We were recently involved in the Scottish Medicines Consortium (SMC)’s assessment of cannabidiol for the treatment of patients aged 2 and over with two rare forms of epilepsy – Dravet Syndrome and Lennox-Gastaut Syndrome.

After careful consideration the SMC has announced today they will accept cannabidiol for the treatment of Dravet Syndrome and Lennox-Gastaut Syndrome, which means if your healthcare professional thinks it’s the right medicine for you or your child, you can now access it on the NHS in Scotland.

Thank you to all our service-users who submitted evidence and helped us make a meaningful contribution to this decision. It was so crucial to consider the impact of this medicine, for the individuals, families and carers affected.

For further information on the SMC’s decision and detailed advice, click here.

Our own Education and Outreach Worker, Colleen Wilson, offers her personal reflections on the matter below:

“Along with other patient and carer groups, Epilepsy Connections was invited to present the opinions and experiences of those people who would be affected by a potential new therapy (CBD), should SMC recommend it. In our written submission, we were able to reflect this information from our service users.

The next part of the process was to attend the Patient and Clinician Engagement (PACE) meeting. The clinical and economic evidence was already in place, and the PACE part was to give personal accounts and a true insight into what it’s like to live with epilepsy, and to care for a person with epilepsy. 

And even in these days of Zoom and virtual meetings, which can be a bit impersonal, the discussions and Q&A had a powerful impact on the panel and chair.

I was particularly moved by the contribution from Dravet Syndrome UK; discovering that current treatments are not working for almost every person with Dravet Syndrome made an overwhelming case for granting this new treatment. I felt that we were listened to and heard.”