Co-Founder & Vice Chair
My son Alfie has a rare form of epilepsy called PCDH19. Alfie suffered up to 500 life-threatening seizures a month and was admitted to hospital 48 times in 2016 as a result of his severe epilepsy which is unresponsive to anti-epilepsy drugs. This is when I found medical cannabis could be a treatment for his severe epilepsy. I knew that I could not get this treatment from the UK legally, so we took our son to Holland in September 2017 for legal treatment with a paediatric Neurologist in the Hague.
Following successful treatment with full extract cannabis oil, we returned to the UK in February 2018 and fought a high-profile campaign to secure the first permanent license from the Home Office to access medical cannabis on the NHS. Alfie now has an NHS prescription since the law changed on 1st November. Since having medical cannabis treatment, Alfie had a period of eleven months completely seizure free. He still has seizures sometimes but they are far less and far easier to control. He has a hugely improved quality of life because he has access to medical cannabis on prescription.
Although around 500,000 people in the UK have epilepsy, only Alfie and one other person has been prescribed the treatment on the NHS. Families were delighted when the law changed in 2018, they thought their battle was over. Now they are in despair. The families I speak to every day have exhausted all their options, and are suffering terribly but they still can’t access the medical cannabis that could help them like it has helped Alfie.
I continue to fight the battle to overcome barriers to medical cannabis in the UK, support better education and ensure patients right across the country get the access they need and the help they deserve.