Responding to the publication of the NICE guidelines on cannabis-based medicinal products and the approval of CBD as a treatment, Mark Devlin, Chief Executive of Young Epilepsy, said:
Living with epilepsy can have a significant impact on the lives of children, young people and their families. We are pleased to see that NICE has approved CBD (Epidyolex) as an add-on treatment for people with Dravet syndrome and Lennox-Gastaut syndrome who are living with uncontrolled seizures.
As evidence develops on the efficacy and safety of cannabis-based medicines, it’s crucial that families have the earliest opportunity to consider the benefits of new treatments for uncontrolled seizures with their specialist clinicians – especially when other treatments have failed. The best interests of the child should always be the guiding principle in making treatment decisions.
We also welcome NICE’s recommendation for further research into cannabis-based medicines for uncontrolled epilepsy and agree this is urgently needed to ensure these treatments are effective and safe for children and young people’s health in the longer run. We would call for this progress to be accelerated and kept under active review, with guidelines revised regularly.
It’s unclear whether the NICE guidelines will have an immediate impact on prescribing cannabis-based medicines for children and young people with epilepsy, beyond those who meet the strict criteria for CBD. Many families have received mixed messages about whether their child might have access to cannabis-based medicines. It’s vital that families get the best information to help them make decisions with their specialists about the appropriate treatment options available to their children.”