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, at present the NHS does not routinely fund these treatments.
The most important point for any parent or young person living with epilepsy to note is that consultants have been advised to only prescribe cannabis-based medicines as a last resort, where a child meets all three of the following criteria:
The child has uncontrolled epilepsy despite treatment with licensed anti-epileptic drugs;
The child has not responded to the ketogenic diet (or the diet is not appropriate for them);
The child is not a candidate for epilepsy surgery.
Parents and young people with epilepsy should also be aware of the following facts when considering the potential benefits of cannabis-based medicines:
If your child has complex epilepsy with uncontrolled seizures, you should first discuss all available treatment options and any potential side effects with your consultant;
Cannabis-based medicines are not routinely funded by the NHS, so decisions will be 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”; the relative safety of THC use in children is unknown but there is concern it may cause permanent damage to the brain;
A pharmaceutically prepared CBD add-on treatment (used alongside existing antiepileptic drugs) for the treatment of seizures in children with Dravet or Lennox-Gastaut syndromes has been granted a marketing authorisation by the European Medicines Agency (EMA) and is currently undergoing approval by NICE;
If NICE approves this CBD treatment, the NHS will be legally obliged to fund its use - but only as an add-on treatment for Dravet or Lennox-Gastaut syndromes; a decision is expected from NICE by December 2019, which means children may be able to access this specific medicine (through NHS funding) by the end of 2019.
For more details on how consultants will now consider the prescription of cannabis-based medicines for childhood epilepsy, read the BPNA guidelines. You can also find more information on the NHS website.
If you have any questions or concerns about cannabis-based medicines please speak with your consultant.
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