Better futures for young lives with epilepsy and associated conditions
A- A A+
Donate Now Main Number: 01342 832243 (Mon-Fri, 8:30am-5pm)
Helpline: 01342 831342 (Mon-Fri, 9am-3pm)
Menu

News

#ThisIsEpilepsy Christmas Appeal 2018

YE ThisIsEpilepsy Website Article Banner

Charity Christmas appeal places spotlight on absence seizures

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

Read more

 cbd2

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, at present the NHS does not routinely fund these treatments.

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

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:

  1. The child has uncontrolled epilepsy despite treatment with licensed anti-epileptic drugs;

  2. The child has not responded to the ketogenic diet (or the diet is not appropriate for them);

  3. 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.

Find out more about cannabis-based medicines

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.

Read more

 CarveForYE

Come and #CarveForYE this Hallowe'en

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

Read more

research team online

Researchers wave Young Epilepsy flag at Woburn Triathlon

Members of Young Epilepsy's research team swam, ran and cycled for the charity at one of the UK's largest growing triathlon events.

Read more

 join start fundraising group

Join (or start) a Young Epilepsy fundraising group

Here at Young Epilepsy, we take pride in our support and fundraising groups in various parts of the country. They shine a light to those who need help the most in their local area.

Read more

RCPCH

Parent/carer recruitment for RCPCH Epilepsy Programme Board

Help to shape the direction of the RCPCH Epilepsy Programme Board as a parent/carer representative.

Read more

Tias Treasures

Raising epilepsy awareness with Tia's Treasures

We have a new Karren Brady about as budding entrepreneur 13-year-old Tia has a charity business raising lots for epilepsy awareness.

Read more

Wingwalk

Dare yourself through a wingwalk, just like Ben

Going anywhere near a plane would leave many in a cold sweat. How about considering dangling on top of one?

Read more

GSK visit group photo

Businesses queue up to volunteer

Young Epilepsy has seen an influx of businesses wanting to take advantage of their internal staff engagement by volunteering for charities.

Read more

Share with friends

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

We use cookies to improve our website and your experience when using it. Cookies used for the essential operation of the site have already been set. To find out more about the cookies we use and how to delete them, see our Privacy Policy.

I accept cookies from this site
EU Cookie Directive plugin by www.channeldigital.co.uk