Doctors are not prescribing medical cannabis to their patients even though the government has legalised the drug for medicinal purposes.
The NHS has only prescribed medical cannabis to less than five patients despite specialist doctors having the power to distribute it to everyone.
Campaigners are now urging ministers to review the issue as people who are in need of medical cannabis are being forced to pay privately or are missing out altogether.
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However, the government says further evidence of the safety of medical cannabis is required before it can be used more widely.
Ministers changed the law around medical cannabis in 2018, meaning that the unlicensed drug can legally be used for medication purposes.
Medical cannabis is a broad term for any sort of cannabis-based medicine, such as CBD or hemp seed oil.
The whole cannabis plant is used when developing medical cannabis, including the THC compound which makes people feel high.
According to campaigners, doctors do not have enough knowledge around medical cannabis so are refusing to prescribe the medication.
With specialist doctors refusing to prescribe medical cannabis, people now have to ask NHS England directly for the drug, but they almost always reject the claim.
People with epilepsy can be prescribed licensed cannabis drugs but these medications do not contain the whole plant, such as Epidiolex.
Alfie Dingley, 11, was the first individual to receive medical cannabis via the NHS to help treat his epilepsy.
Alfie’s mother, Hannah Deacon, fronted the campaign which saw the drug become legal for people with health problems.
Since using medical cannabis, Alfie has not had a seizure in three years. Every month, he is prescribed 13 bottles of Bedrolite, which otherwise would cost his mother £225 per bottle.
Hannah said: “Back in 2018, she felt like she had changed history, opening up the treatment to people with a wide range of debilitating conditions including chronic pain, insomnia and neurological conditions like tourettes.
“I think they changed the law to take the wind out of my sails because the campaign was very effective.”
Dr David McCormick, Senior Paediatric Consultant from King’s College Hospital in London, said: “It was disingenuous of the government to suggest in 2018 that NHS prescribing was ready to take place.
“Parents were clamouring at our door, or phoning all the time, as they believed we were able to prescribe and that was not the case.”
He added: “The message went out, ‘doctors can now prescribe cannabis products’ and that put us in a difficult position, because in truth we need to apply for that to be approved by NHS England.”
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The only way to legally purchase cannabis products before 2018 was to buy them when travelling abroad.
Now, people can pay for private prescriptions from specialist clinics, but they do come at a high cost.
In the UK, there are more than 30 private prescribing centres, which have registered roughly 140,000 prescriptions between November 2018 and 2022.
Jasper Salisbury-Jones, 13, has been receiving private prescriptions to help him manage his rare form of epilepsy.
His mum, Alice Jones said: “By the time he was 11, he was having about 800 seizures a day, which sounds ridiculous but that was where we got to.
“The doctors did say we were out of options, so the expectation was that eventually a seizure would kill him.”
Before turning to medical oil, Jasper had used nine other medicines, underwent brain surgery and had an electrical implant put in his chest in a bid to stop his fits. However, all of these attempts failed to stop his seizures.
In a final attempt to stop the fits, Jasper started using medical cannabis oil and his seizures now only occur every few days rather than multiple times throughout the day.
Alice noted: “It’s just jaw-dropping. For this medication to do this is incredible.”
The 13-year-old has not been granted medical cannabis on the NHS; therefore, his parents have to pay £1,600 for a six-week supply, which is likely to increase when Jasper gets older.
His parents are having to use their savings to pay for the medication and Alice has had to stop paying into her private pension.
She said: “We’re not choosing between this and another medication or a form of treatment, we’re choosing between this and watching my son slowly slip into mental disability and then probably paralysis and death.”
Carly Ashton is unable to afford the private costs of medical cannabis to treat her two-year-old daughter Esme, who has an extremely rare form of epilepsy that impacts less than 700 children around the world.
After being treated with 15 different drugs and none of them working, Esme now spends most of her life sedated.
Healthcare professionals have told Carly that her daughter could die suddenly from a seizure if her epilepsy is not brought under control.
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Carly said: “Ultimately they could become more violent, they could cause broken bones, multiple hospital admissions, it could cause her to die in her sleep.”
With other children with the same condition benefitting from taking a form of medical whole cannabis, Carly is devastated and frustrated that Esme is unable to have the same treatment.
She said: “They are almost seizure-free or [entirely] seizure-free. It’s given their life back. Esme’s being denied that opportunity.”
Hannah said: “I am heartbroken that legislation I fought for has not led to the hoped-for change. I find it shocking that the Government has literally just washed their hands of this problem.”
The Department of Health and Social Care (DHSC) said in a statement: “Licensed cannabis-based medicines can be funded by the NHS where there is clear evidence of their quality, safety and effectiveness.
“It is important to carefully review evidence on 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.”
A spokesperson for the NHS said: “While there is limited evidence on the safety of these unlicensed products, we continue to encourage manufacturers of these products to engage with the UK medicines regulator, which would provide doctors with the confidence to use the products in the same way they use other licensed medicines.”
NHS Wales said: “Where an NHS healthcare professional wishes to prescribe these products arrangements are in place for the NHS to consider, and where appropriate, meet their cost.”
