Families have marked the seventh anniversary of the legalisation of medical cannabis in the UK with further calls for urgent government action on NHS access.
Dozens of families attended Westminster on Tuesday (4 November) to meet with cross-party MPs and demand immediate action to address the ongoing crisis facing children with severe epilepsy.
It comes as a new awareness film, released by Medcan Family Foundation, gives voice to the parents and children whose stories were crucial in the campaign to legalise medical cannabis in 2018, but who have since been left without access to the treatments the law change promised.
When the former Home Secretary, Sajid Javid, announced the rescheduling of medical cannabis under the Misuse of Drugs Act on 1 November 2018 – allowing doctors on the GMC specialist register to prescribe cannabis-based products for medicinal use (CBPMs) – he stressed the importance of ‘acting swiftly’ to ensure patients had access to appropriate medical treatment.
But seven years on, fewer than five children have been able to access CBPMs through the NHS. Some families have been able to obtain private prescriptions, costing them up to £30,000 a year, and research published earlier this year found that over 400 are sourcing products illegally from online sellers and street dealers despite the significant risks.
What was once hailed as a historic victory has become a ‘national failure’, campaigners say.
“It’s unbearable,” said mum Carly, featured in the film with her daughter Esme, who suffers hundreds of seizures daily, causing her to lose the ability to talk, walk or feed herself.
“The law was changed because of children like ours, but seven years later, we’re still forced to pay privately or fundraise to keep our children alive.”
The last hope for many
According to Medcan Family Foundation, more than 35,000 children in the UK are living with drug-resistant epilepsy, a figure that hasn’t changed in over 40 years.
Some research suggests that once a child has tried two or three anti-epileptic drugs, the chances of any further medication working drop dramatically, and progress to develop effective new treatment options has been slow.
For many families, medical cannabis offers one of the only hopes of significantly reducing seizures when these conventional therapies have failed.
Patient groups who attended a recent meeting held by the British Paediatric Neurology Association (BPNA) report that long-awaited clinical trials into CBPMs and treatment-resistant epilepsy – first promised in 2019 – have been delayed again and are now not expected to start until 2027, with the first results published in 2029.
An observational trial, also recommended in 2019 and accepted by the government, which would have captured six years of real-world data from children already prescribed cannabis-based medicines, has never gone ahead.
Recommendations for urgent reform
An open letter signed by over 600 families, leading experts and MPs, demands urgent government action, including a public inquiry into the Department of Health and Social Care (DHSC)’s failure to implement the 2018 law, and a formal apology and reimbursement for families who have been harmed as a result.
Accusing the DHSC of “structural impunity”, the letter, led by the campaign group End Our Pain, sets out seven recommendations for the government to address the ongoing barriers to access. This includes establishing funding for NHS prescribing of CBPMs in chronic conditions, the removal of the “specialist” restriction to enable GP prescribing, and the creation of a national monitoring framework for all CBPMs.
The letter also calls for the introduction of electronic prescribing of CBPMs – which was recommended by the Advisory Council for the Misuse of Drugs and accepted by the government in 2023 – and the administration of privately prescribed CBPMs in NHS hospitals. Campaigners say that some continue to prevent nursing staff from administering privately prescribed cannabis-based medicines, with carers forced to administer medication in hospital settings without support.
Joanne Griffiths has spoken about her son Ben’s experience, when NHS staff were unable to administer his medication after a paper prescription was lost in the post, causing him to suffer hundreds of life-threatening seizures. Ben is only alive today, Griffiths says, thanks to the emergency administration of another child’s identical medicine.
“In 2023, after years of no hospital admissions for seizures, our son was left without his prescribed medical cannabis due to the lack of electronic prescribing,” says Griffiths.
“Less than 24 hours before he suffered life-threatening seizures, the NHS turned us away, fully aware we’d run out of the medicine that controlled them. The prescription was legal. The specialist had approved it, but the paper copy was lost in the post, and the pharmacy couldn’t dispense it. Our child’s oxygen dropped to 72%. His heart rate spiked to 218 BPM. He was having continuous seizures. We were powerless.”
End Our Pain is also calling for the release of internal documents, including 6,5000 emails from the DHSC, which are reportedly being withheld from FOI requests.
“In August 2018, the DHSC acknowledged our case and the need for reform. Seven years later, nothing has changed,” Griffiths adds.
“This treatment is judged with prejudice, treated differently from other Schedule 2 medications that GPs can prescribe. This isn’t bureaucracy. It’s medical negligence.”
ACMD review – an ‘opportunity to unlock meaningful access’
The new campaign push coincides with the latest ACMD review of the UK’s medical cannabis legislative framework.
Commissioned by the Home Office on 2 June 2025, the three-year project aims to re-evaluate whether the current system for prescribing, supplying, and researching medical cannabis is fit for purpose, and whether it has achieved the objectives envisioned following the rescheduling in 2018.
Patient groups say the ACMD’s forthcoming recommendations to the Home Office and DHSC present an opportunity that could finally unlock meaningful NHS routes for these children.
Matt Hughes, Co-Founder of Medcan Family Foundation, commented: “These families were the reason the law changed. To leave them stranded seven years later is indefensible. This review must deliver real NHS access—not more reports gathering dust.”
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Author: Sarah Sinclair
