Cannabis treatment a step closer for severely epileptic Kenilworth boy after Prime Minister meets family

A licence to allow a severely epileptic Kenilworth boy to have medical cannabis treatment is looking more likely to be granted after the Prime Minister met with his family yesterday (Tuesday) in Downing Street.

Wednesday, 21st March 2018, 11:37 am
Updated Wednesday, 21st March 2018, 12:40 pm
Hannah Deacon with her son Alfie Dingley

Six-year-old Alfie Dingley travelled to the Houses of Parliament with his mother Hannah Deacon, father Drew Dingley and his little sister Annie with a petition asking the government to grant the licence. It had more than 370,000 signatures.

But in an unexpected twist, the Prime Minister Theresa May met with the family and assured them a solution would be found.

Hannah was told that if she applies for a licence through a doctor on 'compassionate grounds', the Home Office will push the process through as quickly as possible without the need for a three-month trial.

Despite this, Hannah said she would only be completely satisfied when she had Alfie's licence in her hand, but said the day was 'very encouraging'.

Hannah added: "We've still got a long way to go. They can't tell us yes or no (on whether a licence will be granted) yet but we're encouraged by the fact we met the Prime Minister at Number 10. That's a good sign she wants it sorted.

"Now we need to find the right doctor to do the application for us - that's going to be the next hurdle. But we've got the Government and the Home Office on our side."

The family were joined in London by dozens of supporters from campaign group End our Pain as well actor Patrick Stewart who is backing Alfie's cause.

Alfie's family has been campaigning for the government to grant a licence to treat his severe epilepsy with medical cannabis treatment

In the morning, the family met MPs and peers in the Houses of Parliament and explained their situation to them.

When they presented the petition outside Number 10 in the afternoon, they were invited in, something Hannah said was 'unheard of'. They were first met by Nick Hurd MP, the Minister for Policing at the Home Office, and Sir Mike Penning MP, a former Minister of Policing himself.

She went on: "We were just sitting down having a chat when the Prime Minister came and introduced herself and said hello.

"It was wonderful. It showed how seriously they're taking this. That's all we've wanted.

Alfie's family has been campaigning for the government to grant a licence to treat his severe epilepsy with medical cannabis treatment

"We feel that having met with the Prime Minister and other people this is now being taken very seriously."

Hannah now hopes to have Alfie's licence granted within the next two to four weeks, but she is still working out which doctor she should approach to make the application for him.

Alfie suffers from a very rare form of epilepsy known as PCDH19, which causes him to suffer intense 'clusters' of seizures.

He is currently treated with strong steroids, which can have serious side effects as they are only intended to be used by adults.

Hannah said an earlier course of medical cannabis treatment in the Netherlands had worked brilliantly for Alfie, dramatically reducing the intensity and frequency of his seizures.

But before yesterday's meeting, the Home Office had said it would only grant a licence after a three-month trial proved the treatment would be effective.