Meet the women using medical cannabis for chronic pain

After I close my laptop for the day, and settle into my sofa with my heating pad, ice pack and a new Netflix show, I load my vape with a serving of cannabis, and feel the cloud of chronic pain lift, just slightly, the nausea subsides and the ability to still sit and rest, becomes easier. I live in Amsterdam, a city predicted by a reputation for recreational drug use and sex work. I buy cannabis from a sweet older couple who run the local coffee shop (the dutch phrase for dispensary) in my neighbourhood. In line to collect cannabis is a man in a postman’s uniform, a woman with a crutch, and some American students. There is no stereotypical drug user here. The Netherlands has decriminalised cannabis, and although it is an ongoing and complicated issue, for now, it is accessible to most, and helping me reduce my reliance on prescription pain medications for chronic, debilitating pain. 

It is near impossible to sleep when your body fizzes with pain. It is difficult to work, to do chores, and, in general, live your life when movement and even stillness feel like a never ending battle with your body. Chronic pain — a symptom of a myriad of conditions, from endometriosis and fibromyalgia to myalgic encephalomyelitis (ME) and plenty more — is notoriously difficult to treat. Many of the people living with these conditions have a record of being failed by their doctors and medicine at large, which has detrimental effects. A 2011 study(Opens in a new tab) cited that people living with ME, a chronic, incurable, multi-system disease hallmarked by physical incapacity and pain caused by a viral infection such as glandular fever or pneumonia, “has a greater impact on functional status and well being than other chronic diseases such as cancer.” The most recent comprehensive survey of chronic pain was collected in 2017 and established 15.5 million people in England (Opens in a new tab)(34 percent of the population) live with chronic pain.

I’ve lived with ME for nearly six years, and have tried a lifetime’s worth of treatments in the quest to feel just a little better, like high dose antidepressants and gluten free diets. I’ve also spent a lot of my own money on alternative medicine, because the NHS has no viable and safe treatment(Opens in a new tab) options available for this incurable disease. Traditional medicine will pass out pills, but over time some people (myself included) build tolerance(Opens in a new tab), develop stomach ulcers,(Opens in a new tab) or become sick of the foggy brain and other side effects(Opens in a new tab) they bring. After a laundry list of drug prescriptions, I felt tethered to the pills that caused new symptoms of their own, and was open to trying yet another alternative that would let me escape the brain fog and sleepless nights.  

“It is near impossible to sleep when your body fizzes with pain.”

Cannabis is a drug known best for its recreational use, there are many connotations with cannabis that perhaps you harbour from your youth; trying it under the slide at a local park, at your first gig, or a weekend trip to Amsterdam. Cannabis is a flower, a naturally grown substance that is being legalised in many countries around the world, European countries such as Portugal are decriminalising cannabis,(Opens in a new tab) and acknowledging its role as a medicinal tool for many people. However, in the UK, government scare tactics continue to tell us that weed is the first step to becoming a person with a drug addiction(Opens in a new tab), and many members of the Conservative party want the drug reclassified as Class A group(Opens in a new tab), to match cocaine and ecstasy. Presently a Class B drug under the 1971 Dangerous Drugs act, cannabis it is illegal to possess any amount of cannabis. At present, there are hundreds of people in prison for possession of a personal supply of cannabis(Opens in a new tab). A first time offender will be issued with a warning, if caught again there is a £90 ($108) fine, but after that the police can prosecute an individual(Opens in a new tab) with a sentence of 28 days in prison.

The legal battle over cannabis

Nov. 2022 marked the four-year anniversary of a landmark legislation change(Opens in a new tab) you likely never heard about. In 2018, the government used a report from the Advisory Council on the Misuse of Drugs (ACMD) to change the scheduling (categorisation of a drug that determines the punishment for possession and harm potential) of cannabis. From Nov. 2022 medically prescribed unlicensed cannabis products were legalised for a limited list of conditions in the UK: Dravet syndrome, Lennox-Gastaut syndrome, multiple sclerosis, and nausea developed as a result of chemotherapy treatment. The law change came about following two court cases of childhood epilepsy in which the families of Alfie Dingley(Opens in a new tab) and Billy Caldwell(Opens in a new tab), both aged six, alongside doctors and activists, proved that the plant, when ingested, drastically improved the physical condition of these children, and were issued with an “exceptional licence,” to possess a THC based cannabis oil acquired in Canada. 

However, despite much hope from those campaigning for the legalisation of the drug, the NHS parameters for prescription of cannabis remain extremely limited, with very few people able to access a regular prescription. In 2019 the NHS issued only 18 prescriptions for medical cannabis(Opens in a new tab). However, there is a much longer list of chronic health conditions that can benefit from cannabis, and can also be prescribed by private practices, which is creating a two tier access to the treatment. 

Charli, whose surname will not be shared for privacy reasons, lives with a traumatic brain injury, or TBI, which causes insomnia and chronic pain. She splits her time between London and Portugal. While she has access to cannabis in Portugal — the country decriminalised personal possession of cannabis, so holding your own supply holds no legal risk — she cannot use it legally in the UK. She attempted to acquire an NHS prescription for the medication but was met with barrier after barrier: “My area, Southwark in London, will only prescribe it for cancer and epilepsy. Although my doctors were receptive after I really pushed and showed them my own research, they landed on the frustrating response that ‘the country just isn’t there yet.'”

How medical cannabis works

Doctor and pain specialist, Dr. Neel Umapathy, who works with patients to provide medical cannabis for a range of conditions through the private practice, Mamedica in the UK, explains that medical cannabis prescribed by clinics has a calculated combination of CBD and THC, the two main components of cannabis flower, for the most effective pain relief. Umapathy explains that: “Cannabis interacts and stimulates the body’s endocannabinoid system (ECS) which is made up of two main receptors: CB1 is located mainly in the brain and CBD2 which is mainly expressed in immune cells in the body.” When THC interacts with this system, it binds to our receptors and blocks pain transmission — providing the user with pain relief. Umapathy also says that long term use of cannabis can reduce chronic inflammation in the body, which also contributes to pain reduction. He explains that for many chronic pain sufferers, “THC and CBD work in synergy to support in bringing balance to the body.”

CBD oils have become popular in the last five years as a tincture sold in various health stores, but they are sold legally because they contain no or extremely low presence of THC, the component most known for giving a user the ‘high’ feeling. The strength of what’s sold on the high street and the lack of THC which Umapathy indicates is a necessary part of the plant for pain management, means the products available are nowhere near as effective as the doses prescribed by a medical professional.

So, where does that leave chronic pain sufferers seeking help? After over a decade of Conservative rule that has cut funding across the NHS(Opens in a new tab) and community led health services, combined with the ongoing pandemic crisis, The NHS has record delays(Opens in a new tab) for treatments and management of conditions like endometriosis(Opens in a new tab). Many chronically ill people are using private care(Opens in a new tab), including to access drugs like cannabis. Discussions in online disabled communities are more often about seeking private care both in the UK and abroad for endometriosis surgeries or experimental treatments being trialled elsewhere. A rise in general subscriptions to paid-for healthcare (Opens in a new tab)also demonstrates the UK citizens’ need for better care, now.  

Although cannabis prescriptions are extremely limited on the NHS, private practitioners like Umapathy, are able to prescribe cannabis for pain relief for many more chronic conditions than the four listed by the NHS. However, access to private healthcare is predicated on privilege, those who can afford to pay, and those who must wait in the NHS lines.

The way private clinics circumnavigate the strict NHS prescriptions rules is by diverting from NICE (the national institute that provides guidance for improving UK health and social care) guidelines for specific conditions NHS doctors are required to follow more stringently. The NICE guidelines are reviewed at a much slower rate than advances in medical studies, for example the endometriosis guidelines have not been reviewed since 2017, and list over the counter medication like paracetamol as an adequate pain management tool.(Opens in a new tab) Private doctors can use their own judgement and more recent research, to offer a more tailored treatment plan,to individual patients, which includes trying experimental treatment offerings that are not listed as cures or management drugs for the specific illness a person is diagnosed with.

Jon Robson is an entrepreneur and the founder of Mamedica(Opens in a new tab), one of the private medical clinics in the UK, prescribing cannabis for a wider range of chronic conditions. He spoke to Mashable in order to demystify the prescription process: “In order to receive a prescription, a person first completes an eligibility form online. From here, if they meet the eligibility requirements: the patient has tried two or more licensed medications or treatments which have not provided satisfactory benefit and has no previous record of psychosis and schizophrenia), then an online consultation with a specialist will be scheduled.” Perhaps in part because of the cultural reputation of cannabis, Mamedica and other clinics impose a rigorous onboarding process before accepting new patients, including identification checks and evidence in medical records. Those with a record of psychosis and / or schizophrenia are more susceptible to future mental health issues(Opens in a new tab) whilst using cannabis, therefore there is reason to be cautious. 

Following an in depth conversation with a specialist doctor combined with approval of eligibility, a prescription is issued. The prescription is then delivered to your door securely. In my own experience, there is much less rigour involved in acquiring a month of Codeine, which is legal and highly addictive(Opens in a new tab), than what Mamedica and similar clinics ask of their patients, which could be another indicator of the wider view of what we understand as acceptable pain relief sources. 

Endometriosis and medical cannabis

Chessie (name changed for privacy purposes) is 25 and lives with endometriosis. She initially sought out an alternative to prescription opioids after a COVID infection flared her chronic pain and left her with a high tolerance for the drugs her doctor gave her, and a fear of future opioid addiction: “I felt really uncomfortable with the amount of Tramadol I was taking,” she says. “I was hoping for something that would effectively replace my use of opiates and support the other pain management tools I was using, like pelvic floor physio and nerve blockers.”

Opioid use carries risks. We look to the states to understand the devastation that prescription painkillers have led to within hundreds of communities(Opens in a new tab), but the UK isn’t experiencing the same realisations despite having the highest number of prescription opioid users worldwide, according to research in 2019(Opens in a new tab), but we collect little data on the number of users addicted to prescription medication. However, my own experiences with tramadol rings true with Chessie’s, and I know we are not the only ones. 

Chessie heard about prescription cannabis from the online chronic illness community, and booked a £30 ($36) appointment with a private clinic. After passing the onboarding process, she paid £88 ($106) for a month’s supply, 10 grams of cannabis flower, which she smokes with her vape. Unlike recreational cannabis, or American cannabis dispensaries, UK private clinics only offer a limited range of cannabis strains that they compile as most effective for pain relief. Chessie consumes her cannabis with a dry herb vape (a different technology to a nicotine style vape) which she bought on Amazon, and cost her £80 ($96). 

“For the four months I have had the prescription, I’ve not had to take any opiates.”

She explains, “I actually use much less than the average daily dose, and my first 10g lasted me around 2.5 months. The flower is vaped at a controlled temperature instead of smoked, which is a completely different experience to what you may know from recreational use. Every time you need a new prescription, a follow up appointment is required (costing £50). This means that you have regular check-ins with your doctor about how you’re progressing, and you are very supported throughout.”

When asked what cannabis has done for her life, Chessie’s answer is simple: “for the four months I have had the prescription, I’ve not had to take any opiates.” Along with pain relief, Chessie cites a renewed ability to enjoy food, as the cannabis helped her chronic nausea, as well as an ability to connect more with her physical body, something notoriously difficult when chronic pain causes dissociation. 

“I fear [the doctors will relate] my symptoms back to cannabis, even though I know it is not the reason, and then manage to blame me for causing my own pain.”

Sarah, a chronically ill woman living in Belfast who has endometriosis, adenomyosis (a condition where the tissue that lines the uterus grows into the uterine muscle wall) and Crohn’s disease, was dismissed from her regional pain clinic after they prescribed her a pain medication that she wasn’t able to tolerate. On a nearly four-year waiting list for a pelvic pain specialist, she was desperate to try something to improve her daily life. So after seeking advice from other chronically ill friends online, she pursued a private clinic prescription like Chessie. Although not the silver bullet for all illness symptoms, Sarah notes improvements from using cannabis: “With cannabis, I sleep through the night now,” she says. “It is not as good at reducing a very extreme flare; it works better at easing daily pain. I have been told it builds up over time and daily usage helps it. I have only been on it for two months, so it is a work in progress, it’s just taking the edge off right now.”

“With cannabis, I sleep through the night now.”

The future of medical cannabis

Both Chessie and Sarah say their friends and family are supportive for the most part of this new pain relief, but they are both conscious of who they share it with. Sarah hasn’t informed her own specialists, although says it is on her medical record for them to view. “I fear [the doctors will relate] my symptoms back to cannabis, even though I know it is not the reason, and then manage to blame me for causing my own pain” — something that has happened before — “then will not want to help me find relief from that symptom,” she says. Sarah’s fears speak volumes to the deep distrust so many of us have for institutional medicine that has failed us over and over again, which is another reason so many are seeking alternatives.  

Those 15.5 million people currently living with chronic pain(Opens in a new tab), could have a chance to reclaim parts of their lives if they and their NHS doctors were educated and offered access to medical cannabis. As long as cannabis remains only practically available to those that are able to pay, there will be a two-tier system of pain relief: Those who can afford to purchase it, and those left to the mercy of the NHS and our country’s cultural reluctance to reckon with outdated stereotypes.

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