My £250-a-month cannabis fix that saves me from the misery of MS

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My £250-a-month cannabis fix that saves me from the misery of MS

Penny Fitzlyon was in hospital to undergo an MRI scan for her multiple sclerosis when she overheard a conversation that made her blood run cold.

“One of the nurses turned to her colleague and said it wouldn’t be long before I needed a wheelchair,” she recalled. 

“I was just 39 and had been diagnosed with MS two years earlier. I had been on opioids but none seemed to help: my legs were in agony, my balance terrible, my speech slurred and my eyes popping in all directions. I went home and spent the next couple of days doing research on my computer. That’s when I discovered people with MS were turning to cannabis.”

But Penny, 55, a hard landscaper who had designed several gardens for Hampton Court Flower Show before her 

disability caused her retirement, had no idea how to access the illegal class B drug. She went to a local MS meeting where a herbalist spoke about his “clinic”, called THC, selling cannabis to people with MS. Penny got a letter from her GP confirming her diagnosis and set out from her flat in Richmond to THC in King’s Cross. It was a challenging journey she would repeat on unsteady legs every month until the authorities shut down THC a few years later.

By then Penny was a convert and she found new dealers to source her cannabis, a drug she insists has “totally transformed” her quality of life. As she talked to the Standard in her living room, teetering and struggling to retain her balance when she rose to offer tea, her speech slow, she took a puff of “lemon hybrid” cannabis with 14 per cent THC potency and visibly began to relax. 

“The impact is immediate,” she said. “I can feel my back straightening, as if the bits of string that hold my limbs together are being nicely tightened. Without my weed, I can be in too much pain to make it to the kettle in the kitchen… My speech, too — if I haven’t used cannabis, words fall off the back of my tongue and never make it out of my mouth.”

Penny is unafraid to be photographed with cannabis because she wants to show up government hypocrisy, she said.

“The Home Secretary legalised medical cannabis last November, but they created a two-tier system. If you are rich, you can get a private prescription which will cost you over £1,000 a month to import. But if, like me, you are on disability benefits and can’t afford that, you have to grow your own or go to a black-market dealer.

“I spend £250 a month for one ounce, enough for the six joints a day I need to function. So, because I am poor, I am forced to become a criminal. How is this fair?” 

Penny is far from alone. There are about 100,000 people in the UK with MS and one in five have used cannabis, according to the MS Society. 

Genevieve Edwards, of the MS Society, said: “It’s simply wrong that people with MS are being driven to break the law to relieve their symptoms. MS is relentless and disabling and cannabis can treat pain and muscle spasms.”

But she said clinicians’ “hands are tied” and the National Institute for Health and Care Excellence (Nice), which sets rules on the use of medicines in the NHS, has refused in draft guidelines to recommend cannabis for MS. “We’re calling for a cross-departmental strategy to address these barriers. Changing the law was a landmark moment, now the Government must follow through to make medicinal cannabis available on the NHS.”

In total, an estimated one million people in the UK use cannabis illegally for medical purposes, mostly for chronic pain. A September 2019 survey, commissioned by the Conservative drug policy reform group, found that just 17 per cent of the public support prosecuting patients for unlawfully using cannabis to self-treat medical conditions. 

A condition that hits 1 in 1,000

What is it?


A condition that affects the brain and spinal cord causing problems with balance, eyesight, speaking, walking, involuntary muscle contractions and limb coordination.


 


Who gets it?


One in 1,000 people in the UK have MS, with women twice as likely to get it. Most people get first signs between 20 and 40 and although it is not hereditary, incidence rises to one in 100 if a close family member has it. Cause is unknown.


 


How does it progress?


Ninety per cent of people with MS have the relapsing-remitting form. One or two relapses every two years is typical. It is not fatal but it is a lifelong condition and sufferers can live a relatively normal life span. 

Yet prosecutions of medical cannabis users continue to happen. The latest person to be arrested is MS sufferer Lezley Gibson, 55, a grandmother living in Cumbria charged with growing cannabis, despite having a lawful UK prescription for buying medical cannabis. 

Lezley, who was diagnosed with MS at 21, explained: “I started getting pins and needles from the top of my head to the tips of my toes. It progressed to my right side being completely paralysed. I lost the sight in my right eye, my speech was slurred, you’d think I’d had a stroke.”

Today her sight is restored, her speech is normal and she feels “symptom free”. “I put this down to cannabis,” she said. 

Like Penny, she lives on disability benefit and cannot afford to buy cannabis on private prescription. But she could face up to 14 years in jail if found guilty. She is seeking to raise £30,000 via crowdfunding for her legal costs, with the case due to be heard in January. 

Campaigners say that in Germany patients experienced similar barriers to cannabis-based medicines when it was legalised in 2017, and it was only after legal battles that legislation was passed allowing doctors to prescribe cannabis, making it affordable through their healthcare system.

They also point out that in US states where cannabis is legal for medical purposes, prescriptions for opioids have fallen 30 per cent. 

Penny is adamant she would rather risk arrest than give up the relief that cannabis offers. “Even if they take away my cannabis, I still have this brain lodger called MS, so while I have that, which is forever, I need my cannabis.” 

She turned on her Volcano vaporizer and inhaled a bag full of THC. “Now watch me,” she said, leaping up. “With the help of cannabis, I can do four steps in a straight line.”

She walked steadily across the room. “One, two, three, four,” she counted triumphantly. She turned and looked at me plaintively.

“Can somebody please tell me: Where is the humanity? Where is the compassion? Why is the Government and the NHS and Nice being so cruel?”

Full story is available here.