Medical cannabis campaigners say current rules mean hardly anyone is eligible for free treatment.
ADVERTISEMENTSome patients in the UK say they are “denied access” to medical cannabis by the country's National Health Service (NHS).
The UK legalised medicinal cannabis, allowing the prescribing of unlicensed cannabis-based medicinal products, in 2018.
Hertfordshire resident Fallon Levy, 30, can sit at a table and hold a pen thanks to the cannabis-based medicines she takes to treat a rare form of epilepsy.
Her mother, Elaine Levy, says Fallon could barely speak or move until she began taking medical cannabis. She once had around 200 seizures every month.
"Being taken out for a meal, cinema, bowling, dancing, drama," Fallon said.
"She couldn't do any of that, she'd be in bed with a seizure, or in hospital," Elaine added.
But this new life comes at a price.
Fallon’s medication costs Elaine about £2,000 (€2,300) per month as Fallon can't get her specific medicine from the NHS.
Now, after six years, she's had to sell her home to find the funds.
"You know, we've got probably, I would say realistically, maybe three months left,” said Elaine Levy.
“And I'm not going to be here forever. And what's going to happen when I'm not here? No one's going to help Fallon," she added.
'People deserve to have good treatment'
Levy is not the only parent who has had to opt for private medical cannabis prescriptions due to strict rules, families of patients in the UK say.
There are currently only three licensed medical cannabis products in the UK, available for a fraction of patients with specific conditions such as epilepsy.
There are far more unlicensed products, but it's extremely rare for those to be prescribed by NHS doctors, forcing most patients to turn to expensive private prescriptions.
At a farm in Birmingham, for example, they produce nine tonnes of medical cannabis annually, enough to treat 50,000 people, but not a single gramme is made available to patients through the National Health Service (NHS).
"The reason that medical cannabis does not have as many licensed treatments is that Big Pharma has not invested," said Dr Mikael Sodergren, the principal investigator with the medical cannabis research group of Imperial College London.
"Big Pharma has not invested because they have not been able to see an easy way to protect their investment through intellectual property and patents," he added.
Campaigners say current rules mean hardly anyone is eligible for free treatment.
ADVERTISEMENT"We have lots and lots of children, 37,000 children in this country, with severe intractable epilepsy who are at home all day,” said Hannah Deacon, a medical cannabis campaigner.
“I will stand up for those people, and those people deserve to have good treatment, and those doctors deserve to have the support to prescribe them. And the government just [doesn’t] feel that it's their role. But, of course, it's their role".
The NHS is now calling for more studies, but that's little comfort to families, such trials can take decades.
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