Just a couple of years ago, Lucy Stafford was in such agonising pain that she was willing to treat it by any means possible. “I was literally in car parks doing drug deals,” she told BBC Radio 5 Live’s Colin Murray.
The treatment she wanted was cannabis. Medical cannabis is legal in the UK, but it is hardly ever prescribed on the NHS. The 21-year-old student has Ehlers Danlos syndrome (EDS) which affects her connective tissue, and causes her joints to dislocate. Over the years she has dislocated her shoulder just by brushing her hair, and her jaw just by yawning.
When she was 13, doctors prescribed her opioids, which she says did nothing to reduce her pain. “I felt I couldn’t focus, I dropped out of school when I was 15. “I used to sleep 18 hours a day because I was just so exhausted, and so my muscles wasted.” Aged 18, Lucy had a severely dislocated jaw and was taking fentanyl , a powerful opioid which is far stronger than heroin. “I was at the point where I would have done anything to manage my pain,” she said.
It was then that her doctor tried to prescribe her a cannabis-based medicine, but Lucy’s NHS trust refused to fund her prescription. Cannabis-based medicines were made legal in November 2018, to be prescribed by specialists for patients who cannot be helped by other available drugs. But despite the change in the law, almost no prescriptions have been handed out on the NHS. Campaign groups say by not prescribing cannabis medicines, in particular those with THC – the main psychoactive ingredient – the NHS is limiting treatment options for patients.
A Department of Health and Social Care spokesperson said the law was changed in November 2018 “to allow specialist doctors to prescribe cannabis-based products for medicinal use where clinically appropriate, and in the best interests of patients”. But they added: “More evidence is needed to routinely prescribe and fund other treatments on the NHS, and we continue to back further research and look at how to minimise the costs of these medicines.” With the support of her family, Lucy travelled to Amsterdam where coffee shops are allowed to sell cannabis, in order to try it. She said the transformation was instant.
“I can’t describe what it’s like to spend your whole teenage years literally crying yourself to sleep in pain every night, not understanding what living pain-free is like, and then being able to think clearly,” she said.
On her return home she self-medicated with illegal cannabis, getting hold of it by any means possible. In March 2019, Lucy was able to get a prescription at a private clinic, which cost £1,450, an amount she found difficult to afford as a student. Lucy said costs have gone down a little as more private clinics have become available. She is now on Project Twenty21, which subsidises access to medical cannabis for eligible patients, while their treatment is tracked by Drug Science, a UK independent science-led drug charity. Participants need a diagnosis from their GP of a list of eligible conditions, including chronic pain, anxiety disorder, multiple sclerosis and adult epilepsy. This information is passed to an independent clinic which then prescribes the medical cannabis.
Lucy believes that kind of support is vital: “I need it to be monitored by a doctor to make sure that I’m taking the right thing safely.” There is still a cost, Lucy now pays £450 for three cannabis based medicines a month, but she said she has no other choice. “It is literally the only thing that gets me out of bed and being able to work, and being able to study and being able to live a life now.” She said there is no doubt that for her medical cannabis is life-changing.
“I have no idea whether I would still be here if I was on my previous treatment. We were at the end of the line and it was my last hope, so I would say it saved my life.” Drug Science aims to use the data from Project Twenty21 to provide evidence for NHS funding of medical cannabis treatment, something Lucy fervently believes in. “I need this medication and so do so many other patients,” she said.