This time last year, people with multiple sclerosis (MS) were given a glimmer of hope when it became legal for doctors to prescribe medicinal cannabis.
Those hopes have been sorely dashed, as a whole year has passed and we still don’t know of a single person with MS who has benefited.
MS is relentless, painful and disabling, and evidence shows that cannabis could help around 10,000 people with this condition who experience pain and muscle spasms, and haven’t responded to other treatments. Unfortunately, barriers to doctors prescribing the drug mean they must continue to struggle, with no way to manage their symptoms.
Rhona was diagnosed with MS in 1994. A few years ago, she discovered that infusing cannabis in a daily cup of tea helped ease her symptoms, improving her cognition and muscular control. Although cannabis helped her greatly, she hated handing money to a criminal. She also had no guarantee of the strength, purity or quality of what she was buying.
Rhona has now lost touch with her drug dealer, and she hasn’t tried to find another source – she doesn’t even know where she’d start. When the law changed, she felt so grateful but her excitement quickly turned to disappointment when doctors told her they had no way to prescribe the cannabis.
People like Rhona are now slaves to their symptoms. Whether it’s not going out as much as she used to or relentless spasms keeping her up all night, Rhona can’t take the pain away.
Doctors themselves have admitted that they have no idea how to go about prescribing cannabis, and that their patients are suffering as a result. ‘The legalisation of medicinal cannabis has so far not allowed me to help any of my MS patients,’ Dr Eli Silber, a consultant neurologist, told the MS Society.
‘In fact, the current limitations on prescribing and funding actively discourages clinicians from prescribing cannabis, leaving no flexibility for us to act in the best interest of our patients. There is clearly a significant unmet need among people who have not responded or cannot tolerate to other drugs for pain and spasticity.
‘We need to see urgent action so these people can finally access a potentially effective treatment.’
Noeline is another person living with MS who has suffered as a result of the inaction. Her symptoms make her feel tired and ill constantly. On a good day, she can walk, but after a short distance she’ll need to rest for half an hour before she’s pain-free and can set off again. Within 10 minutes, the pain will return. She gets cramps and muscle spasms, which prevent her from sleeping, and the pain can be unbearable.
Noeline had been taking Sativex, a cannabis-based spray licensed to treat spasticity in MS, but the drug isn’t routinely available on the NHS in England due to cost, so her only other option was to pay for a private prescription. Sativex took away her pain and meant she could get a full night’s sleep, but at a cost of £450 for three months’ worth, she was only able to take it for a total of nine months.
As much as she’s been tempted, Noeline hasn’t sought out cannabis illegally. She fears the consequences of being caught – she’s never broken the law, and doesn’t want to become a criminal just from attempting to find some relief. When she asked her neurologist if she could get cannabis on the NHS, he laughed and said it was all a farce. He wouldn’t be able to prescribe it for a good few years yet because of all the red tape.
The change in the law has failed Rhona, Noeline and thousands of others still living in pain.
Like Dr Silber says, clinicians are actively being discouraged from prescribing cannabis, and we’re in a ridiculous situation where Sativex has been deemed safe and effective, but it can’t be made widely available because of its cost.
For more than two years, we campaigned for the Government to make medicinal cannabis available to people with MS. It’s outrageous that a year after the change in the law, people with MS are still resorting to buying drugs on the black market or funding private prescriptions that are beyond their means. The legalisation of medical cannabis was a critical milestone, but it’s clear that there’s still a long way to go before cannabis on the NHS is a reality.
Until the Government takes concrete action to improve access to medicinal cannabis, this law change will have been nothing but a publicity stunt.