Prevention of Future Deaths reports · 2025
Regulation 28 report to prevent future deaths, reference 2025-0048, written 24 Jan 2025. A coroner writes one of these when an inquest reveals a risk that could cause further deaths unless something changes.
| Date of report | 24 Jan 2025 |
|---|---|
| Reference | 2025-0048 |
| Deceased | Charlie Marriage |
| Coroner | Xavier Mooyaart |
| Coroner area | London Inner (South) |
| Category | Alcohol, drug and medication related deaths |
| Source | judiciary.uk record · original PDF |
| Responses published | 1 |
Text extracted from the PDF text layer. Reproduced verbatim, including the scan's own layout.
REGULATION 28: REPORT TO PREVENT FUTURE DEATHS 1 2 3 4 REGULATION 28 REPORT TO PREVENT FUTURE DEATHS THIS REPORT IS BEING SENT TO: 1. , Chief Executive of NHS England, Skipton House, 80 London Road, London, SE1 6LH CORONER I am Xavier Mooyaart, an assistant coroner for the coroner area of Inner South London. CORONER’S LEGAL POWERS I make this report under paragraph 7, Schedule 5, of the Coroners and Justice Act 2009 and Regulations 28 and 29 of the Coroners (Investigations) Regulations 2013. 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 1 5 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. CORONER’S CONCERNS During the course of the inquest the evidence revealed matters giving rise to concern. In my opinion there is a risk that future deaths could occur unless action is taken. In the circumstances it is my statutory duty to report to you. The MATTERS OF CONCERN are as follows. – (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. 6 ACTION SHOULD BE TAKEN In my opinion action should be taken to prevent future deaths and I believe NHS-England has the power to take such action. 2 YOUR RESPONSE You are under a duty to respond to this report within 56 days of the date of this report, namely by Tuesday 25th March 2025. I, the coroner, may extend the period. Your response must contain details of action taken or proposed to be taken, setting out the timetable for action. Otherwise, you must explain why no action is proposed. COPIES and PUBLICATION I have sent a copy of my report to the Chief Coroner and to the following other Interested Persons: the family of Mr Marriage, the Waterloo Health Centre, a then receptionist for the GP practice, SuperDrug, the locum pharmacist employed in a particular SuperDrug branch at the time, the London Ambulance Service, and Derbyshire Health United. I am also under a duty to send a copy of your response to the Chief Coroner and all interested persons who in my opinion should receive it. I may also send a copy of your response to any other person who I believe may find it useful or of interest. The Chief Coroner may publish either or both in a complete or redacted or summary form. He may send a copy of this report to any person who he believes may find it useful or of interest. You may make representations to me, the coroner, at the time of your response, about the release or the publication of your response by the Chief Coroner. 7 8 9 24 January 2025 3
1 response published against this report on judiciary.uk. A response is a body's written reply to the coroner's concerns; publication is at the discretion of the Chief Coroner's office, so an absent response does not mean nobody replied.
Mr Xavier Mooyaart
HM Assistant Coroner
Inner South London
Southwark Coroner’s Court
1 Tennis Street
London
SE1 1YF
Dear Coroner,
National Medical Director
NHS England
Wellington House
133-155 Waterloo Road
London
SE1 8UG
24 March 2025
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.
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.
Yours sincerely,
National Medical Director
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