Information for the public

Cannabidiol (Epidyolex) is available on the NHS as a possible add-on treatment for seizures caused by tuberous sclerosis complex in people aged 2 years and over, if:

  • they have tried 2 or more antiseizure medications (either used alone or in combination) and:
    • these didn’t control their seizures well enough, or
    • they have not tolerated these, and
  • the frequency of their seizures is checked every 6 months, and cannabidiol is stopped if the frequency has not fallen by at least 30% compared with the 6 months before starting treatment.

If you are not eligible for cannabidiol but are already having it, you should be able to continue until you and your doctor decide when best to stop.

Is this treatment right for me?

Your healthcare professionals should give you clear information, talk with you about your options and listen carefully to your views and concerns. Your family can be involved too, if you wish. See our webpage on making decisions about your care.

Questions to think about

  • How well does it work compared with other treatments?
  • What are the risks or side effects? How likely are they?
  • How will the treatment affect my day-to-day life?
  • What happens if the treatment does not work?
  • What happens if I do not want to have treatment? Are there other treatments available?

Information and support

The NHS webpage on tuberous sclerosis may be a good place to find out more.

These organisations can give you advice and support:

You can also get support from your local Healthwatch.

NICE is not responsible for the quality or accuracy of any information or advice provided by these organisations.

ISBN: 978-1-4731-5046-1

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