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UK: Six-year-old epilepsy sufferer denied medical cannabis given hope of accessing treatment through trial

Alex Matthews-King

The Independent

Thursday 01 Mar 2018

After refusing permit for Alfie Dingley Home Office says clinical trial could be alternative solution

A six-year-old boy with a rare form of epilepsy that causes him to have 30 seizures a day could be given a legal prescription for medical cannabis under a clinical trial, say ministers.

Alfie Dingley was turned down for a licence for the drug this month, with the Home Office rejecting the application on the grounds the drug is illegal and cannot be supplied to the public.

However policing minister Nick Hurd has since met Alfie’s family, said they would “explore every option” to help and added a medical trial could be a possibility, if it were set up by Alfie’s medical team.

This would be the only way to get around existing legislation which classes cannabis as a “schedule one” drug: substances the Government insists have little to no medical value and are most tightly controlled.

Alfie’s epilepsy is currently controlled with powerful steroids. However, these are known to cause psychosis with long-term use and could lead to his early death.

In search of an alternative Alfie’s parent spent five months in the Netherlands paying for a cannabis treatment, which was prescribed by a paediatric neurologist.

In this period his mother, Hannah Deacon, said he was able to go an unprecedented 27 days without a seizure.

“Without this medication, we know that he will be going back to having steroids every four to 10 days,” Alfie’s mother Hannah Deacon said in an interview with ITV News.

“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.

http://www.independent.co.uk/news/health/alfie-dingley-epilepsy-medical-cannabis-seizures-nhs-home-office-clinical-trial-marijuana-a8234391.html

 

 

 

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