Government refuses boy, 6, medical cannabis to treat his severe epilepsy
A FAMILY’S pleas for a six-year-old boy to be allowed to take a cannabisbased medication to treat his epilepsy have been rejected by the Home Office.
Alfie Dingley has a severe form of the condition called PCDH19, which triggers multiple serious seizures and could end his life prematurely. In one year he suffered 3,000 seizures and was admitted to hospital 48 times.
Maggie Deacon, Alfie’s grandmother, has described the condition as “a death sentence” as the amount of steroids needed to treat it can eventually lead to psychosis and organ failure.
Last September, Alfie, from Kenilworth, Warks, went to the Netherlands to try a cannabis-based medication prescribed by a paediatric neurologist, which reduced his seizures in number, duration and severity.
MPS on the all-party parliamentary group (APPG) on drug policy reform have called on Amber Rudd, the Home Secretary, to issue a licence for Alfie to take the medication, which he is currently not permitted to have in the UK.
Yesterday, however, the Home Office said the drug “cannot be practically prescribed, administered or supplied to the public”.
A spokesman said: “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.”
Some forms of cannabis oil treatments are allowed in the UK with a special licence from the Home Office, but not if they contain the compound tetrahydrocannabinol (THC), which is the element in cannabis that creates a
“high” in users.
In the Netherlands, Alfie was prescribed Bedica and Bendrolite, which contain small amounts of THC. With these drugs, it is expected that Alfie would have around 20 seizures a year.
Alfie and his parents stayed at a holiday camp in the Netherlands but, without medical insurance cover in the country, they have had to return home.
Hannah Deacon, 38, Alfie’s mother, cares for her son full-time and Drew Dingley, 39, her partner, is a landscaper and gardener.
She said if they cannot get the drugs through the NHS it will cost around £20,000 a year to travel to the Netherlands four times for treatment. “The NHS should be paying for that,” she said. “We are saving the NHS £100,000 a year by him not being in hospital.”
Crispin Blunt, a Tory MP and APPG co-chairman, 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.”