Cannabis-based medicines: what it means for you

Key facts about cannabis-based medicines in the treatment of epilepsy

Parents and young people with epilepsy should be aware of the following facts when considering the potential benefits of cannabis-based medicines:

  • If a child or young person has complex epilepsy with uncontrolled seizures, you should first discuss all available treatment options and any potential side effects with your consultant;
  • Children and young people's best interests should be the guiding principle in any treatment decisions;

  • With the exception of Epidyolex (a CBD add-on treatment for Dravet syndrome and Lennox-Gastaut syndrome), the NHS does not routinely prescribe and fund cannabis-based medicines. Decisions are made locally about whether an individual child should be prescribed such a treatment;

  • Cannabis-based medicines are not the same as street cannabis (which is illegal) or other cannabis products you can buy online or on the high street. These have not been tested to make sure they are safe and effective in the same way as licensed medicines;

  • You should not attempt to use any cannabis products you can buy online or on the high street as an anti-epileptic treatment;

  • Cannabis-based medicines for epilepsy have two primary active ingredients: CBD (cannabidiol) which is non-psychoactive and THC (tetrahydrocannabinol) which is psychoactive and results in a so-called “high”;

  • Whilst there is sufficient evidence to support the use of CBD medicines in the treatment of some complex childhood epilepsies, there is little evidence on the safety and efficacy of medicines which contain THC for the treatment of seizures in children;

  • Epidyolex is a pharmaceutically prepared CBD add-on treatment (used alongside clobazam) for the treatment of seizures in children with Dravet syndrome or Lennox-Gastaut syndrome; 

  • NICE (the National Institute for Health and Care Excellence) approved this CBD treatment for routine NHS use on 11 November 2019, but only as an add-on treatment for seizures associated with Dravet syndrome or Lennox-Gastaut syndrome

  • NICE has also called for further research into the use of CBD and THC for severe treatment-resistant epilepsy;

  • A UK-wide Refractory Epilepsy Specialist Clinical Advisory Service (RESCAS) has been set up to provide advice and support to consultants for the treatment of uncontrolled seizures. Any regional paediatric neurology centre can refer a child or young person's case to RESCAS for discussion. 

You can read more about cannabis-based medicines on the NHS website.

If you have any questions or concerns about cannabis-based medicines please speak with your consultant.