Medical Cannabis for Epilepsy in the UK: Epidyolex and Beyond

Epilepsy and the Landmark Case That Changed UK Law

The legalisation of medical cannabis in the UK in November 2018 was driven in large part by high-profile cases involving children with severe, treatment-resistant epilepsy. The cases of Billy Caldwell and Alfie Dingley — both of whom experienced dramatic reductions in seizure frequency when treated with cannabis oil — captured national attention and ultimately prompted the government to reschedule cannabis-based medicinal products.

Today, epilepsy remains one of the most evidence-rich indications for medical cannabis in the UK, with a licensed medicine — Epidyolex — available for two specific rare epilepsy syndromes.

Epidyolex: The Licensed CBD Medicine for Epilepsy

Epidyolex (cannabidiol oral solution) is a pharmaceutical-grade, highly purified CBD product licensed in the UK for the treatment of seizures associated with two rare and severe epilepsy syndromes: Dravet syndrome and Lennox-Gastaut syndrome. It is also licensed for seizures associated with tuberous sclerosis complex (TSC).

Epidyolex is the only cannabis-based medicine with a full UK marketing authorisation for epilepsy. It can be prescribed on the NHS by specialist paediatric neurologists, and NICE has issued guidance supporting its use in these specific indications. For families of children with Dravet syndrome or Lennox-Gastaut syndrome, Epidyolex represents a significant therapeutic advance — clinical trials showed reductions in monthly seizure frequency of 40–50% compared to placebo.

Private Prescriptions for Other Epilepsy Types

Beyond the specific indications covered by Epidyolex, a range of other epilepsy types — including focal epilepsy and other treatment-resistant generalised epilepsies — may be eligible for private CBMP prescriptions. These prescriptions involve unlicensed cannabis-based products (such as cannabis oils with varying THC:CBD ratios) prescribed by specialist neurologists on a named-patient basis.

The evidence base for cannabis in broader epilepsy populations is less robust than for Dravet and Lennox-Gastaut syndromes, but real-world data and observational studies suggest that some patients with other treatment-resistant epilepsies may benefit.

What Families and Patients Should Know

Accessing medical cannabis for epilepsy in the UK requires working with a specialist neurologist. For children with Dravet syndrome or Lennox-Gastaut syndrome, the first step is to discuss Epidyolex with your child's neurologist, who can assess eligibility for an NHS prescription.

For adults or children with other forms of treatment-resistant epilepsy, a private specialist consultation may be the most appropriate route. CPGUK can help connect you with specialist clinics experienced in prescribing CBMPs for epilepsy, and can provide guidance on the process.

How CPGUK Can Help

CPGUK is a non-profit patient advocacy organisation that has supported many families navigating access to medical cannabis for epilepsy in the UK. Our free support service can help you understand your options, whether you are seeking an NHS prescription for Epidyolex or exploring private CBMP treatment for a broader epilepsy diagnosis.