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MPs call for boy with epilepsy to be given medical cannabis licence MPs call for boy with epilepsy to be given medical cannabis licence
(about 2 hours later)
MPs have called on the Home Office to issue a medical cannabis licence to a boy whose rare form of epilepsy improved after taking the drug.MPs have called on the Home Office to issue a medical cannabis licence to a boy whose rare form of epilepsy improved after taking the drug.
Six-year-old Alfie Dingley, from Kenilworth in Warwickshire, suffers up to 30 violent seizures a day.Six-year-old Alfie Dingley, from Kenilworth in Warwickshire, suffers up to 30 violent seizures a day.
His parents want to treat him with medical cannabis oil, which is illegal in the UK.His parents want to treat him with medical cannabis oil, which is illegal in the UK.
In September, Alfie went to the Netherlands to take a cannabis-based medication. Alfie's mother said "you've got to fight for your kids, I want to know that I've done everything I can".
The medication, which was prescribed by a paediatric neurologist, saw his seizures reduce in number, duration and severity. Alfie went to the Netherlands to take a cannabis-based medication in September.
Members of the all-party parliamentary group (APPG) on drug policy reform have now called on the Home Secretary Amber Rudd to issue a licence for Alfie to continue taking the medication, which he is currently not permitted to have in the UK. His mother, Hannah Deacon, said while there the medication, which was prescribed by a paediatric neurologist, saw his seizures reduce in number, duration and severity and he went 24 days without having a seizure.
Alfie's grandmother Maggie said the treatment in the Netherlands meant "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". At one point while in the UK Alfie had 3,000 seizures and 48 hospital visits in a year.
"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," she added.
"Above all we want compassion to find a way round inflexible rules."
At one point Alfie had 3,000 seizures and 48 hospital visits in a year.
His seizures, which can number up to 20 or 30 a day, can gradually be controlled in UK hospitals, but over time it is likely he would be institutionalised.His seizures, which can number up to 20 or 30 a day, can gradually be controlled in UK hospitals, but over time it is likely he would be institutionalised.
With the Dutch cannabis medication, it is estimated that Alfie would have about 20 seizures a year. "It's very rare and very aggressive, there's only nine boys in the world with Alfie's condition," Ms Deacon said.
"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."
Ms Deacon said Alfie's cannabis dose was "very small" and he was taking three drops of the oil.
Members of the all-party parliamentary group (APPG) on drug policy reform have called on the Home Secretary Amber Rudd to issue a licence for Alfie to continue taking the medication - which he is currently not permitted to have in the UK.
Alfie's mother said the steroids he takes in hospital could eventually cause his organs to fail if he keeps taking them at the rate he is.
"He doesn't know any different, he's had a very traumatic life. He's held down and injected".
With the Dutch cannabis medication, it is estimated Alfie would have about 20 seizures a year.
He stayed with his parents in a holiday camp in the Netherlands to receive the treatment, but without medical insurance in the country they had to return home in January.He stayed with his parents in a holiday camp in the Netherlands to receive the treatment, but without medical insurance in the country they had to return home in January.
Conservative MP Crispin Blunt, co-chair of the APPG, said Ms Rudd "can grant a special licence for Alfie to get the drug he needs".Conservative MP Crispin Blunt, co-chair of the APPG, said Ms Rudd "can grant a special licence for Alfie to get the drug he needs".
"It would be heartless and cruel not to allow Alfie to access the medication," he added."It would be heartless and cruel not to allow Alfie to access the medication," he added.
"Parliament really must look at reforming our laws to allow access to cannabis for medical purposes, which has huge public support.""Parliament really must look at reforming our laws to allow access to cannabis for medical purposes, which has huge public support."
A Home Office spokesperson said: "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. A Home Office spokesperson said: "We recognise that people with chronic pain and debilitating illnesses are looking to alleviate their symptoms.
"The Home Office would not issue a licence to enable the personal consumption of a Schedule 1 drug'." "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."