NEWS
18/02/2018 10:42 GMT | Updated 18/02/2018 15:02 GMT

Medical Cannabis Licence Urged For Six-Year-Old With Rare Form Of Epilepsy

Alfie Dingley currently experiences up to 20 or 30 seizures a day.

The government has quashed hopes that a six-year-old suffering a rare form of epilepsy could be able to get his condition under control using cannabis-based medication.

The Home Office said the drug “cannot be practically prescribed, administered or supplied to the public”, meaning Alfie Dingley will not be granted a licence to take the drug.

Alfie Dingley’s epilepsy, PCDH19, triggers multiple serious seizures – at one point he had 3,000 seizures and 48 hospital visits in a year.

In a statement, a Home Office spokesman said: “We recognise that people with chronic pain and debilitating illnesses are looking to alleviate their symptoms.

“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.

“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.”

Last September, the now-six-year-old travelled to the Netherlands where he was prescribed a cannabis-based medication prescribed by a paediatric neurologist, and saw the number of seizures he suffered reduced, as well as their severity and duration.

Members of the all-party parliamentary group (APPG) on drug policy reform called on the Home Office to issue a licence for Alfie to continue taking the medication, which he is currently not permitted to have in the UK, the Press Association reported.

His grandmother, Maggie, said: “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.

“We want the people who have the power to give him this gift to put themselves in the position of Alfie’s family, to think creatively and with open minds and to find a way forward.

“Above all we want compassion to find a way round inflexible rules.”

Alfie currently experiences up to 20 or 30 seizures a day, but with the Dutch cannabis medicines, it is expected that this would reduce to around 20 s a year.

The seizures can gradually be controlled in UK hospitals, but over time it is likely he would be institutionalised with psychosis and die prematurely.

He stayed with his parents in a holiday camp in the Netherlands to receive the life-saving treatment, but without medical insurance in the country they had to return home.

Crispin Blunt, co-chair of the APPG, said: “It would be heartless and cruel not to allow Alfie to access the medication he needs to make his life as seizure-free as possible and to keep him out of hospital.

“Parliament really must look at reforming our laws to allow access to cannabis for medical purposes, which has huge public support.

“Right now, however, the Home Secretary can grant a special licence for Alfie to get the drug he needs.”