'I don't want anyone else to die': Mother's mission after son unable to access emergency medication

Just over a year later Charlie was dead, failed by the very organisation he had once championed.

The 32-year-old from Camberwell, southeast London, was epileptic and died after he was unable to get an emergency supply of his medication, despite calling NHS 111 repeatedly.

His mother, Henrietta Hastings, is now trying to prevent other people dying "needlessly", like Charlie.

But she's not campaigning to change the law - the law is already there.

Regulations passed in 2012 allows pharmacists to give out emergency supplies of prescription-only medication in specific situations: when there is an immediate need; when a patient was previously prescribed it; and if the dose is appropriate.

But Henrietta says this law is not widely publicised, even though it could save lives.

So, she has created "Charlie Cards", which outline the law. The wallet-sized card will help those, like Charlie, who need emergency access to their life-saving medication, she hopes.

"Hopefully, by knowing what your rights are, by using the card and taking it into a pharmacy, you will get your medication in the quickest possible way," she says.

"We hope it will save lives."

And she's taking the Charlie Cards all the way to the health secretary.

She will be outside the Department for Health and Social Care on Wednesday afternoon, and hopes to hand deliver one to Health Secretary Wes Streeting.

'Cliff-edge conditions'

Charlie spent his final morning begging for a supply of his tablets from his GP, NHS 111 and a pharmacy. At no point did anyone tell him he could access an emergency supply without a prescription.

Eventually, he gave up, driving to his girlfriend's flat where he found an out-of-date smaller dosage of the pills he needed.

He died later that night, after suffering a fatal seizure.

A coroner concluded there were a "significant number of failings that lead to his death".

A prevention of future death report ordered NHS England to review how it helps people in Charlie's situation, with the coroner concluding he was let down across the board - by the NHS 111 service, his GP and the pharmacies.

His mother says NHS 111 kept telling Charlie to call back if his conditioned worsened.

Charlie had a "cliff-edge condition" - he didn't hit any of the NHS 111 criteria for emergency help, but he was at high risk of sudden death if he didn't get his medication on time.

"They kept giving this ridiculous safeguarding advice to call back if you feel worse, but if you are in the middle of a seizure, or if you've collapsed with diabetes, you can't do make that call," Henrietta says.

"Losing a child is the worst thing in the world, but losing a child unnecessarily is ridiculously painful. And I don't want anyone else to lose someone because they've got caught up in some pointless NHS 111 shenanigans.

"I want people to know they can get their meds quickly. I don't want anyone else to die."

Charlie, Henrietta says, had a "strong sense of justice".

He worked for a disability charity and was studying to become an occupational therapist at Brunel University. He told his family he wanted to reduce the barriers for people living with disabilities.

But as Henrietta talks about her son - six-foot-five, "irritable at times when he would drink all your orange juice and take up two sofas", much loved and so missed - it's clear to see who he inherited it from.

A Department of Health and Social Care spokesperson said: "Our deepest sympathies are with Charlie's family and friends in this tragic case, and we thank them for putting in place a legacy for him through Charlie's Cards.

"We consider every prevention of future death report carefully and will respond in due course."

-SKY NEWS