Scotland gets new drug for Lennox Gastaut syndrome – now England waits

Children over the age of two and adults with Lennox-Gastaut syndrome (LGS) in Scotland can now be prescribed the anti-epilepsy medication, fenfluramine.

The news follows a decision by the Scottish Medicines Consortium (SMC)to allow restricted use of fenfluramine for patients with LGS by NHS Scotland, where seizures have not been controlled after trying two or more anti-epileptic medications. 

Lennox Gastaut syndrome is a rare but severe form of epilepsy that usually begins in infancy but continues into adult life. It is characterised by multiple seizure types, cognitive impairment and developmental delays.
 

Fenfluramine can now be prescribed by NHS Scotland if a person’s healthcare professional thinks it is the right treatment option for them or their child.
 

The medication is currently under review for the treatment of Lennox Gastaut syndrome in England and a decision is awaited from NICE, the National Institute for Health and Care Excellence.
 

Allison Watson, founder of the UK Rare Epilepsies Together said: “It was a privilege to represent the patient voice of the LGS community through the UKRET network, comprising many member organisations each separately representing a subset of affected individuals, to help achieve a positive decision from the SMC.”
 

Nicola Swanborough, Head of External Affairs at the Epilepsy Society welcomed the news: “It is very encouraging to see a new treatment for this rare form of epilepsy which can have a devastating effect on families. We now hope that NICE will also allow access to fenfluramine for patients with LGS in England.”