The mother of a severely epileptic boy has vowed to break the law if ministers cannot get her son the medicinal cannabis he needs.
Hannah Deacon has said it is “disgraceful” that the supply of drugs helping her nine-year-old son Alfie Dingley will be stopped in three months.
In 2018, she won a legal battle to get Alfie the specific cannabis oil he needs.
But Hannah, 41, has now been told the Dutch supply of Bedrolite oil will dry up after June 30, when the EU stops taking post-Brexit UK prescriptions.
Alfie, of Kenilworth, Warks, was the first person in the UK to be granted a licence for Bedrolite.
Hannah said: “I’ll fly to Holland and bring it in illegally and we’ll be back to square one. It’s disgraceful the Government is not sorting this out.”
After Brexit, Holland agreed to keep up with its initial supplies of the drug but public health minister Jo Churchill has confirmed that will not be the case without another extension.
She said she was exploring ways “to establish a more permanent solution.”
Labour MP Catherine West is also pressing ministers to sort the problem.
She said: “I remain very concerned about when this agreement runs out.” It is hoped that the flowers used to make the oil can be imported and used to make the drug here.
But last week Hannah got a letter from the Department of Health saying: “It will take time to establish manufacturing capability and for facilities to be set up.”
She said: “They don’t get the urgency. It’s putting a child at risk of death. My son can become seriously ill if he doesn’t get medicine quickly.”
Before Alfie was given Bedrolite, his rare form of epilepsy caused up to 150 seizures a week.
Hannah says she knows of only three children in the UK who can obtain their medicinal cannabis on NHS prescriptions, but at least 40 other families need the specialist drug – and spend up to £2,000 a month trying to procure it.
