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Boy with rare form of epilepsy denied cannabis oil treatment

Alfie Dingley with his mother, Hannah Deacon
Alfie Dingley with his mother, Hannah Deacon: ‘He’s just a six-year-old boy, he deserves a happy life.’ Photograph: Maggie Deacon/PA

The government has refused to issue a licence for a six-year-old boy with a rare form of epilepsy to be treated with cannabis oil, despite evidence that it has eased his symptoms and support from MPs.

Alfie Dingley, from Kenilworth, Warwickshire, can suffer up to 30 seizures a day. His mother said they had decreased dramatically in number and severity while he was in the Netherlands being treated with a prescribed, cannabis-based medication.

Members of the all-party parliamentary group for drug policy reform urged the Home Office to allow him to use it.

However, the Home Office has ruled out it being prescribed in the UK. The drug, a statement said, “cannot be practically prescribed, administered or supplied to the public”.

“We recognise that people with chronic pain and debilitating illnesses are looking to alleviate their symptoms,” a statement said.

“However, 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.”

In September Alfie and his family stayed at a holiday camp in the Netherlands so that he could take the cannabis oil medication prescribed by a paediatric neurologist.

His mother, Hannah Deacon, said the cannabis dose was very small – just three drops of the oil – but the results had been dramatic: at one point her son went 24 days without an attack.

She told the BBC: “We never imagined how well it would work. He’s just a six-year-old boy, he deserves a happy life. We’ve found something that makes him happy and now we’ve got to take that away.”

The family has returned to the UK to fundraise and lobby for a licence.

Maggie Deacon, Alfie’s grandmother, said they wanted to find a way round inflexible rules. “Alfie has gone from a death sentence to the prospect of a more normal life with school, friends and fun in his own familiar home.”