UK-based Hannah Deacon is mother to Alfie and Annie and partner to Drew. Their son Alfie started having seizures at eight months old which progressively worsened with his age. At age five, he was diagnosed with PCDH19, a rare epilepsy syndrome with early-onset seizures, cognitive and sensory delays, and behavioral problems. The only treatment which worked for Alfie was hospital in-patient IV steroids, which are extremely dangerous to give on a regular, long term basis. The impact of his epilepsy was not his alone, it created financial hardship for Alfie’s entire family and disrupted any semblance of a balanced happy family life.
While Alfie’s condition progressively worsened, Hannah began to research alternative treatments for his epilepsy. Her research led her to medical cannabis and a family move to Holland in 2017 for access to medical cannabis as a last-ditch attempt to save Alfie’s life.
In Holland, Alfie was treated by a pediatric neurologist and the medical cannabis treatment plan worked like a dream. But by February 2018, the family’s money had run out and without knowing how to have access to Alfie’s life-saving medical cannabis in the UK the family considered moving as medical refugees to US states with a medical cannabis program or Canada. Finances forced the family to return to the UK. After meeting and working with cannabis physician Mike Barnes and the family’s physician, together fought for four long months. On June 19th, 2018 Alfie’s providers were issues the first ever medical cannabis prescription in the UK. Alfie began life-saving treatment with medical cannabis.
Alfie was the first to receive a legal National Health Services (NHS) prescription for medical cannabis. Shortly after in November 2019, UK law was changed so that full extract cannabis oil can be prescribed on the by specialist clinicians. Alfie now enjoys a full and happy life. But the work is not nearly over for Hannah, parents like Hannah and their physician advocates.
There have been only three medical cannabis prescriptions since it became legal on the NHS. Parents continue to hear the horrific screams of their epileptic children due to a dire lack of accessibility to treatments. Medical cannabis keeps children out of hospitals and off of drugs like steroids which have farm more devastating effects upon a developing child. Medical cannabis is not the panacea to cure epilepsy but it does have a significant impact on lessening the number of seizures and improving patient lives.
What is next for Hannah Deacon and her stalwart advocacy focused on providing safe, lifesaving medicine for families in the UK and beyond? For starters, she’s founded Maple Tree Consultancy, the UK’s premier medical cannabis experts, providing desperately needed cannabis science education for physicians, patients and patient families.