In the midst of a healthcare crisis, the health secretary, Steve Barclay, has declared that “innovation is crucial to solving the challenges facing the NHS”. Yet the UK remains late to the party with regard to one of the most popular innovations in medical treatment over the past few decades – the use of medicinal cannabis.
First legalised in California in 1996, the medical use of cannabis is now part of the mainstream everywhere from Australia and Argentina to Peru and Poland as a treatment for conditions including epilepsy, Parkinson’s disease, endometriosis and, most commonly, chronic pain. In November 2018, it seemed as though the UK had finally caught up when Theresa May’s government changed the law to allow the NHS and private providers to prescribe cannabis-based medical products. The change followed lengthy public campaigns by Hannah Deacon, whose son Alfie suffers from complex epilepsy that can be eased with cannabis, and Charlotte Caldwell, who flew to Canada to to get a new supply of cannabis oil to help with her son Billy’s epilepsy, which was then seized at customs on her return.
Yet, over four years since the law was changed, the vast majority of prescriptions for medicinal cannabis are being issued through the hugely expensive private healthcare system. According to data released in January, a total of 89,239 prescriptions for unlicensed cannabis medicines were issued between November 2018 and July 2022 in England, but fewer than five of these were issued by the NHS.
While the NHS might point to the number of licensed cannabis products it has made available over the same period – roughly 11,000 – the deluge of private prescriptions for unlicensed alternatives suggests that there are still huge numbers of patients struggling to get access to the products that can actually help their conditions.
Here’s the problem: most cannabis-based medicinal products, while no longer being legally prohibited, have still not been granted a licence for use in the UK, meaning that doctors need to apply for specialist funding any time they want to prescribe them, or request their NHS trust to fund them directly. Furthermore, they can only do that after all existing licensed medications have been tried and shown to fail. Because these products are unlicensed, doctors could be open to legal challenges from patients in the case of negative side-effects.
Part of the reason why medicinal cannabis has been essentially ignored by the medical profession is that the government essentially washed its hands of the issue after changing the law, doing little to improve the understanding of the medication among doctors or put in place the structures that would actually facilitate regular access to patients.
One of the victims of this inaccessibility is 19-year-old art student Louis Petit. When he was just 12 years old, Louis suddenly began suffering from seizures, sometimes multiple times a day. He was placed on a cocktail of anti-epileptic drugs that worsened his seizures and stopped him from processing new memories. Louis’ mum, Emma Matthews, began to do her own research and came across Deacon’s campaign, as well as cases in North America of children with complex epilepsy being treated with cannabis.
Eventually, Louis and Emma moved to Rotterdam where they were able to access the cannabis he needed. After a few months in the Netherlands on his new medication, they say, Louis had gone from having multiple seizures a day to one seizure every six weeks. “Everyone who saw him couldn’t believe how much better he was,” says Emma.
Rotterdam became home for the next four years, during which time Louis became seizure-free thanks to a combination of cannabis and comprehensive clinical support. After he won a place at a prestigious art school in London, they returned to the UK in 2021. Emma had been hopeful that the recent legalisation of medicinal cannabis in Britain, plus evidence from their time in the Netherlands that the drug works for Louis’ condition, would be enough to continue him on his cannabis medication on his return.
But Louis and Emma have found it impossible to get an NHS prescription. Their neurologist in London originally agreed it would be unethical to withdraw Louis’ Bedrolite (the cannabis-based medicine he needs, which is unlicensed despite it being the very product that Alfie, whose campaign helped to change the law in 2018, receives). But after a fruitless back-and-forth between King’s College hospital NHS foundation trust and NHS England, the family were left with no option but to go private. The cost is £17,500 a year; Emma and Louis have taken to Crowdfunder to try to raise the money.
A King’s College hospital spokesperson said: “We are unable to comment on individual cases for patient confidentiality reasons. However, clinicians at King’s use Nice guidance and the latest evidence to guide their decisions about the best and safest treatment options for patients.”
But this is ultimately about much more than individual cases. Britain could be doing so much more on this front and may even be wasting resources in the process. Initial research from Europe and North America tentatively suggests that medicinal cannabis-based products may be “cost-effective treatment options for MS spasticity, Dravet syndrome and neuropathic pain”. Further research from North America also points to a decrease in the use of opioids, which carry a much larger risk of addiction, among patients using medicinal cannabis.
While parts of the British medical establishment seem reluctant to act on evidence from overseas regarding this issue, the fact that cannabis has been of benefit to patients in Canada, the Netherlands, the Czech Republic and New Zealand, to name just a few countries, suggests that it is at least worth trialling properly in the NHS.
What is to be done? Changes could include some of the proposals that were included in the defeated medical cannabis (access) bill, which was blocked in parliament in 2022. The bill suggested allowing GPs to prescribe cannabis themselves, as well as establishing a commission on cannabis-based medicines, which could give them greater legitimacy in the eyes of the medical profession. Also, it is important that more cannabis products are licensed by the Medicines and Healthcare products Regulatory Agency if access to these drugs is going to improve.
With his medication provided free of charge, Louis would be able to complete his art course and Emma could return to work herself, no longer having to be a full-time carer for her chronically ill son. There are thousands of similar stories across the country. A new YouGov poll even suggests there are 1.8m people in the UK using cannabis illegally to treat symptoms. At a time when the government is desperately looking for efficiency savings in hospitals and across wider society, it is overlooking an easy win.
• This article was amended on 24 March 2023 to include Charlotte Caldwell’s campaign, along with Hannah Deacon’s, when referencing the 2018 change to the law that allowed NHS and private providers to prescribe cannabis-based medical products.
Dr Kojo Koram teaches at the School of Law at Birkbeck, University of London
