The UK is the largest exporter of medicinal cannabis in the world, and yet under current legislation, it is illegal in Britain for cannabis to be supplied to ease the symptoms of chronic illnesses – such as cancer, diabetes, HIV and Crohn’s disease – or for it to be prescribed by a doctor.

The recent plight of Billy Caldwell, a 12-year-old boy with severe epilepsy, whose seizures appeared to be lessened by the use of cannabis oil, has shone new light on this disparity. After a high profile media campaign, the Home Office intervened to offer Caldwell a 20-day license to use the oil. It also announced a review into the law regarding the prescription of medicinal cannabis.

This has led many to question why the drug is still illegal in the first place. Theories range from Home Office resistance to issue official licensing to all but one company, GW Pharmaceuticals, for the development of new products to the stigma and dangers attached to recreational use.

It is estimated that over a million people in the UK rely on the use of medical marijuana for an abundance of reasons, be it for pain relief as part of palliative care or to reduce involuntary shaking for those who suffer from Parkinson’s disease. In reality, that figure is probably a lot higher. Measuring anything is difficult when use is entirely unregulated.

Often with no option other than to use debilitating opiates like diamorphine (otherwise known as heroin, which is legal to prescribe) and a cocktail of pharmaceutical medication with unpleasant side-effects, those in desperate need are being forced to turn to the black market to buy products of dubious origins on the internet or deal with criminal operations on the streets to get what they need.

Those who are able could also risk potential jail time by growing their own, or turn to clandestine operations to shoulder any illegal activities for them.

Gareth*, a professional in his 40s, has been growing medicinal cannabis for more than 20 years to deal with the effects of his own chronic illness. At the moment, he’s using large, black control tents set up in an old bedroom, still full of family memorabilia and flanked by a disused double bed, to cultivate his plants. By doing so, he’s risking a potential jail term of up to 14 years.

“I was fed up of having to deal with drug dealers and criminals to get cannabis from, and having no assertion of quality, where it comes from or how it would affect me,” he says on why he started his operation.

“In the past, I’ve found cannabis that was laced with heroin and speed by dealers to make it more addictive to people and increase the demand.

“Growing it myself gives me the ability to control to some degree the levels of CBD and THC in my plants. I grow a variety of different strains for different effects they can give people. Sativas have an uplifting effect while Indicas have more of a ‘body stoned’ effect.”

CBD and THC are two of the best-known cannabinoid compounds contained within cannabis plants. They operate together like yin and yang: the former uplifts and provides anti-psychotic qualities, while the latter can induce relaxation and make you feel stoned. Many of the plants that appear to be beneficial to Gareth and those he supplies – at least on anecdotal evidence – contain a balance of both.

It was a particular strain of Sativa plant, which contained the higher levels of CBD, that Gareth found effective in treating nausea and pain in those dying of cancer.

Credit: Jennifer Selby

“A friend of mine’s mother found out that she had spinal cancer and it spread to her lungs.

“They caught it very late and she was given three months to live. She went through chemotherapy and it made her very sick. It was hard for her to enjoy her last few months. She really wanted to avoid using opiates like morphine and diamorphine, which is heroin. She had three children and she wanted to be as conscious as possible and give them her last moments.

“Cannabis gave her the ability to eat, took away some of the sickness and meant she didn’t have to be high all of the time.”

Gareth believes denying cancer patients the choice of medicinal cannabis over stronger opiates is a direct breach of human rights.

“It is limiting options for people and putting them onto the worst case scenario – heroin – straight away. It takes away your personality and who you are.

“I think it is a massive human rights violation to give people the choice of only an opiate or a pharmaceutical rather than a potential natural product that may be incredibly useful to them. People shouldn’t be told how to live in that way.”

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Alex Fraser is a leading figure in the United Patient’s Alliance, an organisation that represents the interests of medicinal cannabis patients in the UK. He uses cannabis every day to help him deal with Crohn’s disease, a type of inflammatory bowel condition.

“I live in Brighton, so finding cannabis for me isn’t difficult,” he says. “Finding cannabis that works with my condition is another story. If I buy it on the street, there is no way of me knowing if it is unadulterated. It’s unregulated and made in someone’s back room.

“I need a cannabis that is very balanced in CBD and THC. Most of it on the street is very high in THC. Through the Patient’s Alliance I know people that grow their own cannabis so I go and speak to them about it, and often [getting cannabis from them] is much better.”

Greg de Hoedt, a fellow Crohn’s disease sufferer who relies on cannabis to survive, set up the UK Cannabis Social Clubs after being inspired by similar collectives in the US.

The organisation now has 160 clubs around the UK, growing a regulated number of plants for medicinal and personal use. Under the scheme, they collect data and swap information on the strains that work for different people with different conditions.

Uniquely, they also offer members the opportunity to have their cannabis tested by sending samples to a laboratory in an unspecified location so they can find out exactly what is in it, and the levels of cannabinoids it contains.

Local clubs supply cannabis to those in desperate need all over the UK. At the time of speaking, Greg had embarked on a three-hour drive to deliver oil to a cancer patient who had exhausted all other options.

“A lot of people grow cannabis for people who are unable to do it for themselves, either through fear of breaking the law, or lack of capabilities, for example, if they are physically disabled. We have a tag plant model. Nine plants or under and the police don’t generally consider you a commercial outfit.

“However some police forces were handing out cautions and confiscating plants. I had someone on the phone telling me their home was being raided by police at that moment. He had four plants he had been growing for his mother who is sick with cancer. The police ended up taking the plants but leaving the cannabis for his mum. Even [the police] know how vital this is.”

Not all, however, are lucky enough to have the right supply or combination of cannabinoids made available to them in time.

“I’ve known some of these mothers who have lost children to epilepsy who wanted access to cannabis oil but couldn’t get it because their supply had dried up or their dealer got arrested.”

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One such mother on the brink of a similar tragedy, Charlotte Caldwell, whose son, Billy, together with the case of six-year-old epilepsy sufferer Alfie Dingley, forced the Home Office review into relaxing the law regarding the prescription of medical cannabis to patients in need.

So far, it is not clear exactly what the review will achieve. There are talks of an expert medical panel being set up to judge individual cases, like Billy and Alfie’s, as they come up. However the sheer volume of people in need – and the lack of knowledge among clinicians about the practicalities of cannabis use, not to mention clinical research stymied by licensing issues and costs – could make this an impractical solution that leaves desperate people continuing to rely on grows from clandestine operations.

Sources have suggested the Home Office could move the 2001 Regulations scheduling of cannabis, which determine in what circumstances it is lawful to possess, supply, produce, export and import controlled drugs, from a Schedule 1 drug to a Schedule 2 drug. This means it will be re-categorised from being a drug considered to have “no therapeutic value” to one that can be prescribed, and therefore legally possessed, if supplied by pharmacists and doctors.

The fact cannabis isn’t already considered a Schedule 2 drug is a point much discussed by the growers. This is largely due to the then home secretary Theresa May granting a license for a drug called Sativex, made by GW Pharmaceuticals after years of research in Britain in 2010.

Containing CBD and THC cannabinoids, and grown from the seeds of Skunk 1, a high-strength THC marijuana not dissimilar to the sort smoked recreationally on the streets, the oral spray used to treat spasticity in patients with MS has been tightly described and marketed to avoid being labelled as cannabis – despite clearly being a form of cannabis described as illegal under the 1971 Misuse of Drugs Act (pure CBD is currently legal).

If cannabis is officially deemed to have “no therapeutic value” and “not enough research conducted” on its benefits, why is the government knowingly licensing Sativex as a medicine?

Moreover, why are we exporting and growing quite so much of it?

According to a recent UN report, 95 tonnes of marijuana was produced in the UK in 2016 for medicinal and scientific use, making up 44.9 per cent of the world total. Britain is also the largest illegal exporter of the drug, sending out 70 per cent of the world’s total for consumption abroad.

Ideas as to why this seeming hypocrisy exists range from the government's potential vested interest in GW Pharmaceuticals to keep a monopoly on the production of medicinal cannabis (a large investor is Theresa May’s husband Philip May’s Capital Group. GWP chair Geoffrey Guy is also a Tory donor), to accusations of a civil servant prejudice against cannabis because of the stigma attached to recreational use.

Peter Reynolds, the president of Clear, a UK lobby group which campaigns to end the prohibition of cannabis, says licensing for other companies to produce and research cannabis-based medicines has been all but impossible.

“The biggest scandal of all is that the government takes the position that there is an established licensing regime for companies and patients and that anyone and any company can apply for one.

“That is a lie. We’ve applied for licenses for very sick people in the past and they have all been rejected without review.

“I was asked to apply for a license of a large and very reputable Canadian company who wanted to research cannabis for potential use in its product – there was no way to get a license. The Home Office rejected it out of hand. They wanted to build 100,000 sq ft custom build facility, employ hundreds of people, invest millions in the UK, and the Home Office was just not interested.

“The reason for it, to borrow that phrase from the Windrush scandal, is to create a hostile environment to people, to individual people who use cannabis as medicine. I think it is deep-seated prejudice, embedded in senior civil servants. I think its because they don’t understand cannabis. They are prejudiced against cannabis use because of counter-culture.”

A leaflet published by Clear.

The Home Office declined to comment – or to shed any further light – on Reynold’s claims.

Instead, they told the New Statesman: “We recognise that people with chronic pain and debilitating illnesses are looking to alleviate their symptoms. However, it is important that medicines are thoroughly tested to ensure they meet rigorous standards before being placed on the market, so that doctors and patients are assured of their efficacy, quality and safety.”

The chicken and egg and scenario continues.

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Even if the government do decide to reschedule medicinal cannabis, cost will likely continue to be a factor for those seeking the drug, particularly if the products are forced to go through the same rigorous licensing and marketing procedures as Sativex was.

Sativex is not licensed for prescription on the NHS in England, Scotland and Northern Ireland because is too expensive, setting back the average patient around £400 a month. Almost identical medicinal cannabis can be obtained on the street, or grown, for a tenth of the price. NICE (the National Institute of Care and Health Excellence) advises against Sativex for the same reason, deeming the effectiveness of the product not equal to its monetary value.

A drug for specific forms of childhood epilepsy, Epidiolex, also made by GW Pharmaceuticals thanks to a commercial grow owned and managed by British Sugars, could be available in the first quarter of 2019. Again, the cost of that is a moot point, with some analysts predicting prices per month could creep into the thousands.

“At the moment, even the one cannabis drug that is out there, people can’t afford it,” Greg continues. “People are forced to break the law to seek it. If they release a medical cannabis that is too expensive or isn’t the right strain for their condition, they will just carry on doing what they are doing now and growing it themselves.”

“Even if they did relax the laws on licensing cannabis on prescription I would still continue to grow,” Gareth agrees. “Even with imports the problem will be the price. People need instant care and they should have access to it regardless of what they can afford.”

Perhaps a better thing for the Home Office to consider, Greg suggests, is that licensing pharmaceutical products based on cannabis will not stop people from growing their own. Instead, there are opportunities for them to be resourceful.

“We need to have a testing facility where patients can send their strains in, test them, and record the information and the effect of different strains with different combinations of CBD and THC on patients,” he says.

There is another fix that could radically change things for sufferers more quickly. Peter believes upping cannabis to a Schedule 4 drug would allow individuals and clinicians to import licensed and tested medicinal cannabis, like Bedrocan, from the Netherlands.

“If the government change the drug to Schedule 4 today, then they can prescribe a drug already regulated by an EU government, already fully researched. There is no excuse at all for it.”

Even if the review, expected to be rushed through by Home Secretary Sajid Javid in a matter of weeks, manages to incorporate all of the above, there’s another reason many patients will continue to grow their own that is hard to put a value on: the control it gives them over their own health in an otherwise out-of-control situation.

“If you have a chronic illness, you are given a bag of pills by a doctor and told to get on with it,” Greg concludes. “Your social life is dead. People do not want to come and hang out at your home when you are sick.

“When I was in America, patient life was very different. They had collectives, they grow between them and they share their meds between them I felt so much better. Yes, I’m getting cannabis, but the social interactions I’m getting are making me feel human again.

“People taking health into their own hands in this way? That’s empowerment right there. It’s my medicine, my choice.”

*Name has been changed for legal reasons.