'Four weeks' until decision on medical cannabis licence for severely epileptic Kenilworth boy

A decision on whether a severely epileptic Kenilworth boy will be granted a licence for medical cannabis treatment could be made within four weeks, his mother has said.

Wednesday, 9th May 2018, 3:49 pm
Updated Thursday, 7th June 2018, 10:35 pm
Alfie Dingley, 6, suffers from a severe form of epilepsy. His mother Hannah Deacon is hoping the Home Office will grant a special licence to allow him to be treated with medical cannabis.

Hannah Deacon, the mother of six-year-old Alfie Dingley, submitted the application to the Home Office on Monday April 16.

And after further talks with the Home Office, Hannah said a decision on her son’s future would be made sooner than previously expected.

In a video post on the ‘Alfie’s Hope’ Facebook page, Hannah said the progress was ‘a massive improvement’ and praised the Government’s support of his case.

Hannah Deacon with Alfie

She added: “The Home Office are actually being very good so far. They initially said it (a decision) would take 16 weeks.

“Obviously it’s not going to be done overnight, which is a shame.

“We all know cannabis as a medicine for things like epilepsy is safe and effective. But in this country it’s a Schedule 1 drug.

“We can all say it should be done quicker, but the fact is we are going through the process, which is a fantastic result.”

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

This often puts him in hospital and interferes with his schooling.

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

Hannah has supplemented this treatment with legal cannabis oil, which only contains the chemical CBD as an active ingredient instead of containing the illegal chemical THC.

But Hannah wants to use whole-plant medical cannabis to treat Alfie, and a course of this treatment in the Netherlands last year was very effective in reducing his symptoms.

The Home Office must grant Alfie a special licence for this to happen, but this is not guaranteed.

Despite the uncertainty, Hannah said she is remaining positive about the coming decision.

She added: “The doctors that are supporting us are fantastic - they have no reason to refuse it because we’re jumping through every hoop we’ve been asked to.

“I hope we get a favourable result - if we don’t, we’ll kick up a big storm. We’re good at that.

“I want to give the Home Office a chance to do the right thing.”

Without a licence, the family is looking at a bill of around £25,000 a year to treat him in the Netherlands.