The families of people suffering from chronic illnesses are calling on the government to fund more research into medical cannabis.
End Our Pain, which campaigns for the benefits of medical cannabis, is set to deliver a letter to Health Secretary Steve Barclay on Monday, urging him to put aside £1.4m towards research into the drug.
Medical cannabis, which campaigners believe can treat neurological diseases, chronic pain and conditions like epilepsy, was made legal in the UK in 2018.
But to date, fewer than five people have received an NHS prescription, leaving the rest forced to go private for their prescriptions, or even buying drugs on the black market.
Elaine Levy had to sell her four-bedroom home and move into a flat, because of the costs of paying £2,200 every month for medical cannabis to treat her adult daughter’s epilepsy.
“In the end I couldn’t keep up with the mortgage payments, it was like paying more than a mortgage, so in the end I actually did sell my home.
“I’ve made such sacrifices for this, but when you have a child that you see change from being doped up by drugs to a girl who is awake, who now doesn’t need a wheelchair, isn’t always calling ambulances, how can you possibly go backwards?”
The reason NHS doctors are so unwilling to prescribe cannabis-based products is a lack of evidence on the quality, safety, and clinical and cost effectiveness.
Dr Simon Erridge, head of research and access at Sapphire Medical Clinics in London, said: “At the moment in those conditions where we’ve seen the most promise – things like mental health, chronic pain, sleep disorders – we haven’t had that right type of research that can convince regulators and clinicians in the NHS for it to be prescribed on a population basis, across all people with those conditions.
“Those trials which we call randomised control trials, where you either take a dummy sugar pill or a gold standard treatment and you compare medical cannabis with that.”
For Elaine, the lack of that research is what is so frustrating.
She said when he was health secretary, Matt Hancock promised funding would be made available, but in the years since, they have been repeatedly ignored by the government:
“We were promised an observational trail and an randomised control trial, so we could actually help the children who are already on medical cannabis, and also do data for the children who aren’t on it,” she added.
“We have never seen the money, we have never had a meeting since with the government. They have basically ignored us.”
While Elaine lost her home to the fees of getting the medication privately, others take things further, by buying it on the black market.
When Hayley Lanciano’s husband Neil was given weeks to live with incurable brain cancer, she tried to treat his pain by sourcing medical cannabis illegally.
Hayley and Neil Lanciano
“At the time he was struggling to walk, he was struggling to get out of the house, and that was where they told us he only had six to eight weeks left to live so we were desperately clutching at straws wanting to do more and give him some quality of life.”
She added: “You are very isolated you’re on your own. You have to do your own research. You just hope and trust that what you’re buying is what they say you’re buying.”
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In a statement, a spokesperson for the Department of Health and Social Care told Sky News: “We are working closely with partners to establish clinical trials to test the safety and effectiveness of more cannabis-based products for medicinal use to inform future NHS funding decisions.
Neil playing rugby when he was younger
“Licensed cannabis-based medicines are funded by the NHS where there is clear evidence of their quality, safety and effectiveness.
“We are taking an evidence-based approach to unlicensed cannabis-based treatments to ensure they are proved safe and effective before they can be considered for roll-out on the NHS more widely.”
