Medicinal cannabis was made legal in the UK in October last year for some medical conditions, yet there are still no forms of medicinal cannabis licenced on the NHS to treat epilepsy, despite the success stories that we are hearing about.

An article published by The Sunday Times this week highlights a situation where parents are being ‘forced’ to pay for private treatment – amounting to around £170 a week, as the NHS refuses to prescribe cannabis-based medication.

The article tells the story of toddler Alfie Brocklebank who lost his speech, took to banging his head against walls and became ‘inconsolable’ on conventional epilepsy medicines. Alfie’s consultant prescribed medication called Epidiolex, containing cannabidiol (CBD), but his local NHS Trust blocked the prescription.

His mother made the decision to pay for the medication privately. Three months on, she says: “Alfie has gone from having tens and tens of seizures every single day and being unable to walk, to no fits at all. He’s got his speech back and he’s going to playgroup with his sister. It’s incredible.”

The facts:

Cannabis contains two elements – cannabidiol (CBD) which has none of the mood-altering properties associated with cannabis, and tetrahydrocannabinol (THC) which gives people the ‘high’ feeling. There has been lots of research into the potential of CBD as an epilepsy treatment. Most of this research has involved children with rare and hard to treat forms of epilepsy.

A recent evidence review found that one in eight people taking CBD would have a 50% or greater reduction in seizures. Less than 1 in 150 would become seizure free.  One in three people reported side-effects such as drowsiness, diarrhoea, reduced appetite and fatigue.  

Epidiolex, a medication containing CBD, is currently going through the licensing process. In the meantime, specialists may prescribe it in rare circumstances, but even if a paediatric neurologist recommends the medication, the decision must be approved by the hospital, and the NHS will need to agree to pay for it.

Further reading:

Read The Sunday Times article from February 3rd, 2019

Read Epilepsy Action’s latest news story about medical cannabis

Read Epilepsy Action’s position statements on medical cannabis

Read the Home Office announcement on medical cannabis