1. ITV Report

Medical cannabis oil trial 'being considered' by government to help six-year-old with severe epilepsy

  • Video report by ITV News political correspondent Emily Morgan

A trial using cannabis oil to help a six-year-old boy with a rare, severe form of epilepsy is being considered by the government.

Alfie Dingley suffers 20 to 30 seizures each day - but his parents say that during a five-month visit to the Netherlands, where they could be legally prescribed cannabis oil to treat him, they only occurred every 27 days.

They also reduced in severity and length.

Until now, the Home Office has refused requests to allow them to treat him with the substance at home in the UK - but on Wednesday, a spokesman confimed that the government had proposed a three-month trial for Alfie.

His mother, Hannah Deacon, said she believed it was the right thing to do.

Without this medication, we know that he will be going back to having steroids every four to 10 days.

And we know this will cause him to have psychosis, or he will have a heart attack, or his organs will fail and he will die. We know that.

So we feel that this is a sincere offer because they want to help us.

He is a six-year-old little boy and he deserves to be safe, and well, and this will help to be safe and well. And I will not stop until he has what he needs.

– Hannah Deacon, Alfie's mother

It comes after a long campaign by Alfie's parents, frustrated by the Home Office's insistence that cannabis oil - specifically, the illegal psychoactive component THC - could not be prescribed.

Cannabis may form part of the trial. Credit: PA

Ms Deacon described her son's seizures as "terrifying."

"I cry every time he has a seizure - so does his dad," she said.

"He goes purple, he can't breathe, he's screaming for me to hold him and tell him... 'Mummy help me, mummy help me'.

"It's so awful - it's the worst thing I've ever experienced and it was happening again and again and again."

In September, they took him to the Netherlands where a paediatric neurologist prescribed cannabis oil, which they paid for for five months.

Ms Deacon said it had been a "miracle".

Twenty-seven days where he could play with his sister, 27 days where I could be not just a full-time carer.

It was a miracle.

There's still room to go up on the dose of CBD, there's still room to go up on the THC. What if we could go two months?

– Hannah Deacon, Alfie's mother
Alfie's parents says his seizures reduced in frequency, length and severity during treatment with cannabis oil. Credit: ITV News

Policing Minister Nick Hurd has since met with the family to discuss options.

A Home Office spokesman said the government had "a huge amount of sympathy" for the situation that Alfie and his family were dealing with.

"The Policing Minister wants to explore every option and has met with Alfie's family to discuss treatments that may be accessible for him," he said.

"No decisions have been made and any proposal would need to be led by senior clinicians using sufficient and rigorous evidence."

Cannabis oil is currently illegal in the UK, despite being available for medical purposes throughout Europe.