can be expected to be in stock (i.e. the risk that it may not be identified that for some patients their medication is not likely easily available on an ad hoc local basis); and
(d) that they are given generic safety-netting/worsening advice, whereas such patients may not present with any developing or new before suffering a sudden crisis and therefore remain at significant risk without medical oversight until appropriately medicated.
” Source location Charlie Marriage · Prevention of Future Deaths report
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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 medication-dependent patients understand medication-related death risks and plan emergency action
Wider context from the report “(1) There are cohorts of patients who are medication dependant. For some their underlying condition is such that absent this medication they are at significant risk of a sudden crisis, and potentially death e.g. SUDEP, or Diabetic Ketoacidosis etc. These were described at the inquest as “cliff-edge conditions”.
(2) It is not apparent that these patients are currently identified within the health system as being at risk of a sudden crisis and death (absent their medication) so as to manage the following concerns giving rise to a risk of future deaths:
(a) that such patients may not be fully aware of the risks of death associated with not being medicated and therefore may (i) not fully understand the importance of avoiding the risk that this scenario arises, and (ii) not have planned the likely best course of action in the event that it does (e.g. to go to A&E, or to approach an identified pharmacy for an emergency supply);
(b) that the potential urgency and level of danger is not quickly identified and understood in the scenario where they seek medical advice and/or medication (i.e. that their potential vulnerability is not well recognised and communicated on/within the medical records accessed by those in the health sector, such that patients are not supported with appropriate urgency or safety-netting advice);
(c) that it is not recognised that sending to them to a pharmacy may not reliably mitigate their risks quickly where it is unlikely the medication can be expected to be in stock (i.e. the risk that it may not be identified that for some patients their medication is not likely easily available on an ad hoc local basis); and
(d) that they are given generic safety-netting/worsening advice, whereas such patients may not present with any developing or new before suffering a sudden crisis and therefore remain at significant risk without medical oversight until appropriately medicated.
” Source location Charlie Marriage · Prevention of Future Deaths report
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How this individual concern was interpreted PFD Monitor created a concise, searchable interpretation from the report wording shown below.
PFD Monitor interpretation Failure to account for unreliable local pharmacy availability of urgently needed medication
Wider context from the report “(1) There are cohorts of patients who are medication dependant. For some their underlying condition is such that absent this medication they are at significant risk of a sudden crisis, and potentially death e.g. SUDEP, or Diabetic Ketoacidosis etc. These were described at the inquest as “cliff-edge conditions”.
(2) It is not apparent that these patients are currently identified within the health system as being at risk of a sudden crisis and death (absent their medication) so as to manage the following concerns giving rise to a risk of future deaths:
(a) that such patients may not be fully aware of the risks of death associated with not being medicated and therefore may (i) not fully understand the importance of avoiding the risk that this scenario arises, and (ii) not have planned the likely best course of action in the event that it does (e.g. to go to A&E, or to approach an identified pharmacy for an emergency supply);
(b) that the potential urgency and level of danger is not quickly identified and understood in the scenario where they seek medical advice and/or medication (i.e. that their potential vulnerability is not well recognised and communicated on/within the medical records accessed by those in the health sector, such that patients are not supported with appropriate urgency or safety-netting advice);
(c) that it is not recognised that sending to them to a pharmacy may not reliably mitigate their risks quickly where it is unlikely the medication can be expected to be in stock (i.e. the risk that it may not be identified that for some patients their medication is not likely easily available on an ad hoc local basis ); and
(d) that they are given generic safety-netting/worsening advice, whereas such patients may not present with any developing or new before suffering a sudden crisis and therefore remain at significant risk without medical oversight until appropriately medicated.
” Source location Charlie Marriage · Prevention of Future Deaths report
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How this individual concern was interpreted PFD Monitor created a concise, searchable interpretation from the report wording shown below.
PFD Monitor interpretation Provision of generic safety-netting advice to patients at risk of sudden medication-related crisis
Wider context from the report “(1) There are cohorts of patients who are medication dependant. For some their underlying condition is such that absent this medication they are at significant risk of a sudden crisis, and potentially death e.g. SUDEP, or Diabetic Ketoacidosis etc. These were described at the inquest as “cliff-edge conditions”.
(2) It is not apparent that these patients are currently identified within the health system as being at risk of a sudden crisis and death (absent their medication) so as to manage the following concerns giving rise to a risk of future deaths:
(a) that such patients may not be fully aware of the risks of death associated with not being medicated and therefore may (i) not fully understand the importance of avoiding the risk that this scenario arises, and (ii) not have planned the likely best course of action in the event that it does (e.g. to go to A&E, or to approach an identified pharmacy for an emergency supply);
(b) that the potential urgency and level of danger is not quickly identified and understood in the scenario where they seek medical advice and/or medication (i.e. that their potential vulnerability is not well recognised and communicated on/within the medical records accessed by those in the health sector, such that patients are not supported with appropriate urgency or safety-netting advice);
(c) that it is not recognised that sending to them to a pharmacy may not reliably mitigate their risks quickly where it is unlikely the medication can be expected to be in stock (i.e. the risk that it may not be identified that for some patients their medication is not likely easily available on an ad hoc local basis); and
(d) that they are given generic safety-netting/worsening advice , whereas such patients may not present with any developing or new before suffering a sudden crisis and therefore remain at significant risk without medical oversight until appropriately medicated.
” Source location Charlie Marriage · Prevention of Future Deaths report
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How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Commission and launch the Pharmacy First service to support timely access to urgently required medicines.
Verbatim wording from the response “This guidance is further supported by the service specification for the NHS Pharmacy First service that was launched on 31 January 2024 (NHS England » Launch of NHS Pharmacy First advanced service). In cases where medication that is urgently required is not in stock at the pharmacy, the service specification states that, with the agreement of the patient, the pharmacist should identify another pharmacy that provides the service and forward the electronic referral to them (see 4.19). If the patient is unable to get to the premises, the pharmacist must ensure that the patient is able to obtain the supply in a timely manner by discussing all reasonable options for accessing their medicines (see 4.20).” Source location Response from NHS England
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How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Investigate technology to track medication stocks across community pharmacies and improve management of high-impact national shortages.
Verbatim wording from the response “Current technology does not allow the tracking of stocks of medication across community pharmacies. This is being investigated as a strategy to better manage high-impact national shortages of medication.” Source location Response from NHS England
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PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Deliver the Medicines Safety Improvement Programme to improve access to time-critical medicines for people with cliff-edge conditions, including epilepsy, and incorporate learning from Charlie’s death.
Verbatim wording from the response “NHS England has instigated the Medicines Safety Improvement Programme which has been working to improve access to “Time Critical Medicines”. The focus of attention is to identify people with “cliff-edge conditions” and then to ensure they have the time critical medicines they need to prevent rapid deterioration. The programme started in 2024 and has identified a small number of “cliff-edge conditions” that may benefit from improved processes. Epilepsy is one of the conditions identified, and a key ambition of the programme is to improve care for people with epilepsy. This programme is being delivered in partnership with Epilepsy Action and Parkinson’s UK (alongside other charities) and is planned to run until March 2027. It will take into account the learning from Charlie’s death.” Source location Response from NHS England
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How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation It is not safely possible to differentiate medication urgency because of variable uses, brand names and alternative condition descriptions.
Verbatim wording from the response “All medications are treated with the same high priority. Due to the variable use of medications for different presentations, the use of brand names and alternative descriptions for conditions, it is not safely possible to differentiate between different levels of urgency.” Source location Response from NHS England
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 Current technology cannot track medication stocks across community pharmacies, limiting the ability to implement such tracking nationally.
Verbatim wording from the response “Current technology does not allow the tracking of stocks of medication across community pharmacies. This is being investigated as a strategy to better manage high-impact national shortages of medication.” Source location Response from NHS England
Open published response
14 Oct 2024 Mia Louise Gauci-Lamport · Prevention of Future Deaths report Surrey
View report summary
Concerns raised 11
Lack of specialist NHS paediatric neuro-consultant oversight View source Failure to maintain comprehensive, understandable, accurate and contemporaneous medical records View source Failure to undertake regular Paediatric Early Warning Score assessments View source
Deficiencies in ongoing staff training View source Deficient clinical governance of management and investigation View source Failure to conduct regular audits of clinical practice View source Failure to provide sufficiently frequent direct night-time visual observations View source Failure to ensure robust procedures are in place View source Delays in fulfilling Duty of Candour obligations View source Failure to undertake regular multidisciplinary clinical reviews View source Lack of regular independent consultant oversight and coordination of investigations and multidisciplinary management View source See 8 more concerns
Responses linked to these concerns
Each statement is shown once, even when linked to more than one concern.
Actions described in response An action is something a respondent says it has done, is doing, or plans to do in response to the concern raised. 16
Action
Strengthen NHS integration, referral pathways, and coordination with primary, secondary, and tertiary services for timely specialist care.
Stated by The Children's TrustStated in progressThe respondent said that this action was in progress when they made their response on 14 October 2024. View source
Action
Reduce reliance on private consultants by integrating ongoing specialist care, including epilepsy management, within NHS services.
Stated by The Children's TrustStated in progressThe respondent said that this action was in progress when they made their response on 14 October 2024. View source
Action
Undertake a comprehensive inspection of the service, including assessment of overnight observations, care planning, clinical monitoring and governance.
Stated by Care Quality CommissionStated completedThe respondent said that this action was complete when they made their response on 14 October 2024. View source
Action
Audit medical records regularly against NHS standards and address ongoing health-record integration issues with system partners.
Stated by The Children's TrustStated completedThe respondent said that this action was complete when they made their response on 14 October 2024. View source
Action
Request monthly updates on monitoring-frequency and Paediatric Early Warning System audits to assess ongoing implementation and identify practice gaps.
Stated by Care Quality CommissionStated completedThe respondent said that this action was complete when they made their response on 14 October 2024. View source
Action
Maintain clear, individualised, regularly updated care plans aligned with Paediatric Early Warning Scores and audit their implementation.
Stated by The Children's TrustStated completedThe respondent said that this action was complete when they made their response on 14 October 2024. View source
Action
Conduct overnight monitoring-practice audits and monthly quality walks to verify compliance with observation policies and care plans.
Stated by The Children's TrustStated completedThe respondent said that this action was complete when they made their response on 14 October 2024. View source
Action
Work with Tadworth Children’s Trust and stakeholders through Rapid Quality Review meetings to review care quality, identify risks, and formulate improvement plans.
Stated by NHS EnglandStated in progressThe respondent said that this action was in progress when they made their response on 14 October 2024. View source
Action
Refine the clinical governance structure and strengthen leadership oversight of care practices, protocols, and improvement implementation.
Stated by The Children's TrustStated in progressThe respondent said that this action was in progress when they made their response on 14 October 2024. View source
Action
Complete the thematic review of serious incidents and near misses and embed resulting quality-improvement workstreams in governance arrangements.
Stated by The Children's TrustStatus at responseThe respondent said that this action was partly complete when they made their response on 14 October 2024. View source
Action
Conduct regular audits of care quality, care-plan adherence, and monitoring effectiveness under internal and external scrutiny.
Stated by The Children's TrustStated completedThe respondent said that this action was complete when they made their response on 14 October 2024. View source
Action
Implement and embed a shift handover protocol communicating required supervision and observations and recording the preceding shift’s clinical observations.
Stated by The Children's TrustStated completedThe respondent said that this action was complete when they made their response on 14 October 2024. View source
Action
Align frequency-of-monitoring policy and clinical guidelines with national best practice through wider consultation and critique.
Stated by The Children's TrustStated in progressThe respondent said that this action was in progress when they made their response on 14 October 2024. View source
Action
Review and audit video surveillance, wearable sensors, and other monitoring tools to ensure appropriate use alongside direct checks.
Stated by The Children's TrustStated completedThe respondent said that this action was complete when they made their response on 14 October 2024. View source
Action
Consider duty-of-candour review findings alongside manager-regulation consultation findings while developing healthcare candour policy.
Stated by Department of Health and Social CareStated plannedThe respondent said that this action was planned when they made their response on 14 October 2024. View source
Action
Review and improve the internal multidisciplinary care model across medical, nursing, care, and therapy services alongside broader NHS integration.
Stated by The Children's TrustStated in progressThe respondent said that this action was in progress when they made their response on 14 October 2024. View source See 13 more actions
×
AI-generated summary
Mia Louise Gauci-Lamport · Prevention of Future Deaths report
This summary was generated using AI from the published report. Please read the original report for the complete account.
Report summary
Mia Louise Gauci-Lamport, who had treatment-resistant epilepsy and required full-time residential care, was found cyanotic and unresponsive at around 06.32 hours on 11 September 2023 after not being visually checked when a carer entered her room. Resuscitation was unsuccessful. The report raised concerns about inadequate night-time monitoring, incomplete medical records and insufficient clinical oversight and governance.
Read the report on judiciary.uk
× Source evidence
How this individual concern was interpreted PFD Monitor created a concise, searchable interpretation from the report wording shown below.
PFD Monitor interpretation Lack of specialist NHS paediatric neuro-consultant oversight
Wider context from the report “2. Medical Care provided to Mia
Mia’s medical records at TCT were neither comprehensive nor easy to understand and did not conform to the expected standard in NHS general or hospital practice to ensure accurate and contemporaneous medical care was being reviewed and documented.
Mia was a ‘looked after’ child with complex and challenging health needs and could not contribute or make decisions for herself. The independent investigator found regular PEWS (Paediatric Early Warning Scores) assessments were not undertaken to ensure Mia’s well-being despite it being within her care plan. There was no documented evidence that a multidisciplinary clinical review was regularly, if at all, undertaken to ensure Mia’s risk was regularly assessed, appropriate monitoring was in place, and care provision was meeting her needs.
Mia was reviewed by a ‘privately-funded’ consultant employed by but working independently of Great Ormond Street Children’s Hospital as and when requested by the medical staff at TCT. The consultant had no terms of reference and did not take responsibility for Mia’s ongoing care and was consulted only in relation to adjustments in her medication for seizure control. Due to financial constraints the consultant’s service level agreement was temporarily terminated and not available from April to October 2023.
In this context, Mia was not under a specialist NHS paediatric neuro-consultant to ensure her ongoing medical needs conformed to expected practice nationally and for an independent consultant outside of TCT to have regular oversight and co-ordinate investigations and any further multi-disciplinary management she may need given this progressive life-limiting condition.
” Source location Mia Louise Gauci-Lamport · 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 Failure to maintain comprehensive, understandable, accurate and contemporaneous medical records
Wider context from the report “2. Medical Care provided to Mia
Mia’s medical records at TCT were neither comprehensive nor easy to understand and did not conform to the expected standard in NHS general or hospital practice to ensure accurate and contemporaneous medical care was being reviewed and documented .
Mia was a ‘looked after’ child with complex and challenging health needs and could not contribute or make decisions for herself. The independent investigator found regular PEWS (Paediatric Early Warning Scores) assessments were not undertaken to ensure Mia’s well-being despite it being within her care plan. There was no documented evidence that a multidisciplinary clinical review was regularly, if at all, undertaken to ensure Mia’s risk was regularly assessed, appropriate monitoring was in place, and care provision was meeting her needs.
Mia was reviewed by a ‘privately-funded’ consultant employed by but working independently of Great Ormond Street Children’s Hospital as and when requested by the medical staff at TCT. The consultant had no terms of reference and did not take responsibility for Mia’s ongoing care and was consulted only in relation to adjustments in her medication for seizure control. Due to financial constraints the consultant’s service level agreement was temporarily terminated and not available from April to October 2023.
In this context, Mia was not under a specialist NHS paediatric neuro-consultant to ensure her ongoing medical needs conformed to expected practice nationally and for an independent consultant outside of TCT to have regular oversight and co-ordinate investigations and any further multi-disciplinary management she may need given this progressive life-limiting condition.
” Source location Mia Louise Gauci-Lamport · 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 Failure to undertake regular Paediatric Early Warning Score assessments
Wider context from the report “2. Medical Care provided to Mia
Mia’s medical records at TCT were neither comprehensive nor easy to understand and did not conform to the expected standard in NHS general or hospital practice to ensure accurate and contemporaneous medical care was being reviewed and documented.
Mia was a ‘looked after’ child with complex and challenging health needs and could not contribute or make decisions for herself. The independent investigator found regular PEWS (Paediatric Early Warning Scores) assessments were not undertaken to ensure Mia’s well-being despite it being within her care plan. There was no documented evidence that a multidisciplinary clinical review was regularly, if at all, undertaken to ensure Mia’s risk was regularly assessed, appropriate monitoring was in place, and care provision was meeting her needs.
Mia was reviewed by a ‘privately-funded’ consultant employed by but working independently of Great Ormond Street Children’s Hospital as and when requested by the medical staff at TCT. The consultant had no terms of reference and did not take responsibility for Mia’s ongoing care and was consulted only in relation to adjustments in her medication for seizure control. Due to financial constraints the consultant’s service level agreement was temporarily terminated and not available from April to October 2023.
In this context, Mia was not under a specialist NHS paediatric neuro-consultant to ensure her ongoing medical needs conformed to expected practice nationally and for an independent consultant outside of TCT to have regular oversight and co-ordinate investigations and any further multi-disciplinary management she may need given this progressive life-limiting condition.
” Source location Mia Louise Gauci-Lamport · 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 Deficiencies in ongoing staff training
Wider context from the report “3. Senior management, Children’s Trust, Tadworth
The lack of a robust and adhered to care plan for night observations for Mia mirrors the same concern in the PFD report I issued following the Inquest touching on the death of Connor Wellsted at TCT in 2022.
The Independent investigator commissioned by TCT highlighted ongoing clinical governance limitations including the initial management and investigation of Mia’s death, delay in fulfilling the Duty of Candour’ obligations, ongoing staff training , ensuring robust procedures were in place alongside regular audits of clinical practice. These are the same issues highlighted in the PFD report I issued touching on the death of Connor Wellsted two years previously.
” Source location Mia Louise Gauci-Lamport · 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 Deficient clinical governance of management and investigation
Wider context from the report “3. Senior management, Children’s Trust, Tadworth
The lack of a robust and adhered to care plan for night observations for Mia mirrors the same concern in the PFD report I issued following the Inquest touching on the death of Connor Wellsted at TCT in 2022.
The Independent investigator commissioned by TCT highlighted ongoing clinical governance limitations including the initial management and investigation of Mia’s death , delay in fulfilling the Duty of Candour’ obligations, ongoing staff training, ensuring robust procedures were in place alongside regular audits of clinical practice. These are the same issues highlighted in the PFD report I issued touching on the death of Connor Wellsted two years previously.
” Source location Mia Louise Gauci-Lamport · 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 Failure to conduct regular audits of clinical practice
Wider context from the report “3. Senior management, Children’s Trust, Tadworth
The lack of a robust and adhered to care plan for night observations for Mia mirrors the same concern in the PFD report I issued following the Inquest touching on the death of Connor Wellsted at TCT in 2022.
The Independent investigator commissioned by TCT highlighted ongoing clinical governance limitations including the initial management and investigation of Mia’s death, delay in fulfilling the Duty of Candour’ obligations, ongoing staff training, ensuring robust procedures were in place alongside regular audits of clinical practice . These are the same issues highlighted in the PFD report I issued touching on the death of Connor Wellsted two years previously.
” Source location Mia Louise Gauci-Lamport · 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 Failure to provide sufficiently frequent direct night-time visual observations
Wider context from the report “1. Lack of appropriate monitoring of Mia during the night :
Mia’s underlying illness caused seizures which were multifocal, complex and variable from tonic-clonic, myoclonic to cluster and absence seizures. Her care plan stipulated that carers should enter her room every 15 minutes to undertake visual observations throughout the night to ensure Mia was in a safe position, was breathing and not at risk of asphyxiation. However, this did not take place as frequently as specified . Moreover, it was common practice amongst some carers to review images from a video monitor placed over Mia’s cot rather than direct visualisation despite it being recognised that the monitor was insufficiently sensitive to reassure the carer that Mia was breathing, seizure free and safe from asphyxiation .
” Source location Mia Louise Gauci-Lamport · Prevention of Future Deaths report
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 robust procedures are in place
Wider context from the report “3. Senior management, Children’s Trust, Tadworth
The lack of a robust and adhered to care plan for night observations for Mia mirrors the same concern in the PFD report I issued following the Inquest touching on the death of Connor Wellsted at TCT in 2022.
The Independent investigator commissioned by TCT highlighted ongoing clinical governance limitations including the initial management and investigation of Mia’s death, delay in fulfilling the Duty of Candour’ obligations, ongoing staff training, ensuring robust procedures were in place alongside regular audits of clinical practice. These are the same issues highlighted in the PFD report I issued touching on the death of Connor Wellsted two years previously.
” Source location Mia Louise Gauci-Lamport · 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 Delays in fulfilling Duty of Candour obligations
Wider context from the report “3. Senior management, Children’s Trust, Tadworth
The lack of a robust and adhered to care plan for night observations for Mia mirrors the same concern in the PFD report I issued following the Inquest touching on the death of Connor Wellsted at TCT in 2022.
The Independent investigator commissioned by TCT highlighted ongoing clinical governance limitations including the initial management and investigation of Mia’s death, delay in fulfilling the Duty of Candour’ obligations , ongoing staff training, ensuring robust procedures were in place alongside regular audits of clinical practice. These are the same issues highlighted in the PFD report I issued touching on the death of Connor Wellsted two years previously.
” Source location Mia Louise Gauci-Lamport · 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 Failure to undertake regular multidisciplinary clinical reviews
Wider context from the report “2. Medical Care provided to Mia
Mia’s medical records at TCT were neither comprehensive nor easy to understand and did not conform to the expected standard in NHS general or hospital practice to ensure accurate and contemporaneous medical care was being reviewed and documented.
Mia was a ‘looked after’ child with complex and challenging health needs and could not contribute or make decisions for herself. The independent investigator found regular PEWS (Paediatric Early Warning Scores) assessments were not undertaken to ensure Mia’s well-being despite it being within her care plan. There was no documented evidence that a multidisciplinary clinical review was regularly, if at all, undertaken to ensure Mia’s risk was regularly assessed, appropriate monitoring was in place, and care provision was meeting her needs .
Mia was reviewed by a ‘privately-funded’ consultant employed by but working independently of Great Ormond Street Children’s Hospital as and when requested by the medical staff at TCT. The consultant had no terms of reference and did not take responsibility for Mia’s ongoing care and was consulted only in relation to adjustments in her medication for seizure control. Due to financial constraints the consultant’s service level agreement was temporarily terminated and not available from April to October 2023.
In this context, Mia was not under a specialist NHS paediatric neuro-consultant to ensure her ongoing medical needs conformed to expected practice nationally and for an independent consultant outside of TCT to have regular oversight and co-ordinate investigations and any further multi-disciplinary management she may need given this progressive life-limiting condition.
” Source location Mia Louise Gauci-Lamport · 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 regular independent consultant oversight and coordination of investigations and multidisciplinary management
Wider context from the report “2. Medical Care provided to Mia
Mia’s medical records at TCT were neither comprehensive nor easy to understand and did not conform to the expected standard in NHS general or hospital practice to ensure accurate and contemporaneous medical care was being reviewed and documented.
Mia was a ‘looked after’ child with complex and challenging health needs and could not contribute or make decisions for herself. The independent investigator found regular PEWS (Paediatric Early Warning Scores) assessments were not undertaken to ensure Mia’s well-being despite it being within her care plan. There was no documented evidence that a multidisciplinary clinical review was regularly, if at all, undertaken to ensure Mia’s risk was regularly assessed, appropriate monitoring was in place, and care provision was meeting her needs.
Mia was reviewed by a ‘privately-funded’ consultant employed by but working independently of Great Ormond Street Children’s Hospital as and when requested by the medical staff at TCT. The consultant had no terms of reference and did not take responsibility for Mia’s ongoing care and was consulted only in relation to adjustments in her medication for seizure control. Due to financial constraints the consultant’s service level agreement was temporarily terminated and not available from April to October 2023.
In this context, Mia was not under a specialist NHS paediatric neuro-consultant to ensure her ongoing medical needs conformed to expected practice nationally and for an independent consultant outside of TCT to have regular oversight and co-ordinate investigations and any further multi-disciplinary management she may need given this progressive life-limiting condition.
” Source location Mia Louise Gauci-Lamport · Prevention of Future Deaths report
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 Strengthen NHS integration, referral pathways, and coordination with primary, secondary, and tertiary services for timely specialist care.
Verbatim wording from the response “○ Enhanced NHS Integration: The Children’s Trust is actively working with primary, secondary and tertiary NHS services to ensure that children in our care receive timely and regular access to care. We are working with the wider health and social care system to formalise clearer referral pathways and improving coordination with NHS specialists to ensure that all clinical needs are addressed promptly. This work has commenced and continues through existing NHS governance frameworks.” Source location Response from The Children's Trust
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 Reduce reliance on private consultants by integrating ongoing specialist care, including epilepsy management, within NHS services.
Verbatim wording from the response “○ Reducing Reliance on Private Consultants: We are actively reducing our reliance on private consultants for ongoing care, particularly in areas such as epilepsy management, and are working to ensure that children receive care that is fully integrated within the NHS. We have required wider health and social care system support to ensure equitable access for the children and young people in our care and this work continues.” Source location Response from The Children's Trust
Open published response
×
Source evidence
How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Undertake a comprehensive inspection of the service, including assessment of overnight observations, care planning, clinical monitoring and governance.
Verbatim wording from the response “In December 2023 CQC had received key information and started to plan for an inspection in February. On February 20th to 21st 2024 the CQC undertook a comprehensive inspection of TCT as part of our regulatory response to the notification of Mia’s sad death. The inspection looked at all five key questions of whether TCT is Safe, Effective, Caring, Responsive and Well-led. (Please see attached PDF). CQC do not provide ratings for children’s homes that are registered with Ofsted, as per our policy.” Source location Response from CQC
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 medical records regularly against NHS standards and address ongoing health-record integration issues with system partners.
Verbatim wording from the response “○ Medical records: We continually audit our medical records in line with NHS standards and achieve high compliance against these. As an organisation sitting outside the NHS, health record integration is complex and an ongoing area of focus for us with our wider health and social care system partners. Medical record audits continue regularly to ensure our ongoing compliance in this area.” Source location Response from The Children's Trust
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 Request monthly updates on monitoring-frequency and Paediatric Early Warning System audits to assess ongoing implementation and identify practice gaps.
Verbatim wording from the response “In July 2024 following the coroner’s inquest and information from the independent investigator report, CQC requested monthly updates from TCT regarding the providers audits of frequency of monitoring of children and their Paediatric Early Warning System (PEWS). The audits and actions taken, provided CQC with assurance the leadership team continued to take positive action to address any gaps in practice that the audits identified.” Source location Response from CQC
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 Maintain clear, individualised, regularly updated care plans aligned with Paediatric Early Warning Scores and audit their implementation.
Verbatim wording from the response “○ Individualised Care Plans: We have made certain that care plans are clear, individualised, and regularly updated based on the child’s current needs and challenges and aligned to the PEWS (Paediatric Early Warning Scores). These updates ensure that the monitoring of children is consistent, personalised, and aligned with the latest clinical guidelines. This initial work is complete and is now continuously reviewed and audited in line with our policy and best practice.” Source location Response from The Children's Trust
Open published response
×
Source evidence
How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Conduct overnight monitoring-practice audits and monthly quality walks to verify compliance with observation policies and care plans.
Verbatim wording from the response “○ Frequency of Monitoring and PEWS Practice Audits: We have implemented new Frequency of Monitoring Practice audits overnight, conducted by Clinical Site Managers. This ensures continued compliance with the monitoring and observations policies. These audits are complemented by monthly quality walks to ensure the consistent implementation of care plans and protocols. This additional assurance mechanism is built into roles and responsibilities and findings from these audits feed into the broader clinical governance framework.” Source location Response from The Children's Trust
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 Work with Tadworth Children’s Trust and stakeholders through Rapid Quality Review meetings to review care quality, identify risks, and formulate improvement plans.
Verbatim wording from the response “Even though NHS England had no direct or commissioning oversight of Mia’s care, I should like to provide you and Mia’s family with some assurance that our regional Specialised Commissioning team has been working with TCT, alongside other stakeholders, to review the quality of care being provided. This has taken the form of Rapid Quality Review (RQR) meetings in accordance with the National Quality Boards guidance on risk response and escalation in ICSs where concerns are raised about a” Source location Response from NHS England
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 Refine the clinical governance structure and strengthen leadership oversight of care practices, protocols, and improvement implementation.
Verbatim wording from the response “The Children’s Trust is committed to maintaining and improving robust governance and oversight systems. We have initiated a series of improvements:” Source location Response from The Children's Trust
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 the thematic review of serious incidents and near misses and embed resulting quality-improvement workstreams in governance arrangements.
Verbatim wording from the response “• Thematic review: We have undertaken a thematic review of all serious incidents and near misses within a specific timeframe. The themes and trends identified through this review have resulted in dedicated workstreams being embedded into the existing governance structure. The thematic review is currently in the final stages of completion and has focussed on the embedding of continuous quality improvements.” Source location Response from The Children's Trust
Open published response
×
Source evidence
How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Conduct regular audits of care quality, care-plan adherence, and monitoring effectiveness under internal and external scrutiny.
Verbatim wording from the response “○ Regular Audits and Reviews: To support sustained improvement, we have introduced regular audits to assess the quality of care, the implementation of and adherence to care plans, and the effectiveness of our monitoring practices. This work continues and is scrutinised both internally and by our external regulators and commissioners.” Source location Response from The Children's Trust
Open published response
×
Source evidence
How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Implement and embed a shift handover protocol communicating required supervision and observations and recording the preceding shift’s clinical observations.
Verbatim wording from the response “○ Shift Handover Protocol: A revised Shift Handover Protocol has been introduced to ensure that the level of supervision and observation required for each child is understood and clearly communicated during shift changes. Additionally, the last set of clinical observations from the prior shift are recorded and discussed at handover, ensuring a seamless transition and continuity of care. This protocol has been embedded across The Children’s Trust and is subject to continuous review and audit to ensure compliance.” Source location Response from The Children's Trust
Open published response
×
Source evidence
How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Align frequency-of-monitoring policy and clinical guidelines with national best practice through wider consultation and critique.
Verbatim wording from the response “A comprehensive review of our monitoring protocols and individualised care planning process has been undertaken which has led to several critical actions being identified, all of which are now overseen by robust internal governance:” Source location Response from The Children's Trust
Open published response
×
Source evidence
How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Review and audit video surveillance, wearable sensors, and other monitoring tools to ensure appropriate use alongside direct checks.
Verbatim wording from the response “○ Monitoring Tools: A review of monitoring tools, including video surveillance and wearable sensors, has been completed. We continually ensure that these tools are appropriate for each child's needs and used correctly to provide effective oversight without replacing appropriate checks. This initial action is complete and is now continuously reviewed and audited in line with evidence-based practice.” Source location Response from The Children's Trust
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 Consider duty-of-candour review findings alongside manager-regulation consultation findings while developing healthcare candour policy.
Verbatim wording from the response “In relation to your point about the delay in fulfilling the duty of candour obligations, as you may be aware, the statutory duty of candour (organisational) places a direct obligation upon NHS trusts and all other health and social care providers registered with the CQC to be open and honest with patients, service users and their families, when a notifiable safety incident occurs. The Government is supportive of the review on the duty it inherited from the previous administration and will consider the findings, recently published on 26 November, following a call for evidence in April this year. The government will consider these findings alongside findings from the ongoing manager regulation consultation as it continues to develop policy on candour in healthcare.” Source location Response from DHSC
Open published response
×
Source evidence
How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Review and improve the internal multidisciplinary care model across medical, nursing, care, and therapy services alongside broader NHS integration.
Verbatim wording from the response “○ Multi-disciplinary Care Model: We are working with the broader NHS system to improve integration across the whole care pathway and ensure that this is multi-disciplinary across medical, nursing and care and therapy, and not focussed solely on the medical care for the children and young people. Whilst we have a strong internal multi-disciplinary care model focussed around the care of the children, we have also taken the opportunity to commence a detailed review of our internal model alongside broader integration.” Source location Response from The Children's Trust
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 NHS England had no direct or commissioning oversight of Mia’s care because it was local-authority-funded residential care, not specialised commissioning care.
Verbatim wording from the response “Your Report raises multiple concerns in relation to the medical care and appropriate monitoring of Mia, including concerns regarding the access to clinical consultant care and a lack of adherence to her care plan within the residential care setting at Tadworth Children’s Trust (TCT). Noting you have also sent your Report to TCT and CQC, some of the concerns you raise may be better addressed by those organisations. In this response, I have addressed the matters of concern where NHS England are able to contribute and provide some assurance.” Source location Response from NHS England
Open published response
×
Source evidence
How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Some concerns about Mia’s care are better addressed by Tadworth Children’s Trust and the Care Quality Commission.
Verbatim wording from the response “Your Report raises multiple concerns in relation to the medical care and appropriate monitoring of Mia, including concerns regarding the access to clinical consultant care and a lack of adherence to her care plan within the residential care setting at Tadworth Children’s Trust (TCT). Noting you have also sent your Report to TCT and CQC, some of the concerns you raise may be better addressed by those organisations. In this response, I have addressed the matters of concern where NHS England are able to contribute and provide some assurance.” Source location Response from NHS England
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 shared NHS neurological care, local and tertiary access, and monthly multidisciplinary case discussions were considered sufficient clinical oversight.
Verbatim wording from the response “As per ████████’s witness statement it is our understanding that Mia was not without specialist NHS paediatric neuro-consultant care at any time as the paediatric neurology department at St George's Hospital (SGH), Tooting is the tertiary centre for paediatric neurology in the region. There is a shared care arrangement between the neurology department and the SGH and the paediatric department at Epsom hospital, therefore if Mia had required any specialist neurological care this would have been provided by Epsom hospital.” Source location Response from CQC
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How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation The Local Authority, not NHS England, is responsible for overseeing the quality of the residential care service because it commissioned the bed.
Verbatim wording from the response “Mia was in a residential care bed, which is commissioned instead by the Local Authority. The commissioning body, in this case the LA, has the responsibility for oversight of the quality of the service. NHSE have provided assurance that their regional team has been working with system and other partners on responding to risks and concerns in a joint approach at this provider, which will be set out in their response. In case of interest, NHSE’s guidance on specialised services can be found here: NHS commissioning » Specialised services.” Source location Response from DHSC
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How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Strengthened monitoring policies, audits and governance arrangements were considered sufficient to address risks concerning night-time observations and safe care.
Verbatim wording from the response “Since the sad death of Connor Wellsted in 2022 and Mia’s death, CQC have undertaken three subsequent inspections which have demonstrated that TCT have taken the appropriate actions to ensure the governance processes around night time observations have been strengthened. CQC is assured with regard to its own regulatory functions, by the actions taken by TCT. Specifically this includes to strengthening the frequency of monitoring policy and increased their audits of the implementation of this policy.” Source location Response from CQC
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How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation The delay in executing the Duty of Candour was not considered a breach of the Health and Social Care Regulations.
Verbatim wording from the response “During the February 2024 inspection we found all staff had received the appropriate level of training relevant to their role and the healthcare activity they deliver. The education team provided child and young person specific training as the need arose.
We also noted that “staff demonstrated knowledge of the Duty of Candour, to be open and transparent with people including when things go wrong with their care and treatment”. In Mia’s case there was a delay in executing the Duty of Candour, however the CQC did not deem this instance to be a breach of Health and Social Care Regulations.” Source location Response from CQC
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How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Tadworth Children’s Trust remains responsible for ensuring consistent multidisciplinary clinical support for all children in its care.
Verbatim wording from the response “Our NHS England Regional Medical Director has also offered to support with connecting TCT’s clinical team to specialists within the NHS that can offer peer support and further improvement work. However, it would remain TCT’s responsibility to ensure consistency of multi-disciplinary clinical support for all children in their care, whether accessed via NHS or privately funded.” Source location Response from NHS England
Open published response
2 Apr 2024 Andrew Ewin-Ripp · Prevention of Future Deaths report East London
View report summary
Concerns raised 7
Failure to require practitioners to pass essential epilepsy information to patients on discharge View source 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 required annual epilepsy reviews in general practice View source Lack of a care pathway for urgent neurology reviews in response to patient concerns View source Lack of discharge guidance on notifying clinicians about recurrent seizures View source Lack of clear guidance on longer-term epilepsy monitoring and safe discharge timing View source See 4 more concerns
Responses linked to these concerns
Each statement is shown once, even when linked to more than one concern.
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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 Failure to require practitioners to pass essential epilepsy information to patients on discharge
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 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 required annual epilepsy reviews in general practice
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 a care pathway for urgent neurology reviews in response to patient concerns
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 × 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 clear guidance on longer-term epilepsy monitoring and safe discharge timing
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
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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 Provide members with SUDEP and seizure-safety education, including epilepsy-review and safety-checklist resources.
Verbatim wording from the response “▪ SUDEP
We currently have a resource available to members specifically on SUDEP and Seizure Safety (first produced in 2016 and updated in 2021). https://sudep.org/article/sudep-action-rcgp-launch-sudep-e-learning. It emphasises the role of General Practice in carrying out Epilepsy reviews using video and case studies in a 30min online resource. It highlights the use of the SUDEP and Seizure safety checklist https://sudep.org/checklist with resources for both professionals and patients. This course is free to access to all 54,000 RCGP members.” Source location Response from Royal College of General Practitioners
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How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Provide an epilepsy diagnosis and management learning module and podcast promoting regular annual review.
Verbatim wording from the response “▪ Epilepsy Diagnosis and Management
We also have a series of regular Essential Knowledge Updates. In our Update 17 (April 2016 updated April 2024) there is a specific module on Epilepsy Diagnosis and management. A podcast freely available to all in which ████████ talks about and promotes the e learning module highlighting the importance of regular annual review (EKU17: Epilepsy https://podcasts.apple.com/gb/podcast/eku17-epilepsy/id1474942018?i=1000453462614 )” Source location Response from Royal College of General Practitioners
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How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation GP practices are required to follow clinical guidelines that include annual epilepsy reviews.
Verbatim wording from the response “Your Report raised the concern that GP Practices are not required to carry out annual reviews of epilepsy patients. GP Practices required to follow and pay due regard to clinical guidelines. The National Institute for Health and Care Excellence (NICE) has issued clinical guidelines to general practice on annual reviews, including for Epilepsy.” Source location Response from NHS England
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How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Commissioning general practice services is the responsibility of NHS England, not the respondent.
Verbatim wording from the response “The College is not responsible for Commissioning Services from General Practice. In England this role falls to NHS England. General Practice has however been funded for Epilepsy management through the GMS contract and Quality and Outcomes Framework (QOF) since 2004. There is a requirement to maintain a register of adults receiving drug treatment for Epilepsy (EP001). Between 2004 and 2014 there were 2 additional indicators which fell out of the annual review process i.e. those who were seizure free (EP002) and the number of women receiving information and counselling about reproductive issues (EP003). The EP002 and EP003 indicators were retired in 2014 by NHS England. There has just been a Government Consultation which closed on the 7ᵗʰ March around the future of incentives in General Practice including QOF so there may be changes in coming years.” Source location Response from Royal College of General Practitioners
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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 guidelines on long-term epilepsy monitoring and urgent neurology review pathways.
Verbatim wording from the response “Your Report also raises the concerns that there is no clear guidance for the long-term monitoring of patients with epilepsy and that there was no care pathway for incorporating urgent reviews in neurology clinics in response to patients reporting concerns. The National Institute for Health and Care Excellence (NICE) are responsible for the relevant guidelines: Epilepsies in children, young people and adults (nice.org.uk). Most patients with epilepsy will be discharged from follow-up once they are free of seizures for 12 months. At this point, their medication would only be changed if they had further seizures or other issues arise (such as possible adverse effects or consideration of pregnancy). Some patients with additional issues would be monitored for longer (see section 4.5.1 of the guidance).” Source location Response from NHS England
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How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Specific discharge timing recommendations cannot be made because appropriate timing depends on multiple patient-specific variables.
Verbatim wording from the response “• For guidance on longer term monitoring of people with epilepsy, and safe discharge timing it is not possible to provide guidance on this that suits all patients with epilepsy as it depends on many variables. The ABN therefore do not feel that it would be appropriate to make specific recommendations regarding timing for discharge. Many patients are now enrolled in patient-initiated follow-up schemes (or equivalent) rather than being fully discharged. Fewer routine reviews may aid seeing people when most needed.” Source location Response from Royal College of Physicians
Open published response
16 Jan 2024 Trevor Alan MONERVILLE · Prevention of Future Deaths report East Sussex
View report summary
Concerns raised 6
Lack of a mechanism to report medication non-compliance to Security View source Lack of prison staff training in managing long-term health conditions on the wings View source Failure of the CSRA policy to protect prisoners with relevant medical conditions View source
Lack of individualized seizure care planning and monitoring View source Inadequate communication about prisoners’ health conditions View source Deficit in national policy for managing and supporting prisoners with epilepsy and seizures View source See 3 more concerns
Responses linked to these concerns
Each statement is shown once, even when linked to more than one concern.
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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.
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× 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 a mechanism to report medication non-compliance to Security
Wider context from the report “b. Communication between healthcare and prison staff especially when Trevor was returned to the wing, between the prison staff and family, briefing by prison managers to officers on the wing about Trevor’s condition were all inadequate.
Evidence was heard about the lack of integration of various IT systems which contributed to poor communication. In spite of the evidence from PPG regarding the sensitivity of medical records which should not be disclosed to the prison staff, I remain concerned that there was no effective monitoring and management of Trevor on the wing once the ACCT was closed. There was no mechanism in place for prison and healthcare staff to report their concerns about Trevor’s non compliance with taking his medication to Security , thus preventing the cell from being searched for retained medication.
” 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 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 Failure of the CSRA policy to protect prisoners with relevant medical conditions
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 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 Inadequate communication about prisoners’ health conditions
Wider context from the report “b. Communication between healthcare and prison staff especially when Trevor was returned to the wing , between the prison staff and family , briefing by prison managers to officers on the wing about Trevor’s condition were all inadequate.
Evidence was heard about the lack of integration of various IT systems which contributed to poor communication. In spite of the evidence from PPG regarding the sensitivity of medical records which should not be disclosed to the prison staff, I remain concerned that there was no effective monitoring and management of Trevor on the wing once the ACCT was closed. There was no mechanism in place for prison and healthcare staff to report their concerns about Trevor’s non compliance with taking his medication to Security, thus preventing the cell from being searched for retained medication.
” 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 Use confidential intelligence reports to notify Security when patients may be stockpiling medication.
Verbatim wording from the response “Pharmacy technicians manage medication compliance. They have now been given wings to lead on so that they have full oversight of patients on their own wing. SystmOne assists with supporting the identity of patients who have missed doses. In addition, the IR process is in place if it is believed or suspected that a patient might be stockpiling. An IR is an intelligence report that will be received confidentially by the security department.” Source location Response from Practice Plus Group
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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
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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
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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
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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
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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
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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 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
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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 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
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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 Work with NHS England to clarify routine health-information sharing and processes for risk or safeguarding concerns.
Verbatim wording from the response “HMPPS recognises that, information sharing is vital to effective health management of people in prison and is working closely with NHSE to increase staff confidence and support effective information sharing by offering clarity about the general and routine sharing of health information and where risk/safeguarding concerns have been raised.” Source location Response from HM Prison and Probation Service
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 Implement Regional Multi Professional Complex Case Clinic escalation for the most complex patients.
Verbatim wording from the response “Practice Plus Group operates an integrated healthcare model. Any patients pending transfer back to the main wing with ongoing needs are to be discussed at the Multi Professional Complex Case Clinic (MPCCC) prior to transfer. This allows oversight of all departments within the integrated team and a holistic complex care plan to be created. The MPCCC is led by the GP, attended by all clinical leads, and any relevant staff involved in patient care. For individual cases prison partners may be invited to attend and a care plan created with a named coordinator allocated. Practice Plus Group has now implemented a further point of escalation to Regional MPCCC. For the most complex of patients, attendees will include healthcare, prison staff and, on occasion, representatives from NHS England.” 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 Existing information-sharing protocols and weekly meetings are considered appropriate for communication and management of complex safety concerns.
Verbatim wording from the response “There are Information Sharing protocols in place, as directed by national policy, which underpin the exchange of information between healthcare and prison staff. There are several regular meetings involving healthcare and prison staff where individual issues are raised and addressed, including the Safety Intervention Meeting and Multi-Disciplinary Complex Case Clinic, both of which are held weekly.” 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 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 PPG decides whether prisoners with epilepsy require standard or inpatient placement; HMPPS facilitates any required move.
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
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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
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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 Practice Plus Group cannot resolve integration of healthcare and prison IT systems because SystmOne is commissioned by NHS England and medical records are confidential.
Verbatim wording from the response “As to lack of integration of various systems, this is not an issue that Practice Plus Group can resolve. SystmOne is commissioned by NHS England and Practice Plus Group is commissioned to use SystmOne. As with patients in the community, medical records are highly sensitive and personal to the individual. They are not shared with prison staff for reasons of medical confidentiality.” Source location Response from Practice Plus Group
Open published response
18 Sep 2023 Amarjit SINGH · Prevention of Future Deaths report Inner North London
View report summary
Concerns raised 5
Careless completion of cell sharing risk assessments View source Lack of seizure-response training for prison staff View source Unavailability of guidance for prisoners responding to a cellmate’s fit View source
Lack of ongoing first aid training for prison officers View source Low first aid understanding among prison officers View source See 2 more concerns
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 Careless completion of cell sharing risk assessments
Wider context from the report “1. The completion of the cell sharing risk assessment was described by the extremely experienced nurse who completed it, as careless.
” 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 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 × 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 ongoing first aid training for prison officers
Wider context from the report “3. Whilst the fact that not all prison officers receive ongoing first aid training is a national resourcing issue, the level of first aid understanding of some prison officers at HMP Pentonville seemed surprisingly low.
One officer told me that it did not cross his mind to start CPR in the three minutes it took nurses to arrive after Mr Singh was found not breathing. (Mr Singh had been assessed by a custodial manager as having died, but the other officer did not know this at the time.)
A different officer told me he did not know that there is a difference between a person who is unconscious and a person who is dead.
” 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 Low first aid understanding among prison officers
Wider context from the report “3. Whilst the fact that not all prison officers receive ongoing first aid training is a national resourcing issue, the level of first aid understanding of some prison officers at HMP Pentonville seemed surprisingly low .
One officer told me that it did not cross his mind to start CPR in the three minutes it took nurses to arrive after Mr Singh was found not breathing. (Mr Singh had been assessed by a custodial manager as having died, but the other officer did not know this at the time.)
A different officer told me he did not know that there is a difference between a person who is unconscious and a person who is dead .
” 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 Implement the Early Days quality-assurance process, including passport checks, multidisciplinary review, task tracking and completion sign-off before patients leave the system.
Verbatim wording from the response “Q: What strikes me is if that happened on that day, what is happening with all the other prisoners?
A: Since then [AS’s death] changes have been made to the reception process, on each side. There has been a big focus on early days in custody, recognising that the first 14 days and particularly the first couple of days are the most important period in someone’s stay in prison. One of things that would identify poor completion of cell sharing risk assessment is early day passport. This is overseen by custodial managers and nursing staff. There is a checklist to ensure that everything mandatory within the process has been completed and completed to a good standard. Definitely if not completed to good standard would expect that to be flagged to me.
Q: Who is doing this?
A: Custodial managers.” Source location Response from Practice Plus Group
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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 Provide specialised reception-process training, induction explanation, shadowing and periodic refresher training for nurses completing cell-sharing risk assessments.
Verbatim wording from the response “designed training specifically just for the reception process, which is a two day training. Which Antonio has been on recently.” 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 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 action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Publish, introduce and circulate the national First Aid and Emergency Aid Manual to prison staff at HMP Pentonville.
Verbatim wording from the response “The HMPPS National Health and Safety Arrangements for First Aid and Emergency Aid Manual was published and introduced in August 2023 and this was circulated to all prison staff at HMP Pentonville.” Source location Response from HM Prison and Probation Service
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 Distribute emergency response pocket cards to prisons and staff as reminders of how to respond to medical emergencies.
Verbatim wording from the response “should be called. In 2021, all Prisons were also issued with a supply of emergency response pocket cards which were shared with staff. The cards provided an instant reminder of how to respond to a medical emergency. In March 2022, a further supply of the emergency response pocket cards were issued to Regional Group Safety Leads for them to share with their prisons.” Source location Response from HM Prison and Probation Service
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 Issue emergency response guides to all prisons, covering required actions and circumstances for calling a medical emergency response code.
Verbatim wording from the response “At a national level, new emergency response guides were issued to all prisons which set out the actions required of staff in a medical emergency, including all the circumstances listed in the PSI 03/2013 Medical Emergency Response Codes under which a medical emergency response code” 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 Existing reception training, Early Days checks, clinical reviews and monitoring are considered sufficient to prevent inaccurate cell-sharing risk assessments.
Verbatim wording from the response “• Every patient has an Early Days passport as part of the Early Days process, which requires custodial managers and nurses to check off that items like the risk assessment form had been completed and completed to a sufficient standard. This requires a nurse to ensure that the risk assessment has been correctly completed, and sign off the passport.” 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 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
28 Mar 2023 Louis James Rogers · Prevention of Future Deaths report Surrey
View report summary
Concerns raised 10
Failure to document general practice assessment of febrile seizures View source Failure to make timely referrals from general practice to secondary medical services for febrile seizures View source Sudden unexpected death in childhood following febrile seizures View source
Failure to make paramedic information available to all clinicians View source Lack of coordinated response across clinicians to febrile seizure presentations View source Delays in referral for assessment and investigation of febrile seizures View source Failure to ensure febrile seizure diagnoses are supported by the child’s presentation View source Failure to undertake a detailed history and full neurological examination in general practice View source Failure to follow escalation guidance for complex febrile seizures View source Insufficient information for parents and guardians after a child’s febrile seizure View source See 7 more concerns
Responses linked to these concerns
Each statement is shown once, even when linked to more than one concern.
Respondent positions A position is what a respondent says about the concern when they do not describe a specific action. 8
Position
NICE is responsible for producing clinical guidance on the diagnosis, treatment and management of febrile seizures.
Stated by NHS EnglandRedirects responsibilityThe respondent said that another organisation was responsible for deciding or taking action. View source
Position
Existing national guidance is considered sufficient for managing febrile seizures.
Stated by NHS EnglandExisting arrangements considered sufficientThe respondent said that existing arrangements were sufficient, so no further action was needed. View source
Position
Existing national guidance and the Clinical Knowledge Summary are considered sufficient to support timely assessment, investigation and referral for febrile seizures.
Stated by National Institute for Health and Care ExcellenceExisting arrangements considered sufficientThe respondent said that existing arrangements were sufficient, so no further action was needed. View source
Position
RCEM will not lead development of further guidance because the project would be a significant undertaking, but can contribute with other organisations.
Stated by Royal College of Emergency MedicineUnable to actThe respondent said that a constraint prevented them from taking the relevant action. View source
Position
The increased risks after febrile seizures, including epilepsy, neurodevelopmental delay and SUDC, are considered very low.
Stated by NHS EnglandDisputes the concernThe respondent disagreed with part of the concern or the basis for it. View source
Position
NHS England is supporting system-level research and action on SUDIC, while NICE would consider developing guidance only following an NHS England request.
Stated by National Institute for Health and Care ExcellenceRedirects responsibilityThe respondent said that another organisation was responsible for deciding or taking action. View source
Position
The convulsions-in-children guideline does not need improvement at present, subject to routine review and updating when new clinical evidence emerges.
Stated by Association of Ambulance Chief ExecutivesNo action considered necessaryThe respondent said that no further action was needed. View source
Position
AACE is the appropriate organisation to decide whether JRCALC guidelines for paramedic seizure management require updates.
Stated by NHS EnglandRedirects responsibilityThe respondent said that another organisation was responsible for deciding or taking action. View source See 7 more positions
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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
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
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 Sudden unexpected death in childhood following 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
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 paramedic information available to all clinicians
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
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
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
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
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 undertake a detailed history and full neurological examination in general practice
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
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
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 Insufficient information for parents and guardians after a child’s febrile seizure
Wider context from the report “2. Information provided to parents/guardians after their child had a Febrile Seizure
Evidence was heard that the NHS website and pamphlet provided to parents/guardians following a child’s febrile seizure is insufficiently informative to provide parents with sufficiently detailed information to assist them in picking up potential early indicators of a more severe illness e.g. issues with gait, co-ordination, definition of complex seizures, developmental regression etc.
” Source location Louis James Rogers · 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 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
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 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
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 Review related actions, including support for families and improving the evidence base on SIDS, safer sleep, SUDC and febrile seizures.
Verbatim wording from the response “I would also like to highlight the National Child Mortality Database Thematic Report (published December 2022) which includes a recommendation for action by the Department of Health and Social Care (DHSC), NHS England and National Child Mortality Database (NCMD) to ‘Ensure there is robust and consistent national training available on the child death review statutory process, Sudden Infant Death Syndrome (SIDS), Sudden Unexplained Death in Childhood (SUDC) and available resources’. Work is underway to review this and other related actions, to include providing high-quality support for families on these issues as well as to improve the evidence base for research on SIDS and safer sleep, and on SUDC and association with febrile seizures. We will also look to engage with the Royal College of Paediatrics and Child Health (RCPCH) on this matter.” Source location Response from NHS England
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 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
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 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
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 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
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 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
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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
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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
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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
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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
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How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation The increased risks after febrile seizures, including epilepsy, neurodevelopmental delay and SUDC, are considered very low.
Verbatim wording from the response “The increased risk of children who have experienced febrile seizures of developing epilepsy, having neurodevelopmental delays, or suffering SUDC is very low. Febrile seizures are very common in childhood and there is a balance to be met to avoid disproportionately concerning parents and carers. We have heard from Paediatric Neurology specialists that the advice within the leaflet on febrile seizures should be tailored to safety-netting during seizure, management of infection and who to contact if further seizures occur.” Source location Response from NHS England
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How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation NHS England is supporting system-level research and action on SUDIC, while NICE would consider developing guidance only following an NHS England request.
Verbatim wording from the response “NICE’s chief medical officer, ████████, and interim senior responsible officer for patient safety, ████████, recently met with representatives of NHS England (NHSE) and the Royal College of Paediatrics and Child Health (RCPCH) to discuss this matter. We understand colleagues at NHSE have met with the National Child Mortality Database team and SUDIC charities and will be supporting a proposal for a round table to discuss and kickstart research and other actions in this area. The RCPCH has indicated that they are happy to support this approach and NICE would consider any request from NHSE to develop guidance in this area in the normal way.” Source location Response from NICE
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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
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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
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3 Jan 2020 James Thomas Wheeler · Prevention of Future Deaths report Manchester South
View report summary
Concerns raised 4
Failure to provide annual Care Act Reviews to eligible service users View source Lack of authoritative guidance on monitoring people with refractory epilepsy View source Insufficient resources for councils to undertake annual Care Act reviews View source
Lack of guidance on the availability and use of assistive technology for monitoring people at high risk from seizures View source See 1 more concern
Responses linked to these concerns
Each statement is shown once, even when linked to more than one concern.
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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 Failure to provide annual Care Act Reviews to eligible service users
Wider context from the report “2. To Ms Pam Smith, Chief Executive, Stockport Metropolitan Borough Council
The court heard evidence that, notwithstanding the Local Authority’s statutory obligations under the Care Act 2014 in this regard, Mr Wheeler (and indeed many other eligible service users) did not receive annual Care Act Reviews as required by law .
Whilst the court heard evidence about the process of transformation of adult social care underway within the Local Authority, it is a matter of concern that the default position still appears to be that an obligatory Care Act Review will not take place , unless some exceptional circumstance is identified about the case.
” Source location James Thomas Wheeler · 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 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
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How this individual concern was interpreted PFD Monitor created a concise, searchable interpretation from the report wording shown below.
PFD Monitor interpretation Insufficient resources for councils to undertake annual Care Act reviews
Wider context from the report “3. To Rt. Hon. Matt Hancock, Secretary of State for Health and Social Care
The court heard evidence that, whilst parliament had conferred on Local Authorities a statutory duty to undertake annual reviews pursuant to the Care Act 2014, insufficient resources had been made available to enable councils to discharge this duty alongside existing statutory obligations .
” Source location James Thomas Wheeler · 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 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
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 Create a dedicated team of six social workers and a manager to address the Learning Disabilities Service review backlog during 2020/21.
Verbatim wording from the response “However, at present Stockport Council is in the process of addressing these matters. A business case has been presented and agreed, in order to fund and create a dedicated review team comprising initially of six social workers plus a team manager - including an option to increase staff numbers as required - with a view to addressing the entire backlog of reviews throughout the financial year 2020/21. Furthermore, additional work will be undertaken with the intention of evaluating Stockport Council’s staffing resource and implementing a sustainable model for managing reviews from April 2021 onwards.” Source location 2020-0001-Response-from-Stockport-Metropolitan-Borough-Council-Redacted
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How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Evaluate staffing resources and develop a sustainable model for managing Learning Disabilities Service reviews from April 2021.
Verbatim wording from the response “However, at present Stockport Council is in the process of addressing these matters. A business case has been presented and agreed, in order to fund and create a dedicated review team comprising initially of six social workers plus a team manager - including an option to increase staff numbers as required - with a view to addressing the entire backlog of reviews throughout the financial year 2020/21. Furthermore, additional work will be undertaken with the intention of evaluating Stockport Council’s staffing resource and implementing a sustainable model for managing reviews from April 2021 onwards.” Source location 2020-0001-Response-from-Stockport-Metropolitan-Borough-Council-Redacted
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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
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How this respondent action was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Provide councils with access to additional social care funding to support rising demand and stabilise services.
Verbatim wording from the response “To support local authorities, we are providing councils with access to an additional £1.5billion for adults and children’s social care next year. This includes an additional £1billion of grant funding for adults and children’s social care, and a proposed 2 per cent precept⁴ that will enable councils to access a further £500million for adult social care. This £1.5billion is on top of maintaining the £2.5billion of existing social care grants and will support local authorities to meet rising demand and continue to stabilise the social care system.” Source location 2020-0001-Response-from-the-Department-of-Health-and-Social-Care-Redacted-1
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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
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How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Stockport Council is responsible for meeting its statutory duty to conduct regular care-plan reviews.
Verbatim wording from the response “I am deeply concerned that the inquest into Mr Wheeler’s death found that annual reviews of his care were not conducted as required by the Social Care Act 2014¹. I am equally concerned at the suggestion in your report that Stockport Metropolitan Borough Council social services may not be carrying out annual reviews of care apart from under exceptional circumstances. I expect Stockport Council to look into this matter thoroughly.” Source location 2020-0001-Response-from-the-Department-of-Health-and-Social-Care-Redacted-1
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