RCPCH responds to NICE guidance on cannabidiol use in two forms of childhood epilepsy

Dr Mike Linney, Registrar and Chair of the Ethics Committee for RCPCH, welcomes recent guidance from NICE, but notes the urgent need for high quality, independent research on this medicine to provide the best possible care for children with complex epilepsy.

NICE recently published technology appraisal guidance on the use of cannabidiol in conjunction with clobazam for the treatment of two forms of childhood epilepsy, Lennox Gastaut Syndrome and Dravet Syndrome, for patients of two years of age and older. NHSE subsequently announced that they were fast-tracking access to Epidyolex for these two conditions.

Commenting on the developments, Dr Mike Linney, Registrar and Chair of the Ethics Committee for the Royal College of Paediatrics and Child Health (RCPCH) said:

We welcome the fact that NICE has recommended the use of cannabidiol (Epidyolex) to treat these two syndromes and that these can now be prescribed on the NHS. We also recognise that some families are hoping to see the licensing of a wider range of cannabis-based medicines, including those that contain Tetrahydrocannabinol (THC), the main psychoactive constituent of cannabis.

Unfortunately, there isn’t enough research into these alternative products to ensure that they are both safe and effective and so they remain unlicensed and are only available on prescription in the UK under very specific circumstances.

We need high quality, independent research into these products as a matter of urgency in order to provide the best possible care for children with complex epilepsy.

NHS England and NHS Improvement undertook a review of barriers to accessing cannabis-based products for medicinal use on NHS prescription. The report contains several recommendations for clinicians, researchers and policy makers.

You can read our briefing on medicinal cannabis for children and young people, updated this month.