A little boy who suffers from a rare form of childhood epilepsy should be given a medical cannabis licence to help control his condition, MPs have said.
Alfie Dingley’s epilepsy, PCDH19, triggers multiple serious seizures – at one point he had 3,000 seizures and 48 hospital visits in a year.
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 have now 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.”