Bereaved mother says NHS111 still putting lives at risk
His mother Henrietta says the systems in place – meant to protect her son – failed him. She believes there are still major problems with NHS111, which are putting the lives of others at risk.


Charlie Marriage died from SUDEP in June 2021 after spending two days trying to get his anti-seizure medication via NHS 111, his health centre and local pharmacy.
Charlie (pictured above with his sister Scarlet) had received a message from NHS Test and Trace on the Thursday before his death telling him to self-isolate due to possible contact with Covid-19. Realising he would be without anti-epilepsy medication for the weekend, he and his family tried desperately to get an emergency supply of medication.
His mother Henrietta says the systems in place – meant to protect her son – failed him. She believes there are still major problems with NHS111, which are putting the lives of others at risk.
“The NHS111 algorithm instructs the call handler to assess the heath condition of the caller at the time they are making the call. The problem with this, which anybody who knows anything about epilepsy will know, is that when you call to say, ‘I might have a really bad seizure’ because I haven’t got my medication, at that point you’re going to seem normal, but at any second you could have a massive seizure.”
Charlie first called NHS111 at 10.30am in the morning which meant he should have been helped within two to four hours. However, every time a patient calls the service back the clock starts afresh. Because Charlie contacted the service again at 1pm, the original timeframe for helping him disappeared off the system and got pushed back.
“This system just doesn’t work,” said Henrietta.
“The level of priority they gave Charlie was Level Four out of seven – one being the highest priority. The distressing thing about this is if I had another child with epilepsy who, for any reason, ran out of meds, and we called 111, that person could be left to die without meds just like my son was. Nothing has changed in three-and-a-half years.”
The GP did not call Charlie back. Charlie managed to get hold of a couple of out-of-date tablets of his medication Fycompa from his girlfriend’s flat, but this was a 25% reduction on what he should have taken.
Henrietta said: “NHS111 has to change the way it triages people and the way it claims to help people with prescribing. One of the things we found out afterwards – and this is so important to other people with epilepsy – is that 20-odd years ago, a piece of legislation, the Access to Medications Act, was passed to make sure that people who needed emergency medication could have access to it at weekends, out of hours, through a pharmacist, without a doctor. If you are on repeat medication, providing it is not for controlled drugs, you can go to a pharmacy with some evidence of your repeat status and ask the pharmacist to give you an emergency supply to tide you over until the GP opens. And they have to give it to you by law. It is your right.”
Henrietta is confident Charlie’s outcome would have been different; had they been told about this by NHS111.
She said: “If we’d phoned 111 and they said, look, you don’t need us, we’ll just put you through a whole load of hoops you don’t need to go through, phone round, find a chemist that’s got Fycompa, go there, take your phone with you so you can show them it’s on repeat for you and they can issue it for you under the Access to Medicines Act, giving you enough to get you by until Monday. If they’d said that to us that’s exactly what we would have done and I’m quite sure by lunchtime we would have got the medication Charlie needed and he would have taken it – and I’d be off somewhere with him this afternoon, not doing this with you.”
Henrietta said of working with SUDEP Action; “We got a brilliant result from the Coroner who is sending a prevention of future deaths report to NHS England about the problems with NHS111. We could not have coped with the awful inquest process or navigated our way to this result without the help of SUDEP Action. They have been incredible, especially Jane, Julia and Rob. Thank you all so much and we look forward to working with you in the future to ensure the Coroner’s recommendations are fully implemented.”