Hannah Deacon

Hannah’s son Alfie has a rare form of epilepsy – PCDH19. He suffered up to 500 life-threatening seizures a month, and was admitted to hospital 48-times in 2016 as a result of his epilepsy being unresponsive to anti-epilepsy drugs. This is when Hannah found medical cannabis.

Knowing the treatment wouldn’t be available in the UK legally, Hannah and her family took their son to Holland in September 2017 for legal treatment, with a paediatric neurologist in the Hague. Following successful treatment with prescribed full extract cannabis oil, the family returned to the UK in February 2018 and fought a high-profile campaign to secure the first permanent schedule one license from the Home Office, to access medical cannabis on the NHS.

Alfie has had a funded NHS prescription since the law changed in November 2018. Since having this treatment, Alfie has had long periods of seizure freedom and has currently been seizure free for over 2 and a half years. His quality of life has hugely improved because of his access to medical cannabis. It has also meant Hannah has been able to go back to work and continues to campaign on access for patients and works with companies to support the development the growing UK sector.