Medical cannabis: why have there only been three prescriptions in three years?
In 2018, Hannah Deacon helped to make history by fighting to legalise medical cannabis for her son, Alfie Dingley. Alfie suffered from a rare form of epilepsy which meant that – prior to treatment with Bedrolite CBD oil – he was having around 500 seizures a month and visiting the hospital every week.
After working with the campaign group ‘End our Pain’, appearing on national TV and even meeting with the former prime minister Theresa May, Deacon joined forces with Professor Mike Barnes – a cannabis expert and campaigner – who applied for a license to prescribe the drug on Alfie’s behalf.
Eventually, the law was changed in November 2018, and Alfie became the first patient in the UK to receive a permanent cannabis licence. Since then, he has been seizure-free. Yet three years on from the legislation of cannabis-based products (CBPMs), the NHS has only issued three prescriptions of medical cannabis oil.
Why are doctors still not prescribing medical cannabis?
The “landmark victory” of reclassifying CBPMs from Schedule 1 – a drug with no perceived therapeutic value – to Schedule 2, was less of a triumph and more of a damp squib. “I thought the 1st of November 2018 would be a good day,” Prof Barnes tells me, “but the reality is not a lot has changed. Only three prescriptions in the whole of the NHS for medical cannabis oil and around 6,000 people in the UK are prescribing medical cannabis privately.” Which begs the question: why aren’t more people like Alfie benefitting from legalisation?
“It’s a combination of institutional ignorance and a negativity about prescribing it,” he says. The problem lies with the restrictive guidelines issued by medical bodies, from the Royal College of Physicians, the British Paediatric Neurological Association (BPNA) and NICE, according to Prof Barnes. “These bodies have tried to force it down a pharmaceutical route rather than see it as a botanical product.”
The vast majority of cannabis-based products are unlicensed medicines that can’t be prescribed by a GP, only by a specialist doctor. Although not mandatory, most doctors follow these rigid prescribing guidelines set by the BPNA and NICE and are reluctant to write prescriptions as a result. Furthermore, doctors are not insured to prescribe CBMPs (except Sativex, which is fully licensed), which means they’re reluctant to prescribe in case a patient suffers an adverse reaction and they are held responsible.
Another problem, according to Prof Barnes, is that the medical establishment remains conservative: “There’s a bit of a generational issue that those in charge have been brought up to think of cannabis as an anti-social drug of abuse.” Steve Rolles, a senior policy analyst at Transform Drug Policy Foundation, also believes the fallout from the war on drugs has meant the stigma remains deeply ingrained; “The legacy of the war on drugs – and its historic chilling effect on the research and development of CBMPs is a factor.”
He adds: “I always think if an intrepid explorer had discovered this magical plant that helped with anxiety, epilepsy and pain we would think it truly wonderful and be all over it. Yet cannabis still holds a stigma, and senior medical bodies continue to treat it like a pharmaceutical.”
Growing frustration for UK cannabis patients
Since seeing the benefit medical cannabis has had on her son, Hannah Deacon has campaigned for medical bodies, from NICE to the BPNA, to review regulation. When the law was changed, it gave her “great hope” that children and adults suffering from chronic conditions would have access to medical cannabis on the NHS. But, she adds, “it became clear, very quickly, that NICE was not going to approve these medicines without randomised controlled trials. This is the normal standard of trial for a single compound pharmaceutical. But cannabis is a plant and it does lend itself to trials of this nature due to the many hundreds of medicinal compounds found in it.”
This lack of accessibility means that the only option remaining is to go private, where prescriptions can cost up to £2,000 a month. Take the case of Indie-Rose, for example. Her mother, Tannie Montgomery, told the BBC that she spent £34,000 to keep her daughter alive. Without medical cannabis oil she was having up to 50 seizures a month.
While some people try to raise funds for private treatment, others have turned to the black market. It has been estimated that nearly a quarter of a million people with arthritis, 100,000 cancer patients, and 50,000 multiple sclerosis sufferers are among the 1.4 million Britons who are being forced to buy cannabis illegally to treat their symptoms, risking a criminal sentence.
“Patients are being ignored and pushed towards either fundraising thousands of pounds every month or going to the black market where products can be dangerous,” Deacon says. “This is not a way to reduce harm but to encourage it. I am shocked at the hard stance that medical bodies such as the BPNA have taken to advise their members against prescribing for children when they are doing so much to cause harm to their patients and their families.”
The future of medicinal cannabis
Big players in the medicinal cannabis industry have called for reform in their paper, UK medicinal cannabis & CBD Market – Ten Recommendations for Government. Cannabidiol (CBD) is a non-psychoactive substance found in oils, vape juices and foodstuffs. CBD products are widely available and are commonly used to treat anxiety and insomnia. Still, despite high demand, regulation is hindering the domestic growth of this market.
The report’s key recommendations include reforming the high THC cultivation and controlled license system, getting GPs to prescribe treatment, increasing the THC limit from 0.2 per cent to 1 per cent to align with international benchmarks, and allowing the cultivation of the hemp flower to extract CBD under an Industrial hemp license.
Professor David Nutt, the founder of Drug Science, set up Project Twenty21 to create a body of evidence for the NHS to show how the benefits of treatment with medical cannabis outweigh the potential risks.
The organisation has undertaken the UK’s largest ever medical cannabis patient study, the results of which were released last week.
The data shows a 50 per cent improvement in quality of life ratings among Twenty21 patients living with conditions such as MS, Tourette’s Syndrome and PTSD, and a significant improvement in patients’ ability to manage debilitating secondary conditions like anxiety, insomnia and depression. Researchers at Project Twenty21 hope that the emerging pattern of evidence – taken from real-world data – is eventually taken into account when regulating the prescription of CBMPs.
Mags Houston, head of communications at Project Twenty21 reaffirms the recommendations by industry players: “We need more evidence and research to prove the efficacy of medical cannabis for treating specific conditions and symptoms, to then influence change in the NICE guidelines for medical professionals to feel more confident to prescribe.”
She added: “We also need more education for doctors around CBMPs and how to prescribe for students, long-standing special consultants and GPs. Finally, we need to combat the stigma that still exists after decades of bad press stemming from the so-called ‘war on drugs’ of the 1970s.”
For children like Alfie Dingley, medical cannabis has served as a treatment that has dramatically improved his quality of life. For hundreds of thousands of others in the UK suffering from conditions like epilepsy, anxiety or chronic pain, it could have the life-changing potential to do the same. Reform of outdated regulation and recognition of real-world evidence would not only transform access and livelihoods for those in need but also stimulate the UK economy post-pandemic.
“We need research, education, and policy change,” says Houston. “Medical cannabis needs to be accepted by the public and medical profession alike in order to see real growth in this sector – it’s steady progress, but we’re getting there.”