SUDEP Action

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Family believe Charlie should still be alive today


The inquest into the death of Charlie Marriage will take place from June 24-28 at Inner London South Coroners Court, Southwark.

Charlie was halfway through a two-year Masters degree in occupational therapy, and looking forward to a career within the NHS when he died in 2021. He’d had epilepsy since he was 14.

His family believe that he should still be alive today.

On Thursday 24 June 2021, he received a message from NHS Test & Trace telling him to isolate. He took this seriously, but realised he would be without any medication that weekend as he couldn’t travel to collect. He called his GP first thing Friday morning and explained the situation. He asked for an emergency supply to cover him until the pharmacy reopened on Monday and a friend could pick up his medication.

The GP admin staff told him the GP would call him back in an hour. After two hours and no call, he called again. He was put on hold and then cut off. He called again and was told someone would call him back. When no one called, he reached out again – to be told he had to make an online request before the GP would issue an emergency prescription. Charlie did this but the surgery closed for the weekend and he still had no medication.

He called NHS 111 believing they would help him to access his medication. In total, he called them five times. However, his mother Henrietta says the system failed to recognise his high risk of SUDEP because he had not had his medication for 36 hours.

She said: “Every time NHS111 made him repeat the full sorry tale, and letter by letter the name and dose of the missing medication. They referred him to a pharmacy which eventually told him they didn’t have his medication in stock.  NHS111 told him at noon he would get a phone call from a doctor shortly. At 7.30pm  in the evening he received a call from an NHS111 call handler apologising for the delay and asking if he still wanted a doctor to call him. He said no. He had lost all hope they would get him his medication, he was alone, he was isolating on the NHS instructions, and had zero expectation that a doctors call would help that night. Ninety minutes later Charlie died from SUDEP during a seizure.”

Charlie’s seizures had been under control. Amongst the many questions Henrietta and her family have been left with are, why couldn’t NHS111 get a supply of emergency medication to him?

And why – if the GP had access throughout the afternoon to prescription requests – didn’t they issue Charlie with his prescription?

Henrietta hopes the inquest into her son’s death will result in changes and improvements to the way NHS111 operates – with anyone contacting the service because they have no epilepsy medications being treated as a category one priority.

If you have epilepsy, and have had problems dealing with NHS111 Services – not limited to medication issues – let us know at [email protected]