In November last year, home secretary Sajid Javid introduced legislation which made it possible for people to legally access cannabis for medical reasons. At the time, campaigners hailed it as a landmark victory – the Conservative government had typically taken a hardline stance on rescheduling drugs – and scientists and researchers welcomed the change. People around the UK, who had been self-medicating with cannabis for years, expected the law to finally make their lives easier.
Three months later campaigners say that only handful have actually received a medical cannabis prescription since November 2018, and that the few who did manage to get a prescription have not actually been able to access medical cannabis – due to problems with persuading specialists that cannabis is the right option, obtaining licenses for cannabis-based products, and even transporting them once they’re in the UK.
The problem isn’t necessarily the law: the interim guidelines, devised by the Royal College of Physicians and the British Paediatric Neurology Association, were written with far less time than specialists are usually given. The law makes no restrictions on the kinds of products that can be prescribed – except that they can’t be smoked – but experts are used to having large amounts of data from randomised controlled experiments when they’re creating new guidelines. The main problem with creating those guidelines was that cannabis had been until recently labelled as a Class A drug with no medical value, which made it difficult to carry out experiments on its properties. The range of psychoactive ingredients within cannabis and derivatives products can also make scientific study tricky, as some of the component parts of one cannabis product may react differently in another dosage, or even if grown in a different way.
“The main issue here is two-fold: that [specialists] don’t value or trust foreign data, and that traditional ways of studying medicines won’t necessarily work for cannabis,” says Alex Fraser, patient access specialist at Grow Biotech, a medical cannabis research and advocacy firm, over email “We’ve seen a huge reluctance from doctors and pharmacies to risk their licenses by facilitating access.The vast majority of people – except for those individual children – are still being forced to rely on the black market to source their medication.”
“Actually, the politics of this has left us with the opportunity to have Europe’s most open and accessible medical policy on cannabis,” says Jon Liebling, the political director of United Patients Alliance, a group focused on helping patients access cannabis. “But the guidelines – well, those writing them were given three months between the announcement and the delivery of the guidelines, and the guidelines don’t leave any room for specialists to have confidence that they can prescribe this.”
Cannabis is currently treated as a Class B drug under the Misuse of Drugs Scheduling Act of 2001. Before the law was changed in November, there was a string of high-profile cases of children who needed medical cannabis products to survive – such as Alfie Dingley and Billy Caldwell – who were granted exceptions by Javid. These individuals still have access to specific products, but for everyone else who was hoping to use medical cannabis products, the path is still very difficult. A recent report on the state of cannabis in Europe found that doctors in the UK didn’t know how to prescribe cannabis because they felt that they weren’t informed enough. Currently, medical cannabis products aren’t licensed for distribution or prescription; each prescription seems to happen because of one patient talking to a specialist about medication that has previously worked for them, and then trying to access it through legal means.
“In practice, these prescriptions won’t be available on the NHS,” says Henry Fisher, chief scientific officer at Hanway Associates, a drug policy think tank. “These products are referred to as ‘unlicensed specials’ – so there’s been confusion and challenges with getting to grips with that regime. Doctors, for good reason, won’t prescribe specials unless there’s a very good reason for them to do so.”
An NHS England spokesperson said, “The decision to prescribe medicinal cannabis is a clinical decision for specialist hospital doctors, made with patients and their families, to determine the most appropriate medication or course of treatment for an individual patient.”
An image circulating on Twitter, from the Royal Derby Hospital, stated that “pain consultants and allied staff will not be recommending or prescribing medical cannabis for chronic pain patients.” A spokesperson for the Royal Derby Hospital confirmed that the image was genuine, and said, “We follow national guidance from NICE [The National Institute for Health and Care Excellence] and NHS England to support good clinical practice and effective prescribing.”
“Campaigners were so focused on pushing the government to allow access that we didn’t expect the RCP or pharmacists putting up further hurdles,” says Fraser. “We knew there would be a period where the education system needed developing for health professionals – but this has not yet been rolled out, and we don’t know how long it will take, or how responsive they will be.”
One patient, Jorja Emerson, is two years old and received a prescription on the NHS – but no pharmacies stock it, or were willing to shoulder the responsibility themselves for importing it.
Another, Carly Barton, is still waiting to actually receive her products. She went through a private pain specialist, and the medication itself will cost her roughly £2,500 – even though the actual product itself is far less expensive.
“The prescription has to be written to a very specific level of detail, and then because it’s Schedule 2, it has to be written on pink paper, and the pharmacy that was going to import it needed a special license,” says Liebling.“And then you have to get the package size – either 25 or 30 units exactly right – and then the delivery drivers, and the companies that are involved in delivering it, like shipping companies, [need] special licenses too.”
Many of the products also have expiry dates, even though the recommended prescription dosage under these guidelines is roughly enough for a month. However, the current prescription and delivery process takes about eight to ten weeks, according to different estimates. This is not likely to change until more people get prescriptions, and wholesale importers and pharmacies start importing products in bulk – which might bring down the costs and smooth the process over.
“It’s easier to prescribe in the private sector because money doesn’t come into it – for example, some NHS trusts might not have wanted to open the floodgates to funding medical cannabis,” says Michael Barnes, a neurologist and cannabis expert. “There’s less constraints, but it’s a problem because effectively a lot of the population won’t be able to access it because of [its] cost.”
Opinions are split about possible solutions.There’s no data available about who has been able to get a prescription on the NHS – so far, campaigners are estimating three or four people as far as they’re aware. The NHS has set up a monitoring unit, which will publish its first results in March 2019.
NICE will release new guidelines towards the end of 2019, which should help doctors make more informed decisions around cannabis prescription. “We’re hoping that individual doctors will prescribe, and see that once they’ve done it once, and it’s worked, so it’s a useful medicine,” says Barnes. “Then it will pick up: for example, in Germany, it took two or three years for the medical profession to catch up.”
As it stands, the current situation around the prescription of medical cannabis could become a self-perpetuating cycle. Not enough scientific data could lead to restrictive guidelines, which leads to less prescriptions for people who need them, which means less evidence of their value – and so on. But patients have been self medicating for years – often trying different products and seeking help from online forums or communities – although that information isn’t formalised through studies.
“The interest in medical cannabis prescriptions isn’t happening in a vacuum,” says Fisher. The difference between what users and specialists know will require significant effort to bridge. For patients in the UK who are still struggling to access medical cannabis, it might not be enough.