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After a hard-fought victory to legalise medical cannabis in the UK, why is it still so hard to access?
00:29:46
Two mothers fought British bureaucracy to obtain lifesaving cannabis medicines for their children. But most patients are having to go private – at huge cost Written and read by Kojo Koram
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Kojo Karam
This is the Guardian.
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Kojo Karam
This article contains some swearing welcome to the Guardian
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Long Read Showcasing the best long form journalism covering culture, politics and new thinking. For the text version of this and all our long reads, go to theguardian.com longread.
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Kojo Karam
After a hard fought victory to legalise medical cannabis in the uk, why is it still so hard to access? Written and read by Kojo Karam. In the summer of 2012, Britain was in a festive mood. It was the year of the Queen's Diamond Jubilee and the London Olympics and the country was celebrating. But for former hairdresser Hannah Deakin and her young family in Warwickshire, it was a summer of ambulances, hospital wards and doctors rushing in and out of emergency rooms. Eight months earlier, Deacon had given birth to a healthy baby boy named Alfie. The early months of his life had been challenging for her and her partner Drew, as they are for any first time parents. But by the summer, Alfie was sleeping and feeding well and it felt like the family was settling into a new rhythm. However, one night the couple woke up to find their baby's little body gripped by a paralyzing seizure. The family lived in the market town of Kenilworth. They immediately rushed Alfie to their local hospital in Warwick, but it lacked an intensive care unit and the staff had no experience of these types of seizures. Alfie's health worsened by the hour. At first, the doctors followed the protocols for an infant heart attack. When this failed, they switched to the treatment for someone suffering a febrile seizure. The convulsions a child can suffer when they have a particularly high Temperature. Alfie seizures were whole body. Each time they struck him, his tiny frame would strain and convulse and he would stop breathing. Deakin watched in horror each time her baby boy began to turn blue. The doctors called a number of pediatric specialists but couldn't get Alfie into Birmingham Children's Hospital, the nearest big specialist unit, as it was already overcrowded. He was finally given a bed at Stoke Hospital, which had an intensive care unit for children in Stoke. Alfie was put on life support. The doctor said they had to do this just to give his brain a chance to calm down. Deacon said they would periodically take him off life support to see if he would stop seizing, but he wouldn't, so they would put him back on. This continued for two weeks. Doctors told the family he had a virus, but they couldn't explain what the virus was. Eventually, Deacon snapped. I just thought, sod this, he's going to die if I don't do something. So I found my voice. Perhaps for the first time in my life, I stood up for myself and my family. She demanded that Alfie be moved to the best children's hospital in the country, Great Ormond street in London. The doctors there gave him steroids and after three and a half weeks of seizures, Alfie's body finally stilled. But this month long ordeal was just the beginning. Alfie continued to suffer seizures every few months until age 5. He was diagnosed with a condition called PCDH 19, a very rare form of epilepsy. Deacon could no longer carry Alfie as he was large for his age and his seizures were no longer knocking him out, meaning she and the doctors would have to wrestle him down to give him steroid injections. I remember one particular night when we were holding him down, she recalled. I think the doctor tried 10 times to get a needle into his hand and he was screaming and screaming and crying, mommy. It was really traumatic. All the options offered to the family looked bleak. Alfie's physical and mental development had been seriously impaired by his condition. The medication he was on was destroying his quality of life while also failing to stop his seizures. Deakin decided once again to take matters into her own hands. One night, she opened her laptop and typed natural remedies for epilepsy into a search engine. To her surprise, the page was filled with links to articles proclaiming the medicinal powers of cannabis. When Deakin began her research in 2017, the UK was one of the few jurisdictions in the west to classify medicinal cannabis as illegal. Cannabis had become legal for medical use in California in 1996. Since then, patients suffering from a range of ailments, including multiple sclerosis, chronic pain, glaucoma and forms of complex epilepsy, have been able to access medicinal cannabis legally on prescription in more and more US states and other countries every year. But in Britain, it remained classed as a Schedule 1 substance, the strictest level of control for drugs that were seen to have no accepted medical value. There were greater controls around medicinal research and use of cannabis than there were for even heroin and cocaine. Today, things are different. There are more than 30 private clinics currently prescribing medical cannabis in the UK. You can find them in Sunderland, Leicester and London. Adverts on the London Underground or plastered on billboards recommend that you contact clinics to discover how you might treat your chronic pain, your sleep deprivation or your anxiety with vague sounding, exciting new herbal treatments. Claudia Winkelmann and world champion boxer Anthony Joshua have partnered with cannabidiol companies to promote products that offer the health benefits of cannabis free from tetrahydrocannabinol thc, the part of the cannabis plant that causes a high. That shift is partly thanks to campaigners like Deakin. But the reality on the ground is that, at least when it comes to accessing treatment via the nhs, far less has changed than it might seem. William o' Shaughnessy is remembered as one of the great medical innovators of the Victorian age. Celebrated for his contributions to the treatment of cholera by developing an early form of intravenous rehydration. He also conducted trials to show that cannabis could treat a range of human diseases. O' Shaughnessy graduated from the University of Edinburgh in 1829, just before a devastating cholera outbreak hit British shores in 1831. And his new IV treatment saved countless lives. But his maverick experimental approach made o' Shaughnessy a controversial figure among his peers, and he was passed over for the position of professor of Medical Jurisprudence at the University of London. With opportunities in London curtailed, o' Shaughnessy joined the East India Company as a surgeon in the Bengal service in 1833. At the time, and for more than a century afterwards, the vast territories of the Indian subcontinent were the chief source of revenue for the British Empire. With the territory came control over the world's largest supply of of the cannabis sativa plant, otherwise known as Indian hemp. At first, to the British, the plant's value lay in the strength of its fibres. Hemp was used to make the navy's ropes and rigging, among other commodities. The British also took an interest in the way the people in India used the plant for medicinal treatments and the pleasure of intoxication. The East India Company shareholders began to see an exciting new income stream. They developed a monopoly system whereby cultivators could only sell to licensed suppliers. Meanwhile, the East India Company controlled the trade, collecting taxes of multiple points in the supply chain. And when Britain transported indentured labourers en masse from India to the Caribbean, they brought cannabis with them to ensure that during the long days on tropical plantations, the workers could at least comfort themselves with a traditional smoke. The transfer of populations between the west and East Indies led to a cross cultural pollination that is embodied in the shared language, iconography and philosophy that surrounds the use of ganja in places as distant as Jamaica and India. Upon his arrival in India at just 24 years old, O' Shaughnessy developed a fascination with the local medicinal uses for cannabis. In 1839, he wrote a monograph on Indian hemp that remains one of the most extensive scientific studies into the properties of the cannabis plant ever written. By conducting trials on fish, birds and eventually controversially, children, o' Shaughnessy revealed the potential of cannabis in pain management. His investigations also found that cannabis was particularly useful in treating convulsion disorders, or what we now call epilepsy. O' Shaughnessy began sending botanical specimens to contacts at the Royal Botanic Garden in Edinburgh, spreading curiosity about the drug to the medical establishment in Britain. Cannabis was never wholly free from controversy in Victorian Britain, but once its medical properties were known and with both the East India Company and the British colonial authorities profiting greatly from the world's largest cannabis producing regions, it didn't have the stigma and fear that would be attached to it. During the 20th century, in the face of a growing temperance movement, British politicians undertook a review of the supposed dangers of the plant as part of the Indian Hemp Drugs Commission of 1893, but declared cannabis a relatively mild intoxicant. However, as the US began to push for drug control legislation at a global level, things started to change. A moral crusade against drugs became one of the first foreign policy interventions of the United States at the start of the 20th century. A crusade that was carried forward by the League of nations, which in 1925 at the Second Opium Convention expanded its list of prohibited drugs to include cannabis. The new international drug laws led to domestic legislation which reinforcing the bans on the non medical use of certain drugs. The 1928 Dangerous Drugs act prohibited cannabis in the UK for the first time. The first Dangerous Drugs act of 1920 had criminalised opium and cocaine. Cannabis products began to slowly disappear from the shelves of apothecaries. However, it wasn't until after the Second World War that cannabis was strictly policed in the uk, where cannabis smoking was associated with degenerate alternative lifestyles and a black immigrant population, many were suspicious of the creation of the national health service in 1948 gave people free access to highly skilled medical practitioners for the first time. But the NHS also centralised and standardised medical knowledge, pushing alternative healthcare approaches to the margins. Respectable British society was gripped by a moral panic about drug taking subcultures and any potential medical benefits of cannabis disappeared under an avalanche of scare stories. Thanks for listening to the Guardian Long read. The story continues right after this
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Kojo Karam
Welcome back to the Guardian Long read. The NHS was approaching its 70th anniversary when Hannah Deakin began researching medical cannabis for her son. The NHS is the closest thing to a unifying national symbol Britain has. Nearly 90% of British people support the idea of a free at the point of use health service. But decades of underfunding by successive governments has weakened the NHS's ability to keep up with new understandings of healthcare and some argue this has produced a culture that is suspicious of innovation. Deakin's experience of the NHS following Alfie's diagnosis was a daily round of frustrating conversations with doctors dismissive of any suggestion that cannabis might help her son's epilepsy. She began to connect with families in other countries who had used cannabis effectively alongside antiepileptics for children, and joined Facebook groups where parents shared advice about different plant strains and THC CBD balances. Eventually, she plucked up the courage to approach Alfie's doctors about the possibility of trying Alfie on cannabis. Medical cannabis was illegal in the UK at the time and Alfie's doctors stuck to traditional anti epileptic treatment drugs, a ketogenic diet, even surgery. Every time Deakin responded with an inquiry about cannabis, she would be shut down. One day after Deakin asked one particular doctor again about cannabis as an alternative Treatment. He put down his pen, peered over at her and muttered, if you speak to me again about cannabis, I'm going to report you to social services. Faced with the impossibility of getting Alfie access to cannabis treatment in the uk, Deakin began to look abroad. Most of the families she had engaged with online were in North America, but she couldn't afford to take Alfie to the US or Canada. In the Netherlands, medical cannabis was a mainstream treatment for issues such as neurological disorders, chronic pain, musculoskeletal disorders and cancer. However, the family would have to move quickly. Brexit was looming and once that was finalised, they would lose their EU health insurance and another door would close. In September 2017, the family left the UK for the Netherlands. They packed their Renault Megan with toys, clothes and medication, shoved alongside their two children, Alfie, then six, and his three year old sister. Then they drove onto a ferry. It was fucking terrifying, the most terrifying thing I've ever done, Deacon recalled. When we met for breakfast in London years later, we would have no support, no social worker. We were leaving our families behind. But it was either that or face Alfie's death. In Rotterdam, Alfie began a new treatment program with medical cannabis at the heart of it. At first it seemed that all their efforts had been futile, as the treatment seemed to have no effect on Alfie's condition. But the doctors kept slowly increasing the percentage of cbd, a non psychoactive but potentially therapeutic compound found in cannabis. And when they had reached 150ml of CBD, he went 17 days without having a single seizure. It felt like he just opened his eyes to the world, Deacon said. For the first time, her six year old son suddenly began to show an interest in playing with his little sister. By the time the family returned to the UK less than a year later, Alfie had gone 40 days without a seizure. Medical cannabis had proved to be essential in stabilising Alfie's condition. Now Deakin would set about campaigning for a change in the law in the UK to allow him to access this treatment at home. Returning to Britain meant taking Alfie off his medication. The family knew that he would get ill again as a result. Supported by medical cannabis advocates, Deakin began a media tour making it clear that her family were in a race against time to change the law on medical cannabis. Before the seizures shortened her son's life, the family story captured the imagination of television producers and newspaper editors. Deakin appeared on morning breakfast shows and news panels to talk about the importance of changing the drug laws in March 2018, she received an invitation to meet the then Prime Minister, Theresa May, over to Downing Street. May promised that she would instruct the NHS to work with the Home Office to secure Alfie a license for the use of medical cannabis and then the government would look at the law on cannabis more broadly. However, shortly after this meeting, Alfie's application for cannabis was rejected again. Deakin redoubled her media appearances, saying she felt the Government had lied to her and was risking her son's life. In the same year, Charlotte Caswell, from Northern Ireland, mother to Billy, another young child suffering with epilepsy, was told her doctor could no longer prescribe the cannabis oil her son needed to control his seizures. Caswell decided to take action. She flew back from Canada with cannabis oil for his treatment. It was confiscated by UK customs officials. Billy had a seizure just hours afterwards. National media reported the story of how the Home Office was denying a sick child his life saving medication. The two stories created a groundswell of public sympathy. Here were two mums from different corners of the uk, each with a story about how the Government's aggressive drug laws made it impossible for them to care for their children. How many others might be out there eventually? On 19 June 2018, Deakin received a phone call from one of the government ministers, Nick Hurd. He told me, sorry it's taken so long, but today you and I have changed history. The law on medical cannabis across the entire United Kingdom of Great Britain and Northern Ireland would be updated. Heard told her. Deacon breathed a sigh of relief. Perhaps hundreds of thousands of people across the UK would now be able to use medical cannabis on the NHS to deal with a range of chronic issues. But then, Deakin said, it became clear the change in the law wasn't actually going to help people. When Alfie finally received his prescription for medical cannabis in 2018, in the form of a drug called Bedrolite, it was free on the nhs. However, since then, it has not been easy for other patients to access. For the past few decades, consultancy firms have been brought in to reshape the NHS in the image of the market, introducing cuts in the name of efficiency. As a result, Britain has seen a huge growth in private health care, with 32% of Britain surveyed in 2024 now stating that they have previously gone private for health treatment. The total value of the UK's private healthcare market rose to 12.4 billion pounds in 2024, indicating the UK's drift towards a two tier medical system. And few things illustrate this two tier system more clearly. Than the way medical cannabis has been rolled out since 2018. In the years since Deakin's efforts helped to pressure the government into legalising medical cannabis in the uk, only a handful of others have been able to enjoy the same access as Alfie. According to the NHS Business Service Authority, a total of 89,239 prescriptions for unlicensed cannabis medicines were issued between November 2018 and July 2022. But fewer than 5 of those prescriptions were issued by the NHS. The rest have had to go. In November 2018, the UK moved cannabis from Schedule 1 to Schedule 2, thereby allowing doctors to offer prescriptions to patients. However, resources were not invested into improving understanding of the medication among doctors or putting in place the structures that would provide regular access for patients. Making a medication legal isn't enough to get doctors to prescribe it to patients. It needs a license, which is usually obtained after verified clinical trials. Then, once it gets its license, NICE, the UK's National Institute for Health and Care Excellence, which provides guidance on medication and cost effectiveness, should include the medication as one of its recommended options from which NHS doctors can select. The government has kept tight controls on the research into cannabis based medicines, making it prohibitively expensive and a bureaucratic nightmare for scientists to build up the evidence base that would be needed for a wide rollout of the treatment on the nhs. Most cannabis based medicinal products, while no longer legally prohibited, are unlicensed. Doctors need to apply for specialist funding when they want to prescribe it for an individual patient or request for their trust to fund it directly. NHS doctors are wary of taking up the issue of medical cannabis and most just stay clear of it. In 2019, the NHS launched a review into the barriers patients faced to access cannabis and admitted that many clinicians do not have the specialist professional education to feel confident prescribing cannabis, even when it could be the appropriate medication. At the same time, the private medical cannabis industry in the UK has been quietly expanding. In August 2024, ITV News reported that the UK's medical cannabis marker was growing at a dramatic rate, about 10% a month, with companies launching aggressive digital advertising campaigns on Instagram and TikTok, pushing back against decades of stigma surrounding the drug. These marketing campaigns do an essential job in educating the public about the potential medical benefits of cannabis, but they also help promote the private clinics that are now competing to be the big winners in this area. When medical cannabis was legalised in the uk, it was introduced in haste under pressure because the government feared negative press about sick children being denied medicine. They had been able to access in neighbouring countries. Then the government washed its hands of the issue. Hannah Deakin was disappointed at the change in law, but meant so little change at clinical level. They changed the law to shut me up, she told me today. Medical cannabis in the UK is ultimately driven by profit. This means potential patients receive targeted ads on their smartphones. And NHS professionals don't always feel comfortable providing private cannabis clinics with the full medical information about the people who walk through their doors. The emergence of a booming private medical cannabis industry across Britain has sporadically been in the news recently. Medical cannabis returned to the national headlines after the death of Oliver Robinson, a 34 year old man with a history of depression and cannabis dependency who took his own life in November 2023 after being prescribed medical cannabis by a private clinic. The renewed panic about cannabis has focused on long held associations between the drug and mental health problems, including psychosis. But it is through better regulation of private providers that the risks of medical cannabis can be minimized, while the relief it provides to patients suffering from conditions such as Ms. And epilepsy can be made available to many at affordable rates. A year ago, in May 2025, Hannah Deakin passed away from cancer. She was survived by her partner Drew, and their children. I want Alfie to be safe and well when he's an adult and I'm not here, Deakin had said to me. I don't want him not to be able to access what helps him to be well. Deakin had always stressed throughout our conversations that it was important to her that the medicine would be available not only to her son, but to everybody who needed it. Her mother is carrying on her campaign. If Deakin was faced with Alfie's illness today, while she would have been legally entitled to access medical cannabis in the uk, she would probably be forced to pay through the nose, potentially as much as £1000amonth to get it through the private market. For our future well being as a society, we need to think seriously about how we design a post prohibition framework for regulating drugs. With a bit of work, ours could be a society that minimises the harms of drugs while also sharing their life changing potential benefits as widely as possible. Thanks again for listening to the Guardian. Long read that was after a hard fought victory to legalise medical cannabis in the uk. Why is it still so hard to access? Written and read by Kojo Karam and produced by Nicola Alexandru. The executive producer was was Ellie Burey. This is an edited extract from the next the winners and losers in the Future of Drugs, published by John Murray on 4 June. To support the Guardian, order your copy@guardianbookshop.com Delivery charges may apply.
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For more Guardian long reads in text and a selection in audio, go to theguardian.com longread read.
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Kojo Karam
This is the Guardian.