Hannah Deacon and son Alfie Dingley (Image: Rowan Griffiths/Daily Mirror)
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Medical cannabis has been prescribed to just three children since it was legalised three years ago.
Families blame lack of NHS funding and legal hurdles despite government vows to make it widely available.
They say the situation would be helped by axing a law that says cannabis grown here cannot be sold as medicine in the UK.
Hannah Deacon reckons the change could be worth £2billion for the UK economy and create 97,000 jobs.
Her severely epileptic son Alfie Dingley, nine, became the first to get an NHS prescription from a specialist doctor for a cannabis drug three years ago.
But she still has to source it from Amsterdam – and only two other children have since had NHS prescriptions.
Do you think medicinal cannabis should be prescribed? Join the debate in the comments
Alfie's cannabis oil medicine
Another 100 families spend up to £2,000 a month for private doctors, while at least 1.4 million people buy cannabis illegally for conditions such as multiple sclerosis.
Hannah, 41, of Kenilworth, Warwicks, said: “It’s disgraceful doctors have to advise patients to use the illegal black market because they cannot prescribe.”
Last week she wrote to PM Boris Johnson demanding a meeting. Her campaign group Maple Tree Consultants says Britain exports 97 tons of medicinal cannabis a year – 45% of the world market.
Hannah has written to Boris Johnson
It wants reforms so GPs and not just specialist doctors can prescribe it, and growers can harvest leaves and flowers for use here, not just stalks and seeds.
Maple Tree said: “Businesses are desperate to supply domestic patients.”
Its proposals are supported by MPs and 14 industry bodies.