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 that worked for Alfie was hospital inpatient 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 access 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, they together fought for four long months. On June 19th, 2018, Alfie’s providers were issued the first ever medical cannabis prescription in the UK. Alfie began life-saving treatment with medical cannabis.
“I urge doctors to be open minded about medical cannabis: educate yourselves and listen to your patients. You have the power to change the lives of people who are very unwell.”
Hannah Deacon
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 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 far more devastating effects on 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 patients’ lives.
What is next for Hannah Deacon and her stalwart advocacy for 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, which provides desperately needed cannabis science education for physicians, patients, and patient families.
Editor’s Update May 7, 2025: From Maple Group Consultants: Hannah Deacon died on Tuesday, May 6, 2025, surrounded by those who loved her, after a short and brutal illness. She was just 45 years old … .“Her fight to find treatment for her son Alfie’s rare and severe epilepsy led to a breakthrough that changed his life and ultimately changed the law. She went on to transform the lives of thousands of patients and families, never stopping in her work to push for better access, better care, and a better understanding of medical cannabis.”
