25 Nov Cannabis Aficionado : Carly
Carly Barton: Pushing Boundaries as the UK’s First Medical Cannabis Patient
Carly Barton was 23 years old when she suffered a stroke. Anatomically, a stroke is caused by a temporary loss of blood flow to the brain. A simple explanation for an event that can alter the course of thinking, sensation, and perception for the duration of a patient’s life. For some, the aftermath of a stroke can lead to visual hallucinations, the loss of speech, or paralysis. Barton’s stroke, however, left its mark in the form of near continuous pain.
Several years later, it was this pain that landed Barton in a peculiar predicament — what does it take to get the National Health Service (NHS) to cover medical cannabis? Medical cannabis was legalized in the United Kingdom in November of 2018. Although a bit behind the times by North American standards, Home Secretary Sajid Javid called for “swift action” after hearing testimonies from patients and caregivers of those with debilitating and life-threatening illnesses.
True to his word, senior doctor’s were able to write prescriptions for cannabis as of November 01, 2018. And yet, only a few dozen patients have received official prescriptions for the herb. One of these patients is Barton, who has been forking over nearly 400 quid ($527 USD) per month. While politicians were moved to action by stories of epileptic children, it was Barton who received the first medical cannabis prescription in the UK.
And getting one was no easy task.
Gone to the Weeds
Pain is not uncommon after a stroke. While the body itself may not have experienced substantial harm, the brain can continue to send pain messages over and over again, like a noxious memory of an assault that cannot be erased. In Barton’s case, nerve damage garnered her the diagnoses of fibromyalgia and post-stroke neuropathy, which are most commonly treated with opiate pain killers.
“I was prescribed opiates in increasing doses for many years,” Barton explains, “and that leads to quite high doses of fentanyl and morphine.” A doped-induced delirium that lasted for six long years — housebound, imprisoned by one loud and omnipresent sensation, pain.
“Despite the fact that I was on opiates I was still experiencing a huge amount of pain, to the point where I couldn’t breathe, I couldn’t eat, I couldn’t sleep,” says Barton. “I was in my twenties and I needed help to dress and to cut my dinner up and just do really basic life stuff, and that was pretty horrible.”
Before her stroke, Barton was happily entangled in the spring of her life. A twenty-something art lecturer, she spent most of her time buzzing from welding projects to social affairs, a regular “pocket rocket” by her own terms. Still, even given the longstanding stereotypes about artists and cannabis, Barton was far from a stoner-girl hoping that the plant would unlock some hidden creative talent. “I didn’t think it was really me,” she says.
After the stroke, however, life came to a stand-still. In the years after the incident, Barton found herself stuck in a loop. “I was willing to literally try anything to get out of the cycle of just drinking excessive amounts of oral morphine and being on fentanyl all the time,” she says. It was at this point that a friend suggested that Barton try cannabis, a little homegrown which is illegal to cultivate in the UK.
“I had a lot of ideas, those notions, those preconceived notions about cannabis,” Barton explains. For one, she was worried about how the plant might affect her mental health, given that the herb has a reputation for worsening psychiatric ailments like depression and psychosis. And yet, after trying cannabis, Barton found her world turned right-side round within the span of 10 minutes.
Barton took a few puffs. “I went upstairs and my partner said to me, ‘are you alright?’ and I was saying, ‘something’s missing, something’s odd, something’s off.’ I couldn’t put any words to it,” she says. “And then I realized that the feeling that I had was just no pain.”
“It was so alien to me, not being able to feel any pain in my body, that I was confused as to what was happening. As soon as I realized that I couldn’t feel any pain head-to-toe, that was just like the moment when everything changed.”
“I haven’t touched a drop of morphine since that day.”
Becoming the First Medical Cannabis Patient in the UK
For six years, Barton had been stuck in a haze. Unable to perform simple everyday tasks, she spent most of her time lying in bed or lounging about the house. Cannabis, however, gave Barton her life back. It was time to spread the word. Impassioned by the extent of her recovery, Barton teamed up with other patients involved with United Patient’s Alliance, an advocacy group that services around 50,000 patients that currently rely on the black market to supply their medicine.
Founded in 2014, United Patient’s Alliance acts as a microphone for those who lack access to potentially life-saving cannabis medicines. The group lobbies government officials, provides a platform for patients to share their stories and organizes protests and other events across the United Kingdom. In the years leading up to medical cannabis legalization, advocates at the UPA worked tirelessly to connect patients with the policymakers that make decisions regarding their health.
In October of 2018, United Patient’s Alliance got its first major break — the Home Secretary committed to legalization. Barton, who had been consuming cannabis illegally to self-treat her pain condition, jumped at the opportunity to get a legitimate, legal prescription.
There was one major problem, however. Her doctors aligned with the National Health Service wouldn’t break out their prescription pads. Barton was the first medical cannabis patient in the UK to receive a prescription for the natural medicine. And yet, Barton had to fork over some serious cash for a private doctor in order to access medical cannabis. Even with the money, it certainly wasn’t easy.
“I spent months doing a kind of one-woman clinical trial and marking strains out of ten of the different symptoms and keeping a really thorough pain diary and really almost doing an observational trial on myself to determine what works and what didn’t,” she says. She turned these diligent records over to a private doctor, and it was only then that she received her prescription.
And yet, not all medical cannabis patients have the time, money, and where-with-all to keep such diligent records. “For a lot of patients in the UK who have been to doctors, we’ve had massive issues,” says Barton. “Since legalization, there are posts going up in pain clinics across the UK saying ‘don’t even ask about medical cannabis, we won’t be it to you’.”
UK Medical Cannabis Patients Pay an Arm and a Leg
The state of California first legalized medical cannabis in 1996 with Proposition 215. It took another two decades before cannabis reforms were introduced in the United Kingdom. In what some may see as a cruel bit of irony, the United Kingdom is currently the largest producer of medical cannabis in the entire world. In fact, a report from the United Nations International Narcotics Control Board declares that in 2016, over 95 tonnes of medical grade cannabis was produced in the UK, over 44 percent of the market share.
Unfortunately, none of this cannabis is going toward medical patients throughout the country. Instead, this high-quality medicine is used for research and scientific purposes by pharmaceutical companies. Meanwhile, patients like Barton are required to pay out-of-pocket for newly legalized cannabis medicines imported from Bedrocan, a medical cannabis company based in the Netherlands. Between import fees, the cost of the medicine, and the work with the private doctor, Barton raked up a £2,500 (3300 USD) fee in a three-month time period.
“The cost of it is ridiculous,” says Barton. “The cost of my prescription, just for the cannabis bit, was 400 quid for a month. But, once you’ve added on the import company’s cash that they want to import it here from Holland, that’s an extra £1,000. So, it works out at around £700 an ounce.”
Many patients with serious illnesses already face limited incomes and other medical fees, so the cost for private prescriptions creates a huge barrier for patients all over Brittin. For other medical treatments, the British government absorbs most of the cost via the National Health Service. Unfortunately, however, the NHS is not covering newly legalized cannabis medicines. This is something Barton and United Patients Alliance hope to change.
The biggest hurdle? Financial trusts.
“In the UK, each area has an individual trust and they deal with the funding that happens within that geographical area,” Barton explains. “They put limits on what drugs are going to be allowed to be prescribed within that geographical area.”
The goal of these trusts is to manage costs for government-funded health clinics. The money in these trusts comes from taxation, and each trust faces policy restrictions on the amount of money that can be spent on specific types of medicines and treatments.
“The trusts at the moment are refusing to allow doctors under their area to write medical cannabis prescriptions,” says Barton. “They’re literally terrified of opening the floodgates and there being massive ques and not being able to fund them all.”
Should the NHS begin to cover medical cannabis, patients would be able to access their medicine through government-funded sources. For the time being, however, patients are stuck between sticking with the black market or coughing up thousands for regular access to medical-quality products.
For the time being, the black market still seems like the better option.