Freezing wind scorched my cheeks as I approached Southwark Coroner’s Court, a charmless building overlooking a car park, some recycling bins and the back of a housing estate. The dour surroundings seemed to hint at the work taking place inside, investigations of unexplained, unnatural or violent deaths.
I was meeting my family there to hear evidence gathered as part of the inquest into my brother’s death. I wrote about Charlie, who died in 2021 at the age of 32, once before. But I didn’t delve into the circumstances of his death, as they were still under investigation.
Three and a half years later, my family and I wanted answers during the week-long inquest. We hoped that two questions in particular would be answered: who, if anyone, contributed to my brother’s death? And was it preventable?
Simply getting to the inquest on time had been a struggle. My partner and I divided up the work of getting our three small children to different childcare. I’d tried to explain to my five- and three-year-olds why I was rushing them out of the door. “It’s a very important week,” I told them. “I have to be quick, because I cannot be late. A judge is going to speak to lots of people — doctors and medicine people — to try and work out why uncle Charlie died.”
The kids are used to talking about uncle Charlie, and they recognise his face from photos. But they don’t understand death. Still, they seemed to grasp my need for urgency and bombarded me with questions about uncle Charlie all the way to school: Does he live in the sky, or in the ground? Do I miss him? What’s a judge? My daughter told me not to worry. If I “dive”, she said, she’d bring me back.
Once inside the Coroner’s Court, I was asked to sign in, then directed towards a lobby area where everyone due to give evidence was sitting, alongside the family and an array of lawyers. Charlie’s death was complicated, and most “interested persons” or IPs, as the coroner refers to them, have their own legal representation. There were nine IPs in all, including my family and all the people Charlie interacted with in the 48 hours before his death: representatives from his doctor’s surgery, the London Ambulance Service, pharmacy chain Superdrug and NHS England, as well as a pharmacist who worked near his old flat and the receptionist at his surgery. There were also two people representing branches of NHS 111, the phone service that provides medical advice across the UK.
Stepping into the courtroom itself is like crossing through a portal to another decade: wood-panelled walls, ornate cornicing and a royal coat of arms with a magnificent lion and unicorn poised above the coroner’s seat. The coroner, Mr Xavier Mooyaart, also seemed to hail from a bygone era. Dressed in a pale pink shirt and navy blue jacket, with slightly floppy fair-brown hair, he looked every inch the English gentleman. His calm but sonorous voice lent a sense of order to what often felt like a chaotic process.
Of the nine IPs giving evidence at court, three dialled in over video. Frustratingly, we lost hours of time to technology mishaps and glitches. But over the course of five days, the inquest developed a clearer picture of Charlie’s final hours. It also offered a macabre but fascinating glimpse of how medical practitioners in the UK interact with the public, and the code words patients might unknowingly say that can send them to the top — or bottom — of the urgency list. It shed light on the algorithms dictating which patients are prioritised over others. And it highlighted, again and again, the colossal pressure our healthcare system is under.
Charlie was epileptic. He suffered his first “grand mal” seizure — losing consciousness and crashing to the floor, limbs thrashing — at the age of 14. Afterwards, he struggled to control his epilepsy, having seizures weekly or monthly from his teenage years into his late twenties. There were often contributing factors — the stress of starting a new job, travelling alone, being overtired — but sometimes the seizures were simply random. Whenever I saw an ambulance, sirens screaming, bombing down the street, I would worry Charlie might be inside. Perversely, I now miss that fear.
Charlie was unlucky too. Most people with epilepsy manage to control it completely through medication; many end up no longer needing treatment at all. Charlie’s specialist doctors tinkered with different combinations of drugs to help control the seizures, but for years the fight often felt futile. There was a breakthrough around the time Charlie turned 30, though. A new drug, Fycompa, alongside two other medications, proved transformative.
Charlie’s seizures dropped to once or twice a year and, even then, there was often an identifiable trigger. He was more prone to seizures while exercising; two of his last seizures occurred while playing basketball and while on a jog. But Charlie seemed to be moving into a new stage of his life, in which he could even contemplate being seizure-free. As the coroner put it while delivering his verdict, Charlie had been “close to remission”.
Then came June 2021. The UK was starting to emerge from the Covid-19 pandemic, although some restrictions were still in place. Charlie was living in Camberwell, south-east London, and studying to become an occupational therapist at Brunel University of London, a two-hour journey away. He had arranged to collect his repeat prescription of medication from the campus pharmacy on June 25, a Friday. But that Thursday evening, he received a government alert telling him to self-isolate, as a close contact had tested positive for Covid. Charlie was due to run out of medication the following evening.
Exactly what time Charlie called his GP practice on the Friday had always been in question. The evidence heard at inquest indicated Charlie told my mum and call handlers at NHS 111 that he had called his GP multiple times, beginning Friday morning, and that no one had got back to him. What is certain is that Charlie called his GP practice just after 4pm on the Friday and sent an electronic message at 4.14pm, requesting an emergency prescription. This was never issued.
By that Saturday morning, Charlie was getting stressed. He had run out of Fycompa. His campus pharmacy was closed until Monday, as was his GP’s office. He called my mum for help, she suggested he call NHS 111 to obtain an emergency prescription.
NHS 111 was introduced in England in 2011 to provide urgent healthcare advice around the clock in non-life-threatening situations. Its launch under the Conservative-Liberal Democrat coalition government was controversial at the time, as it replaced a previous service, NHS Direct, which had been staffed by qualified nurses and aimed to reduce pressure on GPs and emergency departments. NHS 111, in contrast, is operated by “call handlers”, assisted by computer algorithms to make assessments. Call handlers are supposed to be supported by medically qualified clinicians to help deal with complex calls.
Charlie called the service at 10.32am on Saturday morning. “Basically, I’ve got a bit of an emergency with my medication,” he told the NHS 111 employee on the phone, according to transcripts presented in court. He explained the situation, and the call handler told him a repeat prescription or “referral” had been sent to his local pharmacy, Superdrug. Before ending the call, they added: “If there are any new symptoms or the condition gets worse, you have any changes, or you have any other concerns at all, then please give us a call back.”
Charlie seemed pleased with the outcome. “Amazing,” he said towards the end of the call. “Thank you very much for your help, mate.” He made his way to Superdrug, calling my mum and asking her to drive over to go into the pharmacy on his behalf, as he was worried about breaching the self-isolation instructions.
Charlie stood outside the pharmacy from around 10.45am that morning to 1pm, trying in vain to track down his medication. Initially, the pharmacist told my mum that NHS 111 had not sent anything through. So Charlie called NHS 111 back at 11.34am. His first call had been answered by the Yorkshire hub of the service. His second call went to a hub in Derbyshire. This branch had no record of the first call, so Charlie spent eight minutes phonetically spelling out his name, home address, previous address and the names and dosages of his medications.
After that, the call handler reassured him the prescription had once again been sent to Superdrug. The transcripts of these calls are a crushing read for family members. Charlie’s voice, and his diction, shine through them so clearly. So too does his mounting fear and frustration.
“Is there anything I can do to avoid having to go through [everything] again?” he asked the second call handler, clearly already feeling pessimistic about the system working properly.
“There is no reason why it shouldn’t go through now,” the handler replied.
“All right, all right,” Charlie said. “Well, I’ll go and try again. Yeah. Thanks a lot, mate.”
This call ended with the same advice from the call handler: “If there are any new symptoms or if your condition gets worse, changes or you have any other concerns, call us back.”
After the second call, my mum re-entered Superdrug, only to again be told by the pharmacist that nothing had arrived from NHS 111. At midday, Charlie called the service for the third time and ended up speaking to another call handler who introduced herself as a “health adviser” named Kelly.
Kelly also had no record of Charlie’s previous calls, so he spent three minutes going over his name, address, date of birth and re-outlining the problem. This time, Charlie asked her to speak directly to the Superdrug pharmacist to clear up the confusion. In the transcript of that conversation, the pharmacist told Kelly that he only had two of the three medications Charlie needed in stock — information that he did not relay to my mum or brother. The pharmacist urged Kelly to send a referral to a nearby Boots pharmacy instead.
When Charlie resumed the call with Kelly at 12.08pm, she said he would be placed in a queue to speak to a “clinician”, someone with medical qualifications. This meant further delays. Charlie pleaded with her to simply send the same referral to a different pharmacy.
“So what we need to do is send it back to the clinician, OK?” Kelly told him. “And the clinician will contact you and you will be able to tell him which pharmacy you want it sent to.”
“OK, do you know how long that will take?”
“I’m unsure, but they will get in contact with you as soon as they can,” she replied.
“Can I get a ballpark on what that means?”
“I’m unsure. I haven’t got a timescale on that.”
Charlie’s exasperation finally hit breaking point: “Because it’s an emergency, do you understand? Like . . . I don’t know if I made it clear?”
Kelly repeated that she did not have a timeframe. But Charlie kept protesting again, and she eventually told him a clinician would call within two hours. “Is there no way I can put a rush on that?” Charlie asked.
“Unfortunately not,” she said.
By this point in the records, Charlie comes across as increasingly desperate, asking Kelly to speak to his mum, “because I don’t think I really understand what is going on here”.
My mum, who had been with Charlie throughout the conversation, took the phone and tried to get across the urgency of the situation. She told Kelly: “He has severe epilepsy, with life-threatening seizures fairly regularly, mostly prompted by frustration and anxiety, and this is becoming a frustrating and very anxious process for me, let alone for him, which is why he has now handed the phone to me.
“So he’s now high and dry, on the verge of having an epileptic seizure, because he hasn’t had his medication. And he’s super stressed.”
After a bit of back and forth, the call disconnected for some reason. Charlie was called back by one of Kelly’s superiors, whose role is described by NHS 111 as a “non-clinical coach”. The coach agreed with Charlie that he did not need to speak to a clinician, and called a second local pharmacy, Day Lewis, on his behalf.
An audio recording of this conversation, which lasted less than 20 seconds, was played to the court. The pharmacist sounded harried and distracted and like he wanted the coach off the phone as quickly as possible. He said the drug was out of stock. Listening to the recording, it is not clear that the coach requested the correct drug, that the pharmacist heard her request properly or that he took the time to check his stock levels.
Nonetheless, the coach called Charlie back and told him that there was possibly “some sort of supply issue” with his medication. She said he would need to speak to a clinician after all to get a new prescription. She ended the call with the same advice given by her predecessors: “If there are any new symptoms, the condition gets worse or changes or there are any other concerns, call us back.”
At this point in Charlie’s “patient journey”, he effectively gave up on getting any help from medical practitioners. While waiting for a clinician to call back, my mum drove Charlie to his girlfriend’s flat, where he had some leftover medication. He was meant to take 8 mg of Fycompa every day. At his girlfriend’s flat, he found two 6mg Fycompa tablets, which were out of date. Still, it was better than nothing.
Charlie decided to try and make the Fycompa last, taking one on Saturday and intending to take the other on Sunday. By Monday, he assumed, he would finally be able to track down the right meds in the correct dosages.
My mum drove him back home, but tried to persuade him to spend the night at her house. He insisted he wanted to stay at his own place and wind down from a stressful day by getting a takeaway and watching the football. Wales were due to play Denmark at 5pm in the Euros, and Charlie had a soft spot for the Welsh captain Gareth Bale, a former Spurs player. Italy were playing Austria at 8pm, guaranteeing a near six-hour-long stretch of uninterrupted football — heaven for Charlie.
That evening, he called his girlfriend, and they did the crossword together over the phone. He also spoke to my mum on the phone again, promising to come over for a Sunday roast.
At 7.13pm — nearly seven hours after Charlie was promised a call back by a clinician — he was contacted by a London Ambulance Service call handler called Riley. He wasn’t told this at the time, but this phone call is what is formally described by the service as a “comfort call”. It’s effectively an apology and a welfare check. Riley said she was sorry for the delay, explaining there had been “a huge demand on the service”.
“That’s all right, I understand that,” Charlie replied.
They discussed the events of the day, and Charlie told her he had formulated a new plan to head to his campus pharmacy on Monday and get by on what he had until then. He said he no longer needed a call back from a doctor.
“Right,” Riley said. “Have you got any medication? Have you got anything at all left until you can go and get that prescription?”
“Yeah, I have most of the drugs left,” Charlie said, adding: “I’m a little short of one of them, the one that’s tough to get hold of. But yeah, I’ve got enough to get me by until Monday.”
“Right, Charlie, I just want to be absolutely clear — are you happy for me to close the case?”
“I don’t want to waste your time,” Charlie answered.
Riley wound down the conversation, following the same script the others had used. “[Call] any time of day or night if you need us, any new symptoms, anything gets worse, changes, any other concerns — just give us a ring,” she said.
“I will do, yeah,” Charlie replied. “Thank you very much for your help.”
The call ended at 7.20pm. An hour later, Charlie collected his takeaway, a chicken gyro in a polystyrene box, from his front door, returned to the sofa and placed the food on the coffee table in front of him. Then he stopped responding to messages.
When the police broke into his flat the next afternoon, they found his body on the floor between the sofa and the coffee table. His takeaway was still on the coffee table, uneaten.
Much of the inquest felt like a complex, legally fraught exercise in passing the buck. Almost every IP started and ended their evidence by offering their condolences. But almost no one seemed prepared to accept that they had fallen short. An oversized photo of Charlie, with a straggly ginger beard, a big grin and smiling dark brown eyes, was propped on an easel in the corner of the courtroom.
One of the most difficult things we discovered during the inquest was that there was no need for Charlie to desperately seek a prescription in the final 48 hours of his life. We only learnt after his death that, in the UK, individuals have the right to request an “emergency supply” of medication from a pharmacist even without a prescription. This fact was not relayed to Charlie or my mum by any of the health professionals they asked for help from that weekend.
Mona Johnson, clinical director of NHS Pathways, the software used by all NHS 111 service providers and some 999 ambulance trusts to triage calls, gave evidence on behalf of NHS England through a video link. With neat brown hair tied back, dark-rimmed glasses and piercing blue eyes, she came across as clear, competent and a little scripted. She said Charlie’s predicament was not uncommon.
In the previous 12 months, there had been approximately 28 million triages in the NHS Pathways system, of which about one million related to an emergency supply of medication. But she said patients were not informed of their right to an emergency supply because of fears they might misuse the system. “Access to controlled medicines needs to be very tightly controlled,” she offered as an explanation. “That is why [the emergency supply route] is not widely known about or advertised or put into the referral language for the NHS Pathways users to remit to patients.”
Johnson seemed reluctant to admit anything had gone wrong at NHS 111 and, instead, suggested the pharmacist could have done more to help Charlie on Saturday. When asked whether the fact that Charlie was not called back within two hours by a clinician indicated the system had not worked as designed, she demurred. “No,” she said, “that reflects the service pressures more broadly.”
She did make one important concession at the end of giving her evidence. The coroner asked: “I wonder when NHS England looks back at the totality of what happened to Charlie . . . is it your assessment that ultimately the system worked?”
“It is clear from the outcome that the overall service delivered to the patient in its entirety failed,” Johnson replied. NHS England would examine this case in particular, she added, to assess how it could improve the safety of patients with conditions similar to Charlie’s.
Other troubling details emerged at the inquest. The receptionist at the GP surgery, who interacted with Charlie the day before his death, came across as overrun by his workload and, at times, disdainful of the human beings on the other end of the line. Dressed in a grey jumper and jeans, he told the coroner that on Fridays he typically answered “hundreds” of phone calls, but said it was very unlikely he would have forgotten to respond to a morning call from Charlie.
In terms of how he triaged patients, he said every caller was treated the same. However, if someone called in and was “adamant” about the urgency of their situation, they might be able to argue their way into a GP’s calendar before 11am. Anyone calling after that was unlikely to be dealt with that day. Prescription requests were unlikely to ever be considered urgent.
Next was the pharmacy, Superdrug. The pharmacist Charlie encountered there was a locum, or temporary replacement, on his first-ever shift at the Camberwell branch. The assistant working that weekend was also new. Neither of them knew how to access the computer systems at that branch. Instead of admitting he could not access the system, the pharmacist repeatedly told my mum and brother that nothing had come through from NHS 111. He also failed to inform them that the pharmacy did not even have the medication Charlie needed in stock for at least 90 minutes.
In the evidence she gave, my mum said the pharmacist’s actions remain a source of great anguish. “If he had told us at 10.45am that he could not open his computer and access the system . . . we would not have spent the whole morning stood outside Superdrug in Camberwell, begging for medication from NHS 111. We would have avoided that build up of stress and anxiety which was a massive trigger for Charlie. He also didn’t tell us that he didn’t have the medication. That man . . . wasted [Charlie’s] last morning on earth.”
Another issue that came to light during the inquest was NHS 111’s handling of the case. Charlie was ascribed different priority levels by the service’s call handlers. From the offset, it seemed apparent that the call handlers — or the scripted prompts they were following — could not fully address the needs of patients with conditions that can suddenly deteriorate, like epilepsy, diabetes, asthma and heart conditions, among others. Ending every call with so-called “worsening advice”, directing Charlie to call back if his “symptoms” got any worse, was ludicrous. Charlie was either fit and healthy, or suddenly seizing. There was no halfway point. The idea he would have been able to call back while suffering a grand mal seizure was absurd.
After Charlie interacted with Kelly and the non-clinical coach, he was transferred into a queue run by the London Ambulance Service to speak to a clinician at “priority level four”. This meant he should have been called by a clinician within two hours. Charlie was not considered a higher level of urgency because he seemed fine at the point of calling. He wasn’t having difficulty breathing; his heart rate was normal; he was merely, from the services’ perspective, seeking a repeat prescription. Neither the individuals he was speaking to, nor the tree diagrams that determined his priority level, seemed to compute that being undermedicated presented a threat to his life.
Speaking at the inquest, Michelle Dady, a representative for the London Ambulance Service, said that even when the queue of patients waiting for callbacks was reviewed by its clinicians, Charlie was unlikely to have been flagged as urgent, as “the patient had no symptoms or worsening conditions or any changes in any way”. “We had to prioritise those in immediate need,” she added.
But she said that if her service had been made aware that Charlie had been waiting since 10am, had no access to medication and was isolating due to Covid, he would likely have been upgraded to a “priority level two”, which designates a call back within 30 minutes. The implication was the NHS 111 call handlers had not passed on enough information.
The inquest finished 12 days before Christmas. Mooyaart, the coroner, said he wanted time to go over more than 100 pages of notes before delivering his verdict. In the interim, I started to do some research to assess how unusual Charlie’s predicament had been. Was his just a freak case involving a series of unfortunate mishaps? Or were there potential flaws in the systems governing how patients are prioritised?
Between 2019 and today, I found 20 “prevention of future death” reports issued by coroners in England and Wales raising concerns about how patients were triaged by NHS 111, and various ambulance services and hospitals. There was one 37-year-old patient who requested an ambulance, after taking an overdose of a substance at a level that was at least 50 times more than the lowest fatal level. NHS Pathways assigned him a “category 3” patient, which meant he was not seen for an hour. He was in cardiac arrest by the time an ambulance got there. The coroner noted NHS Pathways did not differentiate between types of drugs or chemicals ingested in overdoses, so they were all assigned the same rating.
There was a 75-year-old patient, who spent seven hours seeking medical help after becoming seriously unwell. In that time, the man and his wife spoke to a GP’s receptionist, three call handlers, one nurse and two doctors before finally being assessed in person at 9pm. But he declined to go to hospital, with the coroner noting he was likely “exhausted and almost beyond caring when he declined admission in the evening”. He collapsed during cardiac arrest just after midnight. The coroner found that the patient’s journey was “slow and inefficient” and questioned why the patient was directed to NHS 111 at all.
Then there was the case of a 16-year-old girl, Hannah, who became unwell with severe stomach pain and vomiting. Her parents called NHS 111, as they did not wish to overburden 999, the UK’s emergency service. After speaking to two call handlers over the course of three hours, the parents were eventually advised to take their daughter to A&E. But her condition worsened considerably en route, and she entered cardiorespiratory arrest in the car. She was declared “brainstem dead” days later, according to the coroner’s report.
The coroner in this case noted the public were potentially “being misled over the role and capability of the 111 service”. She added: “There is little clarity or understanding by the public that [the service] is based on following and completing an algorithm by individuals who have no need for any qualification in healthcare and who will only receive a short training programme after they are employed. [The] parents indicated that if they knew this, they would have opted to ring 999 and the outcome would have been different.”
The coroner also criticised NHS 111 for “misleading” the public by calling its call handlers “health advisers”. This title, she said, “implies professionalism which is untrue given their underlying skills and unsubstantiated given it is their role to complete an algorithm”.
The coroner’s report was sent directly to the chief executive of NHS England. The public body’s response stated that “the term ‘health advisor’ is predominantly an inward facing description to align with the service specification and with regard to career progression”.
One month after the inquest concluded, we were recalled to Southwark Coroner’s Court to hear Mooyaart’s verdict. It was a glacial January afternoon, and I felt far more emotional on my way there than I had during the inquest week in December. Before, I had been in “reporter mode”, compiling my own dossier of 92 pages of notes and annotated bundles of legal documents. But verdict day felt different. I was on tenterhooks, for Charlie.
I walked there from my office in Blackfriars, crossing Southwark Bridge and taking a left on to Union Street. There, I paused, momentarily struck by a rush of nostalgia. This road used to be the halfway point between Charlie’s office and mine, and there stood a restaurant, Lupins, and a café where we occasionally grabbed lunch.
Once I reached the courthouse, I signed in at the now familiar lobby and joined my family in the waiting area. Just after 2pm, we were ushered into court. Mooyaart entered, took his seat and began his discourse with the forewarning it would likely take at least 90 minutes. My stomach lurched.
From the offset, Mooyaart seemed at pains to be considerate and fair towards all parties. He was also touchingly kind, within the confines of such a formal process. He noted how he had watched a video of Charlie provided to the court in lieu of a eulogy. “I heard this softly spoken and gentle young man describe how he undertook a bachelors in politics,” he said, “then worked for a disability charity and became passionate about helping people live, learn and work as independently as possible. I got the impression I would have liked to have met Charlie.”
He also said that Charlie was not above criticism. “We must acknowledge that Charlie had ultimately left it a little late,” he said, noting my brother’s intent to collect his medication on the day it was due to run out was “cutting it fine”. But, he added: “He should, nevertheless, have been able to rely on pharmacy and NHS services to keep him safe over the next 48 hours. His situation was the same as any other that needed their medication urgently, and yet he did not get it.”
Mooyaart ultimately found there were “a significant number of failures that arose and these conspired to likely contribute to his death”. These failures included the GP practice not escalating Charlie’s request for a prescription; the pharmacist not being upfront about being locked out of his systems and being slow to communicate his lack of stock, and for failing to contact other local pharmacies or direct Charlie to A&E; the NHS 111 call handlers failing to register the urgency of Charlie’s situation; and the London Ambulance Service failing to get a clinician on the phone to Charlie within the expected two-hour timeframe.
While summarising Charlie’s final hours, Mooyaart became emotional. “Charlie was called at 13 minutes past seven in the evening when all but a handful of pharmacies would have been closed, and by a health adviser, not a clinician,” he said. “Charlie had acquired a lower, out-of-date dose of Fycompa. At this point, exasperated, he had resigned himself to giving up that night. He had a take-out, and the football, and tried to relax. That evening he seized —” Mooyaart paused to compose himself “— and passed away. Despite making multiple attempts over two days to get medication, the system missed many opportunities to better keep him safe.”
Mooyaart issued a Prevention of Future Deaths report to NHS England — a rare document issued in less than 2 per cent of inquests — urging the public body to consider the risks posed to other patients with “cliff-edge conditions”. This is a term coined by my mum during the proceedings to describe individuals with medical conditions that can suddenly deteriorate, which many of the expert witnesses agreed was a helpful phrase.
The report stated Charlie’s official cause of death as Sudden Unexpected Death in Epilepsy (Sudep), although it added that this was “likely contributed to by his lack of medication, despite his efforts to obtain it over the course of two days”. Mooyaart noted while delivering his verdict: “There are other cohorts of similar patients who might similarly be vulnerable in future to not being appropriately identified, prioritised and advised.”
My parents are preparing a civil claim to hold several parties to account. NHS England is due to respond to the coroner’s report in the next month outlining what, if any, changes it will implement.
We got some of the answers we sought. Charlie’s death was avoidable. His story reminds me of the JB Priestley play An Inspector Calls, which examines collective social responsibility through the lens of the suicide of a young woman. By the end of the play, it becomes clear that an entire multigenerational family is at fault. In Charlie’s case, it was various arms of the National Health Service. The only positive to come out of losing him is that, maybe, the systems will improve from here. Then his death would not have been in vain.
Once the hearing finished, my family headed to a nearby pub to raise a toast to Charlie. The oversized photo of him that had looked out over the inquest was propped up at the head of the table. A pint of Guinness placed by chance near the photo created the strange illusion that he was with us. I had a gin and tonic, shared some pork scratchings and several packets of crisps, then rushed to collect my two older children from after-school club.
I didn’t talk to the kids about the verdict, as I didn’t see the need. But sometimes, they just seem to pick up on things. A couple of evenings later, as we headed back home from school, the night sky was unusually clear. We were chatting about the usual — what they had for lunch, who they played with that day — when my five-year-old daughter paused on her scooter and stared upwards.
“Mum, is Charlie in the stars?” she asked, out of nowhere.
We are not a religious family, and I wasn’t quite sure how to answer. I stumbled, saying something like, “I’m not sure, but it’s a nice thought. It’s OK if you want to think that.”
She fixed her eyes on a low-hanging star, shining brighter than all the others. “He is mum. He’s in that one there. Hello Charlie!”
“Hello Charlie!” the three of us called out together.
If you have been affected by the issues raised in this article, UK charity Sudep Action can provide information on reducing epilepsy risk, as well as bereavement support.
Madison Marriage is the FT’s special investigations editor. If you would like to share information on this story, please email her at madison.marriage@ft.com
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