Hopping out of the front passenger seat, I walked around the car to give my son, Charlie, a hug goodbye.
It was June 26, 2021 and my husband, Richard, and I had just dropped him home. Charlie was looking forward to a relaxing night alone, eating takeaway and watching football.
‘I love you,’ I said. ‘See you tomorrow for a Sunday roast?’ He smiled, then walked off towards his flat.
That was the last time I saw my son. Within just a few hours, Charlie was dead at 32.
From a very early age, Charlie was always telling jokes and making people laugh. He was also a bit of a wind-up merchant to his four sisters, but we all loved him.
At 14, he randomly started getting seizures. He didn’t actually tell anyone except one of his friends at the time because he loved playing rugby, water polo, and cycling and he thought seizures could jeopardise that.
Then it happened one day when he was at home. His sister, Lily, found him on his bedroom floor and ran down to tell me.
We called for an ambulance and he was taken to Barnet Hospital, which is when I was devastated to find out from him that it had been going on for months. Within days, he was diagnosed with epilepsy.
Over the years, Charlie tried at least 10 different types of medication to manage his condition, with little success. As a result, he’d have seizures monthly or even weekly, which resulted in broken noses or teeth, as well as split eyebrows and cheeks.
More often than not, they came on randomly, which I know felt very frustrating for him. But some things like hot weather, exercise, or stress could induce them too.
Then he started on a breakthrough drug called Fycompa that changed everything, aged 30. The seizures slowed right down and never really came on unprovoked anymore.
He was finally in a good place. But it all came crumbling down in 2021.
On Thursday June 24, Charlie received a notification that one of his recent contacts tested positive for Covid-19 so he needed to self-isolate. The problem was, he had planned to travel back to Brunel University of London – where he was studying occupational therapy – on Friday, which was two hours away.
He was going to the campus pharmacy to pick up his repeat prescription, as he would run out of medication on Friday evening. But he could now no longer go due to travel restrictions.
On Friday, Charlie contacted his GP to arrange an emergency refill, but this was never issued. By Friday, he had run out of medication and called me in a panic asking what to do.
Calming him down, I suggested he call 111 because I’d received an urgent prescription from them before. Around 10:30am, he called and the operator told him they’d send it to his local pharmacy, Superdrug.
Nervous that he’d be breaking Covid-19 rules about isolating, he asked if I’d come with him to pick it up. So Richard and I – as well as our grandchild, who we were babysitting at the time – got into a car and drove 20 minutes to meet him at the pharmacy.
Richard and the baby stayed in the car, while I greeted Charlie, who was clearly already fed up with the whole situation. I went inside and was flatly told no prescription had been sent.
For Sarah
Last year, on March 10, we lost our beloved colleague Sarah Whiteley. Sarah was a fantastic journalist; she was Metro’s parenting columnist and a valued member of our first-person and opinion desk.
Sarah died aged 39 from SUDEP – sudden unexpected death in epilepsy. It is thought that every year around 1,000 people die from causes related to epilepsy.
With support from Sarah’s family, Metro is fundraising for two very important charities: SUDEP Action and Epilepsy Action.
Sarah was so incredible at helping other people share their experiences; she was a born storyteller and we hope to do her proud and raise money in her memory.
Charlie ended up calling 111 a further two times – around 11:30 and midday – and even had the 111 handler talk directly to the pharmacist, but they eventually told us there was probably ‘some sort of supply issue’ and that a clinician would need to call us back to see what they could do.
By this point, Charlie was stressed and frightened. Desperate for an alternative to continuing a fruitless search, we went to Charlie’s girlfriend’s flat while she was away in Manchester that weekend to see if she had any spare medication.
We found two expired 6mg pills, but Charlie’s dosage had since increased to 8mg. He decided to try to make them last by taking one each night until he could get to a pharmacy when they opened again on Monday.
Charlie just wanted to go home to relax and calm down, even though I insisted that he should stay with us or I was happy to stay with him. That’s when we drove him home and I hugged him for the last time.
I actually spoke to him a few hours later after I called to check in on him. He told me that the London Ambulance Service had come back to him – a ‘comfort’ caller from 111, not a doctor – but nothing came of it so he was just unwinding by watching football and ordering a takeaway.
The next morning, I messaged and called him but there was no reply. I immediately knew something bad had happened.
By 1pm, Richard and I made our way to Charlie’s flat but there was no reply to our knocks on the door, so we called the police. Once they arrived, they went inside and initially wouldn’t let us follow them.
When we eventually got in, we saw Charlie lifeless on the floor next to the sofa, with his uneaten takeaway on the coffee table. I actually recall a moment where I thought I saw his eyelashes flickering, so I shouted for the police to call an ambulance, but they assured me they had checked and Charlie was dead.
The flickering was caused by a breeze from the open window. I ended up just lying on the floor and holding him, crying.
SUDEP Action
SUDEP Action provide key services for those who have been affected by epilepsy and SUDEP.
They offer free bereavement support to those who have lost a loved one to SUDEP, counselling and assist grieving families during the inquest process.
SUDEP Action is passionate about providing information about SUDEP to help reduce risk to those living with epilepsy, as well as driving research to prevent future deaths.
You can donate to SUDEP Action here
It was the worst day of my life.
When Charlie’s body was released, we had a funeral for him. The church was filled with an outpouring of grief and love.
In the ensuing months, we pushed for an inquest to identify exactly what went wrong. I even gave evidence and said that the Superdrug pharmacist ‘wasted’ my son’s last day on earth, which I still stand by.
Heartbreakingly, we also heard recordings of conversations Charlie and I had with NHS 111 where he pleaded with handlers: ‘It’s an emergency, do you understand?’
The inquest concluded in February this year and the coroner highlighted ‘a significant number of failures’. Notably that the GP didn’t escalate the emergency prescription, that the pharmacist didn’t communicate that he was actually locked out of his system so couldn’t complete the 111 request, and that he only had two of the three drugs that Charlie needed.
The biggest thing I was shocked to learn throughout this whole process is that certain medications can be requested in emergencies without a prescription – so long as you can prove you need it and you’ve previously been prescribed it.
Charlie could’ve done that and then received five days of medication to tide him over – but not once was this mentioned to us on either day.
Charlie could’ve been saved. If my son hadn’t been failed by so many people, he’d be sitting with me now watching the tennis.
This is why – with the help of SUDEP Action – I have created the Charlie Card (Get your Charlie Card from info@sudep.org) which is an information card you can take to a pharmacist that quotes the Human Medicines Regulations Act 2012 in order to help get emergency medicines.
And we’re taking our fight to Downing Street now because we want Wes Streeting to make this knowledge more readily available.
I want people to understand that Charlie’s death was preventable.
My loving and funny son could still be here if we knew this information.
As told to James Besanvalle
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