PFD report

Charlie Marriage · Prevention of Future Deaths report

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Issued 24 Jan 2025•Inner South London

Report record

Published report and response evidence

This page connects the concerns raised in this report with statements found in recipients’ published responses. A link shows a clear evidence connection; it does not assign responsibility.

View original report
Concerns
6

Raised in this report

Recipients
1

Named on the report

Responses found
1

Of 1 recipient

Stated actions
5

Described in responses

Recipients and published responses

Source document

Full report text

This is the full text from the original published report.

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Concerns and recipient responses

Select any concern, action or position to view the source wording.

Report evidence summary

Concerns raised6

  1. Failure to maintain medical oversight of medication-dependent patients until appropriately medicated
  2. Failure to recognise and communicate medication-related crisis vulnerability in medical records
  3. Failure to provide appropriately urgent clinical support and safety-netting for medication-related crisis risk
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 recipient says it has done, is doing, or plans to do in response to a concern raised.3

  1. Action

    Commission and launch the Pharmacy First service to support timely access to urgently required medicines.

    Stated by NHS EnglandStated completedThe respondent said that this action was complete when they made their response on 28 January 2025.
  2. Action

    Investigate technology to track medication stocks across community pharmacies and improve management of high-impact national shortages.

    Stated by NHS EnglandStated in progressThe respondent said that this action was in progress when they made their response on 28 January 2025.
  3. Action

    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.

    Stated by NHS EnglandStated in progressThe respondent said that this action was in progress when they made their response on 28 January 2025.

Respondent positions A position is what a recipient says about a concern when it does not describe a specific action.2

  1. Position

    Current technology cannot track medication stocks across community pharmacies, limiting the ability to implement such tracking nationally.

    Stated by NHS EnglandUnable to actThe respondent said that a constraint prevented them from taking the relevant action.

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

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. ”

Is this part of a recurring concern?

No recurring-concern membership is currently published.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

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. ”

Is this part of a recurring concern?

No recurring-concern membership is currently published.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

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. ”

Is this part of a recurring concern?

No recurring-concern membership is currently published.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

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. ”

Is this part of a recurring concern?

No recurring-concern membership is currently published.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

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. ”

Is this part of a recurring concern?

No recurring-concern membership is currently published.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

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. ”

Is this part of a recurring concern?

Yes — Inadequate safety-netting advice for patients and carers.

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

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
Page 2 · response
Published 28 January 2025

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

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
Page 2 · response
Published 28 January 2025

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

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
Page 1 · response
Published 28 January 2025

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
Page 2 · response
Published 28 January 2025

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

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
Page 3 · response
Published 28 January 2025

Open published response

Other statements in published responses

These actions and other statements could not be clearly connected to one concern in this report.

Recipient-stated actions An action is something a recipient says it has done, is doing, or plans to do in response to a concern raised.2

  1. 1

    Increase access to primary care through digital services and reduced bureaucratic demands on general practice.

    Stated by NHS EnglandStated completedThe respondent said that this action was complete when they made their response on 28 January 2025.
  2. 2

    Discuss received Prevention of Future Deaths reports through the Regulation 28 Working Group and share relevant learning across national and regional NHS services.

    Stated by NHS EnglandStated completedThe respondent said that this action was complete when they made their response on 28 January 2025.

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

Increase access to primary care through digital services and reduced bureaucratic demands on general practice.

Verbatim wording from the response

“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.”

Source location

Response from NHS England
Page 3 · response
Published 28 January 2025

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

Discuss received Prevention of Future Deaths reports through the Regulation 28 Working Group and share relevant learning across national and regional NHS services.

Verbatim wording from the response

“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.”

Source location

Response from NHS England
Page 3 · response
Published 28 January 2025

Open published response
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Information checked against the published report and official responses · Data reviewed 7 Sep 2026 · About data quality and limitations

Official responses located
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Data last updated 7 September 2026