What has SMC said?
The Scottish Medicines Consortium (SMC) has accepted fenfluramine to treat epileptic seizures that are due to Lennox-Gastaut syndrome (a rare severe form of epilepsy). It is used as an add-on treatment to other anti-epileptic medicines to treat patients who are 2 years old or older.
SMC has accepted fenfluramine for restricted use. The restriction means that fenfluramine is accepted for use to treat the patients described above when their seizures have not been controlled after trying two or more anti-epileptic medicines.
This document summarises the SMC decision and what it means for patients.
You can find more detailed information about the SMC assessment of fenfluramine by looking at the SMC Detailed Advice Document (SMC2723).
What does SMC’s decision mean for patients?
Fenfluramine for use as described above is available for prescribing on the NHS in Scotland. Your healthcare professional can discuss with you if it is the right treatment for you or your child.
You can find more information about making decisions about your or your child’s treatment in this booklet called: Medicines in Scotland: What’s the right treatment for me?
More about SMC’s decision
SMC’s decision takes into account a confidential discount offered by the pharmaceutical company.
How does SMC make its decision?
SMC carefully considers every new medicine to make sure it benefits patients and is likely to be a good use of NHS resources.
To do this SMC studies the following:
- Evidence from the company about how well the medicine works compared with current treatments available in Scotland, in relation to how much they will cost to buy and use to treat
- Information from patient groups about the potential impact of the medicine on patients and carers.
- Advice from healthcare professionals about any benefits of the new medicine compared to current treatment, along with how the new medicine is likely to be
When SMC assesses a medicine it takes account of the needs of all patients in NHSScotland, not only those who may be treated with the medicine.
You can find out more about how SMC decides here: https://www.scottishmedicines.org.uk/how- we-decide/
More information and support
The organisations below can provide more information and support for people with Lennox Gastaut syndrome and their families. SMC is not responsible for the content of any information provided by external organisations.
Tuberous Sclerosis Association
https://tuberous-sclerosis.org
0808 801 0700
UK rare epilepsies together (UKRET)
You can find out more about fenfluramine (Fintepla®) in the Patient Information Leaflet (PIL) by searching for the medicine name on the Medicines and Healthcare products Regulatory Agency (MHRA) website.