Information for the public
Fenfluramine (Fintepla) is available on the NHS as a possible treatment for Dravet syndrome seizures in adults and children, as long as it’s used alongside 2 other antiseizure medicines.
You need to have already tried at least 2 other antiseizure medicines, which have not controlled your seizures.
How well fenfluramine works should be checked every 6 months. It should be stopped if the number of convulsive seizures has not fallen by at least 30% compared with the 6 months before starting treatment.
If you are not eligible for fenfluramine 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. Read more about 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
These organisations can give you advice and support:
- Dravet Syndrome UK, 01246 912 421
- Epilepsy Action, 0808 800 5050
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.
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