There are almost two million people illicitly self-medicating for chronic pain in the UK – we meet a 65-year-old pensioner, who’s suffered from migraines for 40 years, who is one of them.
With a recent Canadian study finding that medicinal cannabis significantly helped relieve pain in cancer patients, it begs the question of when the UK will follow suit in legislation and decriminalisation of the plant.
Jane, 65, whose name has been changed to protect her identity, is one of the many self-medicating with street-bought cannabis. She’s been suffering from severe migraines since she was 20 years-old and has dealt with a lifetime of failed remedies, and horrific side effects from taking painkillers.
This all changed when she started using cannabis as an alternative medicine: “When I got diagnosed with migraines in my early twenties, there was no real medication available that could help you,” Jane told me.
“I had a very bad attack in my thirties. I went temporarily blind, and my neck was in excruciating pain. I was bed-bound in the hospital for five days. The only thing they gave as pain relief was paracetamol and ibuprofen, and I took the maximum dose for almost a year, every day. I ended up getting a stomach ulcer because of the pills.”
Jane first got preventative medication for her migraines in her 40s but unfortunately, nothing worked: “The side effects were awful,” she says. “The drugs made the pain worse and they’d give me heart palpitations, constipation and fatigue. I was in bed three out of seven days of the week.”
She struggled to find effective pain relief until about five years ago, when her son suggested trying cannabis: “I was at his place, he let me have a smoke, and I was having quite a bad migraine at the time. That night I slept so well, and I was shocked there were no side effects. You can relax and the pain in your head subsides, and pain medication isn’t necessary.”
Jane has also been on an NHS waiting list for knee surgery for the past two years. “My knee keeps locking and giving way, and that’s every week at the moment. The pain is just so horrific.”
In the beginning, Jane was prescribed painkillers like co-codamol and codeine to try and ease the pain. However, even after upping the dosage multiple times, both proved non-effective. “It made me feel groggy and like I was in a surreal world really. It didn’t even relieve the pain, it just made me feel nauseous.” Jane also tried creams and steroid injections every six months, but nothing helped.
“With smoking, it’s given me more of my life back. I feel my mind is clearer, I can tackle things better, and I can do a bit of gardening. My mental health is better too.”
Avihu Tamir, cannabis expert and CEO of London-based cannabis clinic Treat It, explains how the plant works to tackle pain: “Cannabis has compounds called cannabinoids (THC and CBD) that interact with our body’s endocannabinoid system. This system helps regulate pain. Cannabinoids bind to receptors in the nervous system, changing how we perceive pain. THC is mainly responsible for pain relief, while CBD has anti-inflammatory properties.”
Tamir argues the medicine should be broadly available as pain-relief, due to its effectiveness on various types of condition – namely neuropathic, cancer and chronic pain – and also because it is generally safer than any other pain medications such as opioids.
He also insists cannabis has a lower risk of dependency and side effects, and that patients often prefer it over painkillers because of this.
Prescription vs. Illegal Cannabis
For Jane, a pensioner, medical cannabis is too expensive to obtain, and getting an NHS prescription for it seems near impossible right now. Instead, her son is helping her by supplying her with street-bought cannabis.
Amidst a cost-of-living crisis, patients who are chronically ill, pensioners, or unable to work, are struggling to fund their private prescriptions. A patient survey from PLEA (Patient-Led Engagement for Access) found that 59% of patients are using benefits to fund their private prescriptions.
The recent coverage of parents Matt and Ali Hughes struggling to afford medical cannabis oil as a treatment for their epileptic five-year-old son, Charlie, is a testimony to the ongoing problem in the cannabis industry.
The couple have been denied a prescription from the NHS, despite the 2018 law change which allows for medicinal cannabis prescriptions to be issued, and were spending £600 a month on Celixir20 (cannabis oil) through a private clinic.
For Charlie, this medicine has been life-changing; he was having more than 120 seizures a day and is now seizure-free. However, as of the start of this year, updated guidelines by the Medicines and Healthcare products Regulatory Agency (MHRA) made it illegal to import Celixir20, and Charlie’s parents are forced to rely on the only other alternative, Bedrolite, which costs the family over £1,000 a month. They fear they will be forced to stop the treatment, as it is too expensive to obtain.
Matt and Ali spoke to the BBC in late 2022: “We have had to move to a bungalow because of Charlie’s mobility needs so we have a bigger mortgage and we have to pay for private therapies. My wife and I both work but we just can’t find the extra money.”
They worry that without the funds, Charlie will regress: “Charlie is hitting milestones we thought would never be possible. He is nearly walking, he has started school and his happy personality is shining through, but all that learning could end because the seizures wipe his memory,” Matt and Ali told the BBC.
“As a parent, I feel completely helpless,” Matt says. “We are in absolute despair. Charlie is finally stable in his health but I feel like he will be back in intensive care from next year. There is nothing we can do and I lie awake worrying about it every night.”
Matt and Ali Hughes are one of many families struggling financially due to the costs of medicinal cannabis. They are part of a non-profit campaign group End Our Pain, run by families with children who are epileptic or suffer health conditions that cause seizures.
End Our Pain has been fighting for more affordable and easily accessible cannabis since 2019, and in April of this year, the families requested £1.4m from Health Secretary Steve Barclay to be used for medical cannabis research.
Campaigner Elaine Levy, whose daughter has epilepsy, had to sell her home to pay for the monthly costs of £2,200 for medical cannabis. She recalls that when Matt Hancock served as the health secretary, he pledged to allocate funds for research, however, over the years, the government has consistently disregarded the campaigners’ requests.
Elaine told Sky News, “We were assured an observational trial and a randomised control trial would be conducted to assist children currently using medical cannabis and gather data for those who aren’t.” She stated that the organisation have been ignored by officials since.
According to the UN International Narcotics Control Board, the UK produced 320 tonnes of legal cannabis in 2019 – that is 75% of the total amount produced worldwide (468.3 tonnes) – making it the world’s top producer of the drug for medical and scientific purposes.
Despite this, only a very small number of people can receive a prescription for cannabis under the exceedingly restrictive NHS guidelines, and others are forced to pay out of pocket or resort to the black market.
To put it in perspective, between 2018 and 2022, while more than 89,000 cannabis prescriptions were issued through private clinics; the NHS issued just five.
Since not all cannabis products have been licensed in the UK, GPs need to go through a complex process of applying for funding or requesting the NHS trust directly, to fund the prescription.
In addition, many doctors either refuse to prescribe cannabis or do not have the correct knowledge to pass on to their patients – a 2022 poll found that 84% of Britons are unaware that medicinal cannabis is legal and able to be prescribed, and 70% of the respondents believed there is a lack of education and awareness about cannabis’ medicinal properties. The majority surveyed also expressed there is a negative stigma surrounding the plant.
There are many medicinal cannabis patients that are sourcing through private clinics, who state the supply is inconsistent and unreliable, forcing them to turn to the legacy market at times when clinics are having delays or are out of stock.
One patient told Cannabis Health that “people are choosing discretion, reliability and the easiest route to access.” People turn to the illicit market as they often know and trust their supplier, and have seen the plants in person – some even find it best to grow their own, rather than turning to the legal market, which speaks volumes of the barriers confronting the industry.
The disruptors fighting for change
Gary Youds, a cannabis campaigner deemed ‘heroic’ by his community, was sentenced to three years in February for supplying Alan Tisdale, a terminally-ill cancer patient in Birmingham, with homemade cannabis oil for free.
Youds has been a prominent figure and has advocated for cannabis legislation over the past twenty years, which has led to him being arrested more than 50 times for his activism. Described as ‘non-violent’ with ‘wonderful morals’, he’s known for opening Liverpool’s first covert, non-profit cannabis coffee shop, The Chillin Rooms, in 2005.
Gary spent years fighting for legislation, decriminalisation, and a right to grow the plant after consuming medical cannabis for his arthritis, chronic back pain, and mental trauma brought on by his time in prison and numerous violent police raids on his home and cannabis cafe.
In a statement crowdfunding his legal fees, Youds stated, “My mission is to give everyone who wants it, access to the safest possible cannabis supplies, especially those who need cannabis for the relief of pain and suffering.”
Patient Alan Tisdale sadly passed away a few months after Gary’s arrest. His son James spoke with the Liverpool Echo, expressing his gratitude towards Gary Youds: “He helped us, he genuinely helped us – more than most people. He would not allow us to have any kind of financial transaction – he wouldn’t charge us, he wouldn’t even let us pay for his train ticket.”
Youds was charged with production, possession, and intent to supply cannabis, with the judge believing that he was ‘commercially benefitting’ from his cannabis farm.
Such cases touch on the importance of decriminalisation and de-penalisation of cannabis-related offences, and the need for policy change, NHS funding and support of vulnerable, low-income, patients suffering and dealing pain.
Patients who use it believe that cannabis should be widely and easily accessible, affordable, and consistent in quality and supply, in order for them to turn away from the illicit market.
Jane insists cannabis should be broadly available, especially to the elderly and chronically ill. “Now at this stage in your life, you just want whatever you can to get you through,” she says.
“I think of the people that are in their seventies, where they’ve been told ‘Well you won’t get a joint replacement’ because of the way the NHS is, because you’re over 60 and that’s it. Well, it isn’t. When you’ve worked all your life, and paid your taxes to the government, you’d think the system would be there to help you and support you.”
The plant has been life-changing to many people in the UK, with inspiring stories of how an elderly man suffering from arthritis was able to dance with his grandchildren again, or how a woman who was forced to quit her job due to excruciating pain caused by her endometriosis, was able to start working again after being prescribed cannabis.
Further, medicinal cannabis is an effective alternative to opioid prescriptions, and studies show that legislation is reducing codeine demands in the US, with another survey finding that 61% of patients out of 2,900 questioned, replaced opioids/benzodiazepines with medicinal cannabis.
It is predicted that by 2024, the UK cannabis sector may generate up to £2.31 billion in revenue and create up to 96,000 jobs, according to an analysis published by Prohibition Partners. The report detailed the regulated market sector possesses the capacity to earn between £1bn and £3.5bn in tax revenue every year.
The potential for the cannabis industry’s growth comes with the hopes of reduced crime rates, a safe and controlled supply, and more opportunities to fund schemes that can help low-income patients have access to affordable medicine.
As Germany prepares to legalise weed for personal use, campaigners in the UK still fight in hope to be given the right to possess and grow the plant. In light of the growing amount of evidence supporting the positive effects of cannabis on chronic pain, seizures and sleep disorders, the demand for policy changes in the UK has reached a critical point.
For people like Jane, who relies on her son obtaining cannabis for her, there is no other option but to turn to the legacy market.
“Without my son, I don’t know where I’d be. I’d probably be just stuck inside a lot. It affects your relationships. It’s not fair on my partner either,” she told me.
Cannabis has given her the ability to go out more and enjoy retirement, unburdened by the looming fear of having a debilitating migraine or chronic pain affecting her movement.
Jane sighed over the phone, “We don’t want to be stoned. We just want to feel like we can manage.”
Featured image by Thought Catalog via Unsplash CC