Young people with severe, drug-resistant epilepsy are at risk of losing access to the cannabis-based medicine that helps control their seizures.
But this crisis is about more than one medicine.
In 2018, the law changed to improve access to cannabis-based medicines. Eight years later, access remains extremely limited and families are still fighting for treatments their children rely on.
Together, MedCan Family Foundation, Young Epilepsy, Epilepsy Action, SUDEP Action and the UK Infantile Spasms Trust have written to the Prime Minister calling for urgent action to protect existing supplies, alongside wider change to improve research, develop treatments and create a workable route to NHS access.
Families cannot afford another eight years of waiting.
Read our letter and help us spread the word.
Hum Fleming, Young Epilepsy ambassador, says:
"Living with epilepsy means understanding that seizures are not simply an inconvenience. They can take away your independence, your confidence and, in the most severe cases, your life.
For children with drug-resistant epilepsy, the stakes are extraordinarily high. We should be doing everything possible to find better treatments, and we already know that for some of them, that means cannabis-based medicines.
The law changed in the UK because government health experts recognised that, yet patients still struggle to access it – that seriously needs to be addressed and to change."
