Hannah Deacon is mother to Alfie and Annie and partner to Drew. She works closely with Professor Mike Barnes to raise awareness of medical cannabis and the issues patients face within the U.K.; she is the Executive Director of the Medical Cannabis Clinicians Society. She is also Head of Patient Access for Lyphe Group.
Alfie started having seizures at eight months old, which progressively got worse with age. He is diagnosed with PCDH19. The only treatment which worked for Alfie was IV steroids. He was having up to 25 doses a month by the time he was five as his condition was getting progressively worse. IV Steriods are extremely dangerous to give on a regular, long term basis. After researching alternative treatments for epilepsy, 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 medication in the U.K.
After a long-fought four-month battle working alongside End Our Pain and the Government, Alfie’s doctor Professor Mike Barnes, was issued with the first-ever personal schedule one license to prescribe medical cannabis in the U.K. on 19th June 2018. On this day the Home Secretary also announced the review into medical cannabis which helped lead to the law change. On 1st November 2018 the law was changed so full extract cannabis oil can be prescribed on the NHS by specialist clinicians. Alfie now has the first legal NHS prescription in the U.K. The campaign which Hannah and End Our Pain ran, played a huge role in ensuring the law was changed, and we are very proud of this.
Alfie remains exceptionally well, thanks to securing his prescription and enjoys a full and happy life. Medical Cannabis is not a cure, but it is an amazing treatment for Alfie. My work is now to advocate for those that need medical cannabis on prescription. I support 18 families who are all desperate for help. There are many thousands more, I know what it is like to suffer with a very poorly child, and I will do all I can to be the voice for these families and try to ensure they can access medical cannabis on prescription through the NHS.