10,000 children with absence seizures need faster diagnosis, treatment and support
Since 1 November 2018, specialist doctors (consultants) have been able to prescribe cannabis-based medicines for children with complex childhood epilepsy.
There is some evidence to show that cannabis-based medicines can reduce seizures in complex childhood epilepsy. However, with the exception of pharmaceutically prepared CBD (see below), the NHS does not routinely prescribe and fund these treatments.
Parents and young people with epilepsy should be aware of the following facts when considering the potential benefits of cannabis-based medicines:
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 raw 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.
While epilepsy is no laughing matter, one man is turning 'comedy on' for Young Epilepsy.
For this Hallowe'en, Young Epilepsy is urging you to be spookily creative for a good cause.
Members of Young Epilepsy's research team swam, ran and cycled for the charity at one of the UK's largest growing triathlon events.
We have a new Karren Brady about as budding entrepreneur 13-year-old Tia has a charity business raising lots for epilepsy awareness.
Going anywhere near a plane would leave many in a cold sweat. How about considering dangling on top of one?
Young Epilepsy has seen an influx of businesses wanting to take advantage of their internal staff engagement by volunteering for charities.
The gorgeous Chiddingstone Castle in Kent set the scene for a magical, warm day - perfect for a walk fundraiser to create greater epilepsy awareness.
Amy Muggeridge, Research Manager at Young Epilepsy, provides an update on the SEEN (Sussex Early Epilepsy and Neurobiology) study, which was officially published back in March 2018.