Charlie Marriage
PFD Report
All Responded
Ref: 2025-0048
All 1 response received
· Deadline: 21 Mar 2025
Coroner's Concerns (AI summary)
Patients with "cliff-edge conditions" are not identified within the health system, leading to inadequate patient awareness of risks, poor urgent care recognition, and unreliable emergency medication access.
View full coroner's concerns
(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.
(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.
Responses
Action Taken
NHS England has instigated the Medicines Safety Improvement Programme, which has been working to improve access to “Time Critical Medicines”. They have also launched the Pharmacy First scheme to help patients access urgent medications. (AI summary)
NHS England has instigated the Medicines Safety Improvement Programme, which has been working to improve access to “Time Critical Medicines”. They have also launched the Pharmacy First scheme to help patients access urgent medications. (AI summary)
View full response
Dear Coroner, Re: Regulation 28 Report to Prevent Future Deaths – Charlie Marriage who died on Saturday 26 June 2021
Thank you for your Report to Prevent Future Deaths (hereafter “Report”) dated 24 January 2025 concerning the death of Charlie Marriage on Saturday 26 June 2021. In advance of responding to the specific concerns raised in your Report, I would like to express my deep condolences to Charlie’s family and loved ones. NHS England are keen to assure the family and the Coroner that the concerns raised about Charlie’s care and the circumstances surrounding his death have been listened to and reflected upon.
Your Report raises concerns over the risks to patients who are medication dependent, who may be at significant risk of sudden crisis or death without their medication. You have raised that these patients may not be fully aware of the risks of death associated with not being medicated, and that the potential urgency and level of danger created by an absence of medication is not quickly identified and understood when patients seek medical advice and/or medication.
Your Report raises important insights around “cliff-edge conditions” such as epilepsy, particularly where a patient’s condition may deteriorate very rapidly without any obvious worsening signs or where their potential vulnerability is not recognised. You have also noted that sending patients to a pharmacy may not reliably mitigate their risks quickly, especially where their medication is not easily available on an ad hoc local basis and may not be in stock.
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.
National Medical Director NHS England Wellington House 133-155 Waterloo Road London SE1 8UG
24 March 2025
All NHS Services are required to adhere to the National Institute for Health and Care Excellence (NICE) guidelines. This is a professional and contractual imperative. The NICE Guidelines on Epilepsy (NG217, published in April 2022 and updated in January
2025) require specialist clinicians to: “Discuss with people with epilepsy, and their families and carers if appropriate, their individual risk of epilepsy-related death, including SUDEP, from the time of diagnosis onwards.” (see 10.1.4). It is also a requirement to: “Arrange regular (at least annual) monitoring reviews for adults with epilepsy”, including those with “a high risk of sudden unexpected death in epilepsy (SUDEP)” (see 4.4.1).
The September 2021 national specialty report for neurology from the Getting It Right First Time (GIRFT) programme focuses on improving access to care for patients with neurological disorders across England, including patients with intermittent and unpredictable conditions such as epilepsy (Neurology - Getting It Right First Time - GIRFT). This programme follows on from Charlie’s death and will increase the opportunity for patients to have these important discussions.
The National Institute for Health and Care Excellence has also published guidance for pharmacists on making an emergency supply of medication, which reinforces the guidance of the Royal Pharmaceutical Society which states: “The pharmacist should consider the medical consequences of not supplying a medicine in an emergency” and “If the pharmacist is unable to make an emergency supply of a medicine the pharmacist should advise the patient how to obtain essential medical care.”
NHS England, alongside the Department of Health and Social Care (DHSC), previously issued guidance in November 2019 on how clinicians should manage instances where medication is needed urgently and when it is in short supply. This states: “In all cases of medicines supply issues, community pharmacies should endeavour to communicate any supply issues and relevant information about resupply dates and the proposed management plan clearly with patients. They should also undertake counselling to support affected patients where possible.” (see 11.1.3).
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).
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.
The Royal Pharmaceutical Society (RPS) and the Royal College of General Practitioners (RCGP) have published a toolkit for GP practices to use, to assess and improve the safety and effectiveness of their repeat prescribing systems. This toolkit highlights the need for practices to ensure that they have taken into account high risk medicines. The medicines it identifies as high risk are those that are most commonly associated with serious adverse reactions, but it is not specific to medication for epilepsy. The toolkit recommends using the following text as an example of information that practices might share with patients about repeat prescriptions: “Please try not to run out of your medicines. When you are running low, e.g., have two weeks’ supply remaining, please request the next prescription. If you accidentally run low or run out, we will try to process your request as quickly as possible, but please remember that the request process must be carried out thoroughly and safely and that GP practice teams are extremely busy. Emergency supply requests for medicine can be requested from NHS 111 or 111 Online in an urgent situation. The pharmacy will check the GP record/National Care Record to ensure that they are not making duplicate supplies to ensure your safety and reduce waste.”
When a patient identifies to NHS 111 that they have run out of medication, the caller will establish when the next dose is due. If a prescription cannot be sourced from the patient's own GP within this time period, the patient is referred to an open local pharmacy under the Pharmacy First Scheme, once it has been confirmed that the patient does not need a symptomatic assessment.
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.
We note that at the time of this incident, England still had legal restrictions in place to prevent Covid-19 deaths. Primary care and community pharmacies were under huge amounts of pressure, whist maintaining necessary but burdensome infection prevention measures. Since this time, we have taken steps to increase access to primary care services, including a shift to digital services and a reduction in the bureaucratic load on general practice, and the commissioning of the Pharmacy First to better support people who need urgent access to medicines.
I would also like to provide further assurances on the national NHS England work taking place around the Reports to Prevent Future Deaths. All reports received are discussed by the Regulation 28 Working Group, comprising Regional Medical Directors, and other clinical and quality colleagues from across the regions. This ensures that key learnings and insights around events, such as the sad death of Charlie, are shared across the NHS at both a national and regional level and helps us to pay close attention to any emerging trends that may require further review and action.
Thank you for bringing these important patient safety issues to my attention and please do not hesitate to contact me should you need any further information.
Thank you for your Report to Prevent Future Deaths (hereafter “Report”) dated 24 January 2025 concerning the death of Charlie Marriage on Saturday 26 June 2021. In advance of responding to the specific concerns raised in your Report, I would like to express my deep condolences to Charlie’s family and loved ones. NHS England are keen to assure the family and the Coroner that the concerns raised about Charlie’s care and the circumstances surrounding his death have been listened to and reflected upon.
Your Report raises concerns over the risks to patients who are medication dependent, who may be at significant risk of sudden crisis or death without their medication. You have raised that these patients may not be fully aware of the risks of death associated with not being medicated, and that the potential urgency and level of danger created by an absence of medication is not quickly identified and understood when patients seek medical advice and/or medication.
Your Report raises important insights around “cliff-edge conditions” such as epilepsy, particularly where a patient’s condition may deteriorate very rapidly without any obvious worsening signs or where their potential vulnerability is not recognised. You have also noted that sending patients to a pharmacy may not reliably mitigate their risks quickly, especially where their medication is not easily available on an ad hoc local basis and may not be in stock.
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.
National Medical Director NHS England Wellington House 133-155 Waterloo Road London SE1 8UG
24 March 2025
All NHS Services are required to adhere to the National Institute for Health and Care Excellence (NICE) guidelines. This is a professional and contractual imperative. The NICE Guidelines on Epilepsy (NG217, published in April 2022 and updated in January
2025) require specialist clinicians to: “Discuss with people with epilepsy, and their families and carers if appropriate, their individual risk of epilepsy-related death, including SUDEP, from the time of diagnosis onwards.” (see 10.1.4). It is also a requirement to: “Arrange regular (at least annual) monitoring reviews for adults with epilepsy”, including those with “a high risk of sudden unexpected death in epilepsy (SUDEP)” (see 4.4.1).
The September 2021 national specialty report for neurology from the Getting It Right First Time (GIRFT) programme focuses on improving access to care for patients with neurological disorders across England, including patients with intermittent and unpredictable conditions such as epilepsy (Neurology - Getting It Right First Time - GIRFT). This programme follows on from Charlie’s death and will increase the opportunity for patients to have these important discussions.
The National Institute for Health and Care Excellence has also published guidance for pharmacists on making an emergency supply of medication, which reinforces the guidance of the Royal Pharmaceutical Society which states: “The pharmacist should consider the medical consequences of not supplying a medicine in an emergency” and “If the pharmacist is unable to make an emergency supply of a medicine the pharmacist should advise the patient how to obtain essential medical care.”
NHS England, alongside the Department of Health and Social Care (DHSC), previously issued guidance in November 2019 on how clinicians should manage instances where medication is needed urgently and when it is in short supply. This states: “In all cases of medicines supply issues, community pharmacies should endeavour to communicate any supply issues and relevant information about resupply dates and the proposed management plan clearly with patients. They should also undertake counselling to support affected patients where possible.” (see 11.1.3).
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).
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.
The Royal Pharmaceutical Society (RPS) and the Royal College of General Practitioners (RCGP) have published a toolkit for GP practices to use, to assess and improve the safety and effectiveness of their repeat prescribing systems. This toolkit highlights the need for practices to ensure that they have taken into account high risk medicines. The medicines it identifies as high risk are those that are most commonly associated with serious adverse reactions, but it is not specific to medication for epilepsy. The toolkit recommends using the following text as an example of information that practices might share with patients about repeat prescriptions: “Please try not to run out of your medicines. When you are running low, e.g., have two weeks’ supply remaining, please request the next prescription. If you accidentally run low or run out, we will try to process your request as quickly as possible, but please remember that the request process must be carried out thoroughly and safely and that GP practice teams are extremely busy. Emergency supply requests for medicine can be requested from NHS 111 or 111 Online in an urgent situation. The pharmacy will check the GP record/National Care Record to ensure that they are not making duplicate supplies to ensure your safety and reduce waste.”
When a patient identifies to NHS 111 that they have run out of medication, the caller will establish when the next dose is due. If a prescription cannot be sourced from the patient's own GP within this time period, the patient is referred to an open local pharmacy under the Pharmacy First Scheme, once it has been confirmed that the patient does not need a symptomatic assessment.
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.
We note that at the time of this incident, England still had legal restrictions in place to prevent Covid-19 deaths. Primary care and community pharmacies were under huge amounts of pressure, whist maintaining necessary but burdensome infection prevention measures. Since this time, we have taken steps to increase access to primary care services, including a shift to digital services and a reduction in the bureaucratic load on general practice, and the commissioning of the Pharmacy First to better support people who need urgent access to medicines.
I would also like to provide further assurances on the national NHS England work taking place around the Reports to Prevent Future Deaths. All reports received are discussed by the Regulation 28 Working Group, comprising Regional Medical Directors, and other clinical and quality colleagues from across the regions. This ensures that key learnings and insights around events, such as the sad death of Charlie, are shared across the NHS at both a national and regional level and helps us to pay close attention to any emerging trends that may require further review and action.
Thank you for bringing these important patient safety issues to my attention and please do not hesitate to contact me should you need any further information.
Sent To
- NHS England
Response Status
Linked responses
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56-Day Deadline
21 Mar 2025
All responses received
About PFD responses
Organisations named in PFD reports must respond within 56 days explaining what actions they are taking.
Source: Courts and Tribunals Judiciary
Report Sections
Investigation and Inquest
On 1 July 2021 an investigation into the death of Charlie Marriage commenced. The investigation concluded with an inquest hearing starting on 9 December 2024 and a conclusion hearing on 21 January 2025. The conclusion of the inquest was that Mr Marriage died from SUDEP (Sudden Unexpected Death in Epilepsy), but this in the context of, and likely contributed to, by his lack of medication, despite his efforts to obtain it over the course of two days.
Circumstances of the Death
Mr Marriage had a longstanding diagnosis of idiopathic generalised epilepsy and suffered grand mal seizures with no warning. The risk of these had become well managed with medication, in particular Fycompa (Perampanel). On Thursday 24 June 2021 he would finish his medication, but he expected to pick up a repeat prescription from a pharmacy in Uxbridge (he studied at Brunel University) the following day. He was then notified to self-isolate for Covid, which prevented the long journey to pick up his repeat medication. The following day he sought to obtain a new repeat prescription via his GP practice for a local pharmacy, but this was not recognised to be urgent in time. Both the GP practice and the university pharmacy were closed over the weekend. On Saturday 26 June he called 111, which promptly arranged for a “referral” for his medication to be sent to a local pharmacy. There it was not promptly identified that the Fycompa could not be supplied, resulting in several wasted calls to 111, and the loss of time and motivation. He was referred back to 111 by the pharmacist, though it was they that should have sought to find a solution. 111 identified that a clinician would be required to help resolve the situation, but Mr Marriage did not receive a call back from one. That night he suffered a seizure that caused his death at home. The lack of Fycompa likely increased the prospect of a severe seizure and contributed to his death. The growing risk of him suffering SUDEP over the 48 hours since his last dose had not been recognised or resulted in appropriate prioritisation, safety-netting, or an emergency supply.
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