Hundreds of UK Families Giving Children Illegal Cannabis Due to Lack of NHS Access

The research, commissioned by charity Medan Family Foundation, reveals almost 400 families are sourcing illegal cannabis products from drug dealers and overseas retailers, to treat their child’s epilepsy.  

This includes children at some of those under the care of major paediatric hospitals, such as Great Ormond Street, Evelina, and Birmingham Children’s Hospital.

Elements of the report, Open Secret: use of illegal cannabis by families managing childhood epilepsy, featured in a BBC File on 4 radio documentary on 14 January.

Many parents say their children are seizure free or have seen a significant improvement in quality of life as a result of using these products. 

However, those behind the report warn that they are also at risk of contaminated products, dangerous advice around dosing and drug interactions, and the sudden withdrawal of supply.

The study identified 382 cases of products being accessed via online forums and chat groups, which also offered varying advice on dosing and weaning of other anti-epileptic drugs.

Authors say they are aware of more social media forums where products can be obtained, meaning the number of children across the UK being given illegal treatments, without clinical advice, is likely to be far higher. 

“We spoke with parents who are adamant that going down this path has saved their child’s life,” says report author and trustee of Medcan Family Foundation, Alice Salisbury. 

“It is impossible to deny that there are children who have gone from having dozens of life threatening seizures daily to seizure-freedom using these products. However, there is huge  variability in the quality of both products and advice that parents are being given

“Some families have undoubtedly managed to obtain high-quality liquids supplied by people who appear able to offer responsible advice on how to use them, but we also witnessed many parents being given random products with no certainty on the content, and advice on dosing and drug interactions that is simply dangerous.” 

One parent told Cannabis Health she was sent oil in the post “wrapped in fluffy socks with scented candles” to disguise the smell, accompanied by “sketchy instructions”.  

“Parents who are usually law-abiding citizens, should not be forced to take this risk out of desperation, when it can be funded and prescribed via the NHS,” she added.

The researchers also spoke to those supplying illegal cannabis oil to parents, who explained how they replicate legal cannabis-based medicines. 

“In the UK there is no supply issue with cannabis. You can get it anywhere,” one said.

“You can get THC, CBN, and specific terpenes. I can get as specific as you want. I can replicate Bedrocan. We can replicate pretty much any product that is put our way.”

Medical cannabis was legalised in the UK in November 2018, but fewer than five children have been able to obtain a prescription for unlicensed cannabis-based medicines on the NHS. 

In other developed countries, including Canada and the Netherlands, ‘cannabinoid  medications’ – medicines derived from cannabis – are routinely used as treatment for paediatric epilepsy. 

Campaigners say the previous government dismissed repeated calls to help children with treatment-resistant epilepsy, on the grounds that a randomised controlled trial was due to be launched.

Two randomised control trials (RCTs) investigating isolated forms of CBD and THC in drug-resistant epilepsy were announced in November 2024, having first been promised in 2019. The fact that these will require some patients to be given a placebo, campaigners say, is unlikely to prevent parents going to the illegal market.

Medcan Family Foundation chair and co-founder, Hannah Deacon, whose son Alfie was the first person in the UK to receive an NHS prescription for medical cannabis, commented: “Whilst cannabinoid epilepsy treatments continue to develop in other countries, the UK is being left behind. Diligent and loving parents feel forced to take desperate measures in the hope of  giving their child the same chance for survival that children in countries like Canada and The Netherlands have. 

“The sad reality is that if parents are given a choice between watching their child suffer or breaking the law, many – perhaps most – are going  to choose to break the law, especially when they see the cannabis treatment working. 

“The government and clinicians need to face up to this reality. They cannot continue to kick the issue into the long grass. To any families in this situation or who are thinking of going down this route,  we urge you to reach out to Medcan Family Foundation for confidential clinician-led advice, to  make sure you understand the real risks.” 

Matt Hughes, CEO of Medcan Family Foundation and father of Charlie, who has a rare form of  epilepsy called Lennox Gastaut Syndrome, added: “Many people will find it hard to imagine how a parent could do something like this. But imagine watching your child suffering endless daily seizures, being told there is nothing  more the NHS can do, being told you will lose them. Imagine knowing there is a medication that  might stop it, but there is no way for the doctor to prescribe it. 

“Parents who are taking this step  are taking it as a last resort, quite literally. Policy makers have the power to change the current  narrative and should ask themselves, given the choice between watching their own child die  and breaking the law, what would they do?”