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For parents of children with epilepsy

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Here's what you all did for Purple Day...

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Medication Training

Emergency Medication Training for Teachers

A half-day course for teachers, to increase their understanding of epilepsy as a long-term condition, and demonstrate how to administer emergency medication.

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Mark Devlin website image

Young Epilepsy announces new Chief Executive

Young Epilepsy is pleased to announce the appointment of Mark Devlin as its new Chief Executive.

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Parent guide article

Books about epilepsy - recommended reads

Arguably, there aren't enough books out there that cover epilepsy, regardless of whether they're fiction or non-fiction. Here, we recommend a small handful that have been published in recent years...

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Alex Gwilt Cox

Young Epilepsy’s Children in Need funding enters second year

Thanks to donations made to BBC Children in Need during the annual telethon campaign taking place every November, Young Epilepsy has continued to support children and young people with epilepsy in London.

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#ThisIsEpilepsy Christmas Appeal 2018

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Charity Christmas appeal places spotlight on absence seizures

10,000 children with absence seizures need faster diagnosis, treatment and support

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Cannabis-based medicines: what this means for you

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.

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.

Comedy On for Young Epilepsy

Giggles and laughs for epilepsy awareness

While epilepsy is no laughing matter, one man is turning 'comedy on' for Young Epilepsy.

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Come and #CarveForYE this Hallowe'en

For this Hallowe'en, Young Epilepsy is urging you to be spookily creative for a good cause.

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Cyber EssentialsFundraising RegulatorYoung Epilepsy is the operating name of The National Centre for Young People with Epilepsy Charitable Trust.
Registered Charity number 311877 (England and Wales)

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