Hannah Deacon

ECH, PATIENT ADVOCACY SPECIALIST

Mother to Alfie and Annie and partner to Drew. She is a Patient Advocacy specialist for ECH and campaigner for medical cannabis on prescription, She works with Prof Mike Barnes on the issue of medical cannabis within the U.K. and also worked closely with End Our Pain, a campaign group for medical cannabis on prescription who helped her get the license for Alfie.
Her son Alfie started having seizures at eight months old which progressively got worse with age. He was diagnosed with PCDH19 epilepsy at the age of 5. The only treatment which stopped Alfies seizure clusters is intravenous steroids, he was receiving up to 25 doses a month by the age of 5. This was not sustainable and would have ended in his life eventually. Hannah, along with her family, took Alfie to Holland in 2017 to be treated by a Paediatric Neurologist with medical cannabis as a last-ditch attempt to save his life. The medicine worked, but they came home in February 2018, as money had run out but without knowing how to get him his medicine in the UK.
After a long fought four-month battle working alongside End Our Pain, Alfieā€™s doctor Prof Mike Barnes, was issued the first medical cannabis license in the UK on 19th June 2018 to enable him to prescribe the medication that Alfie had been given in Holland. On this day the Home Secretary also announced the review into medical cannabis. On 1st November 2018 the law was changed so full extract cannabis oil can be prescribed on the NHS. Alfie now has the first legal NHS prescription in the UK.
Alfie remains extremely well thanks to securing his prescription and enjoys a full and happy life.