A year after cannabis-based medicinal products were legalised for prescription in England, Wales and Scotland, new guidelines have been issued about how – and for what – they should be prescribed.

The move to legalise medicinal cannabis followed several high-profile cases, including those of young epilepsy sufferers Alfie Dingley and Billy Caldwell, whose conditions appeared to be helped by cannabis oil. Calls for legalisation also came from people with multiple sclerosis (MS) and chronic pain – and their campaigning did not stop with a change in the law.

Just 12 NHS prescriptions for medicinal cannabis had been issued by the end of September 2019, The Telegraph reported. In early November, doctors and people living with multiple sclerosis (MS) revealed “systemic issues” with the prescribing of cannabis-based products for the condition.

Rhona, 52, who was diagnosed with MS in 1994, was one of them. “Whenever I’ve asked any of my medical team about getting cannabis on prescription, they don’t how they can prescribe it,” she told the MS Society. “When I know there is something that could make me more productive, it feels very unfair.”

There is limited evidence of the effects of medicinal cannabis, and very little long-term research, which means experts are reluctant to prescribe it en masse until more clinical trials have taken place. Licensing is also an issue – very few products are actually licensed for medicinal use in the UK and there is no dedicated medicinal cannabis regulatory system, unlike other countries. 

But hope is on the horizon for campaigners. At the start of November, it was announced that up to 20,000 patients in the UK are to be given medical cannabis over a two-year period to build up a larger body of evidence. Dependent on its findings, this major trial could lead to medicinal cannabis becoming more widely available and affordable to those who need it.

In the meantime, the new guidelines from the National Institute For Health And Care Excellence (NICE) will inform NHS strategies and provide some clarity.

Who can prescribe medicinal cannabis?

The medicines can only be prescribed by a specialist doctor – not a GP – on a case-by-case basis. The only legal alternative to medicinal cannabis on the NHS is a private prescription, which can cost anywhere up to £4,000 a month. Others have taken illegal routes, including bringing medicinal cannabis into the UK from abroad and growing their own cannabis plants, asking the police for amnesty.

Since legalisation, even specialist doctors have struggled to gain access. Dr Eli Silber, a consultant neurologist at Kings College Hospital NHS Foundation Trust, said that she hadn’t been able to help a single one of her MS patients obtain a prescription. “The current limitations on prescribing and funding actively discourage clinicians from prescribing cannabis, leaving no flexibility for us to act in the best interest of our patients,” said Dr Silber.

What can medicinal cannabis be prescribed for?

Two cannabis-based medicinal products have been recommended for use for the first time under the NICE guidance – although NHS England does advise that medicinal cannabis should be used only after other treatment options have been exhausted.

Epidyolex, which contains highly purified cannabidiol (CBD), has been approved to treat two rare types of epilepsy: Lennox-Gastaut and Dravet syndromes.

Sativex, a THC:CBD spray, has been recommended to treat severe muscle spasms in people with multiple sclerosis (MS). The mouth spray contains two chemical extracts derived from the cannabis plant: delta-9 tetrahydrocannabinol (THC) and cannabidiol (CBD).

People looking to obtain Sativex had previously encountered issues. Noeline, 64, from Cumbria, has lived with MS since 2013 and said she asked her doctor about obtaining the spray after medicinal cannabis was legalised: “He said he couldn’t prescribe it for a good few years yet because of all the red tape.”

As part of the NICE guidance, doctors treatment adults with chemotherapy-induced nausea and vomiting, can also now consider prescribing nabilone, a synthetic cannabinoid, as an add-on treatment.

What can’t medicinal cannabis be prescribed for?

Under the new guidelines, people with chronic pain will no longer be prescribed cannabis-based products such as nabilone, dronabinol, THC (delta-9-tetrahydrocannabinol), and a combination of cannabidiol (CBD) with THC.

They may be prescribed cannabidiol (a pure, plant-derived cannabinoid) on its own but only in the context of a clinical trial. “Adults who started cannabis-based medicinal products to manage chronic pain in the NHS before this guidance was published should be able to continue treatment until they and their NHS clinician think it appropriate to stop,” the NICE guidance advises.

A spokesperson told HuffPost UK this is because these products offer patients are very small compared with their high costs, so they cannot be considered a cost-effective use of NHS resources.

The news will come as a disappointment for those with chronic pain, people like Carly Barton, who says patients are being let down. “Cannabis has already been through the biggest ‘trial’ known to man, it is out there and it is working, we should be looking at how to collect that data,” she wrote in an opinion piece for HuffPost UK. “It is an insult to patients to suggest that their experiences with their own bodies are not valid when making decisions about their treatment.”

What about CBD oil on the high street?

Do the new guidelines go far enough?

Ley Sander, medical director at the Epilepsy Society and professor of neurology at University College London (UCL), said the NICE guidelines “will bring hope” to many families affected by Lennox-Gastaut and Dravet syndromes. “The need for new treatment options is unquestionable and it is reassuring that the new medication has been through clinical trials and regulatory processes.”

The timeframe of research and testing means doctors “still cannot be certain of the long-term efficacy of this CBD product or what its effect might be on the developing brain”, said Professor Sander, who warned that medicinal cannabis is “not a magic bullet” and, like other anti-seizure medications, is likely to work for some but not for others.

Mark Devlin, chief executive of Young Epilepsy, said it was unclear if the NICE guidelines would have an immediate impact on prescriptions for children and young people with epilepsy, beyond those who meet the strict criteria for CBD.

“Many families have received mixed messages about whether their child might have access to cannabis-based medicines. It’s vital that families get the best information to help them make decisions with their specialists about the appropriate treatment options available to their children,” said Devlin.

Global cannabis expert Marc Davis, who advises some of the world’s largest suppliers of medicinal cannabis, told HuffPost UK that while the approval of Epidyolex and Sativex spray “is a crucial step in the right direction”, ultimately the guidelines do not go far enough and leave countless patients “at a loss”.

He called the guidelines a “huge missed opportunity” for the UK, where a medicinal cannabis regulatory system is “urgently” needed. “Further clinical research, physician education and continued patient advocacy should help to challenge misinformed perceptions, prejudices and medical apprehension that is fuelling an anti-cannabis hysteria,” he added.