Marijuana Today
debilitating medical condition – Ehlers Danlos syndrome – that affects her connective tissue, causing her limbs to dislocate and muscles to spasm. When the Observer interviewed her last week she had dislocated her shoulder that morning, a common occurrence.
And yet she was disarmingly, joyously upbeat.
The reason? She is one of the very few people in the UK to have been issued with a private prescription for medical cannabis since the drug was legalised a year ago last Friday, something that she and her doctor claim has transformed her life.
Having suffered lengthy bouts of chronic pain since she was 10, Stafford has spent most of her teenage years on strong opiates, most recently fentanyl, the synthetic analgesic 50 times more potent than heroin.
Down the years, she has had numerous operations and treatments for lower-back pain, including steroid injections, and has been prescribed courses of the powerful painkiller tramadol, to which she became physically dependent. Her vomiting was so severe she was admitted to hospital for intravenous rehydration. She has endured multiple sepsis and urinary tract infections and for much of her life has needed a catheter. Long stays in hospital have been common.
“Coming off fentanyl was the best thing that ever happened to me,” said Stafford, who since she started taking medical cannabis has begun studying with the Open University. “This prescription saved my life.”
She talked about dislocating her shoulder as if she had stubbed her toe.
“Before cannabis I would have had to take a large amount of opiates. I would have been … crying in pain for most of it, whereas now I am able to function. Sure I need to rest and take it easy but it has made living with my condition manageable and lets me function and have a life, something I never expected to have.”
It was when attempts to surgically fix her constantly dislocating jaw failed, causing it to go into spasm for two months, that Stafford’s NHS pain-management specialist tried to prescribe her the cannabis-based medicine Sativex, normally used to treat people with multiple sclerosis.
“It was an act of desperation, they couldn’t increase my fentanyl any more,” Stafford said.
Her local NHS Trust refused to pay for the medicine, so she tried self-medicating with illegal cannabis. Worried about being arrested, she paid for a private consultation and is currently one of only about 100 people in the UK to have a private prescription for medical cannabis.
Experimenting with different strains of cannabis, oils and vapes has produced life-changing results.
When her joints dislocate, Stafford claims that vaporising cannabis reduces her pain levels from a 10 to four within minutes. And she sleeps. Properly. For the first time in years.
“Chronic pain means you don’t sleep, you can’t meet friends, be with your family, you can’t think, you don’t have your brain and then when you add in opiates you become zombified. A year ago I was a very, very different person. On my medical notes my doctor described me as having transformed. After so many years of being on opiates and in uncontrollable pain, I accepted that I was going to be in so much pain for ever. I had lost so much of myself. I had no ambition for what I would do. All I did was exist.”
She speaks with almost childish wonder at the change in her fortunes.
“I feel like I’ve become myself for the first time in my life. It’s absolutely unbelievable. I’m at university, I’m living my life, I’m seeing friends and just doing all the things that I hoped I would do. If you had told me my life would have been like this a year ago I would have laughed.”
But a huge problem looms on the horizon: Stafford’s new life is financially unsustainable. She paid £250 for a private pain consultant to write her the prescription for medical cannabis, a significant sum for a student. But this is nothing compared with the £1,500 a month she was initially paying for her various cannabis products.
Since then the price she pays for her medicines and oils has come down to £800 a month but it is still a huge amount to find.
She is outraged at having to pay so much money for something that she believes should be provided on the NHS.
“The law changed a year ago and you would expect some patients would by now have access [to medicinal cannabis on the NHS] but literally nobody has, unless they are willing to go into debt for it. It’s disgusting.”
When the law was changed 12 months ago, scientists, researchers and campaigners hailed it as a “landmark victory”. The then home secretary, Sajid Javid, said: “We have now delivered on our promises … we will work with the NHS to help support specialists in making the right prescribing decisions.”
ho would it help?
The number of people in the UK suffering from conditions that are said to be alleviated by medical cannabis
Anxiety and depression One in four people (source: Mental Health Foundation)
Cancer 360,000 new cases each year (Cancer Research)
Crohn’s disease 146,000 (Crohn’s & Colitis UK)
Dementia (including Alzheimer’s) 850,000 (Alzheimer’s Society)
Epilepsy More than 500,000
Fibromyalgia 1.5-2 million
(Fibromyalgia Action UK)
HIV/Aids 100,000
(National Aids Trust)
Parkinson’s 145,000 (Parkinson’s UK)
Rheumatoid arthritis
400,000 (National Rheumatoid Arthritis Society)