Kenilworth mother's fight to treat severely epileptic son with cannabis goes on

Six year old Alfie Dingley suffers from a rare from of epilepsy known as PCDH19, which causes him to suffer intense 'clusters' of seizures.

His mother Hannah Deacon took Alfie to the Netherlands in September 2017 to have medical cannabis oil treatment, which she said worked brilliantly.

After being forced to return to Kenilworth on Monday February 12 because of the €4,000 a month costs, Hannah wanted to continue the treatment in the UK, which is currently illegal without a special licence.

But the Home Office has refused to grant the licence, claiming the drug can only be used for research.

Hannah said: "It's just madness. I want to live here near my family and friends.

"I don't see why I should have to travel to another country for this. We will take legal action if we need to and I think we will win if we do.

"His human rights are being affected. We won't stop fighting."

Although Alfie's symptoms have not returned to what they were, Hannah is worried it is only a matter of time before his seizures worsen.

Before he went to the Netherlands for cannabis treatment, Alfie's seizures had to be treated with steroids, which can have serious side effects as they are only recommended for adults.

Alfie will have to go back to steroid treatment if nothing changes.

She added: "He was having drugs on a daily basis. No one knows if steroids will give him brain damage or if they're safe."

Hannah is now calling on people to write to their MPs asking them to campaign for a change in the law.

Following Hannah's plea, Kenilworth and Southam MP Jeremy Wright said he will try and persuade the Home Office to change its mind as he believes there are 'exceptional circumstances' in Alfie's case.

Although cannabis oil can be bought in the UK, it does not contain the active ingredient THC like it does in the Netherlands.

The Home Office said while it recognised people with debilitating illnesses need to alleviate their symptoms, it would not grant a licence for Alfie to use cannabis treatment.

A Home Office spokesperson said: "It is important that medicines are thoroughly tested to ensure they meet rigorous standards before being placed on the market, so that doctors and patients are assured of their efficacy, quality and safety.

"Cannabis is listed as a Schedule 1 drug, as in its raw form it is not recognised in the UK as having any medicinal benefit and is therefore subject to strict control restrictions.

"This means it cannot be practically prescribed, administered, or supplied to the public in the UK, and can only be used for research under a Home Office licence.

"The Home Office would not issue a licence to enable the personal consumption of a Schedule 1 drug."

Anyone wishing to keep informed on Alfie's progress should visit the Alfie’s Hope Facebook page.