Loved Ones’ Tribute Following Death of Medical Cannabis Campaigner, Hannah Deacon

In a statement on her website, Hannah’s loved ones said they were ‘heartbroken’ to share the news of her death after a ‘short and brutal illness’.

In March, Hannah announced she was stepping down from her role as chair of Medcan Family Foundation and would be taking time away from other work commitments to be with family, after being diagnosed with cancer. 

She died on Tuesday, 6 May, surrounded by those who loved her, aged just 45. 

Hannah was a beloved partner to Drew, an adoring mother to their children, Alfie, 13 and Annie, 10, as well as a treasured daughter, sister and friend to many. 

The family said: “We are heartbroken to share that Hannah Deacon died on Tuesday 6 May, surrounded by those who loved her, after a short and brutal illness. She was just 45.

“This devastating loss to Hannah’s beloved partner Drew, and children Alfie and Annie, is impossible to put into words.”

Hannah’s love for her children drove her to make the world a better place. Her campaign on behalf of Alfie, who has a rare and severe form of treatment-resistant epilepsy, played a crucial role in the legalisation of medical cannabis in 2018. 

Alfie was one of just six boys in the world to be diagnosed with the genetic condition, PCDH19, in 2015. The family were told there was no cure, and his doctors had exhausted all treatment options, but Hannah refused to give up on him. 

Through her research, she discovered other families using medical cannabis, and while the treatment wasn’t yet available in the UK, they moved to the Netherlands, where Alfie could access it legally.

Sharing their journey through the Alfie’s Hope Facebook page, Hannah and Alfie’s story captured the hearts of the nation, and her petition to the government to legalise medical cannabis in the UK was signed by over 700,000 people. 

Her tenacious campaigning took her to Downing Street, where she had tea with the then Prime Minister, Theresa May, who would eventually grant Alfie’s doctor the first full licence to prescribe cannabis on the NHS.

Medical cannabis was life-changing for Alfie, Hannah and their whole family.

Hannah strongly believed in fairness and in doing the right thing. Following the law change, she continued to campaign tirelessly on behalf of other patients and families for the treatment to be available on the NHS for anyone who needs it.

In 2020, she co-founded Medcan Family Foundation, alongside her friend and fellow campaigner, Matt Hughes, helping hundreds of families of children with epilepsy and other life-limiting conditions across the UK. 

She also forged a successful career as one of the most influential female leaders in the UK’s medical cannabis space, and dedicated the last few years of her life to advocating for patients and helping overcome barriers to accessing treatment. 

This included supporting better education for doctors as the Executive Director of the Medical Cannabis Clinicians Society, and advancing opportunities for growth in the sector, as a Director of Maple Tree Consultants. 

All of this was done alongside her colleague and close friend, Professor Mike Barnes, the neurologist who prescribed medical cannabis for Alfie, who became a beloved part of the family.

“Hannah was remarkable: determined, tenacious, and fiercely compassionate,” her loved ones said.

“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.”

The statement added: “More than anything, Hannah’s most proud and important role was being a mum. Alfie and Annie were her world. She adored them. Everything she fought for came from her enduring love for them and wish to make the world kinder and fairer. 

“Hannah was our brave, beautiful partner, daughter, sister, and friend. She made us laugh, made us think, and made us feel stronger just by being there. All of us are better for knowing her. We only wish we could have had more time.”

Further updates on how Hannah’s loved ones wish to honour her life, work and legacy, will be shared in due course. 

A note from the editor:

We have written many articles about Hannah over the last few years, but this is one we never imagined having to share, and has been one of the hardest to put into words. Hannah was a respected colleague and, more importantly, a close friend to Cannabis Health. Alongside Prof Mike Barnes, she helped establish the magazine in 2019 out of a desire to drive education, awareness and understanding of cannabis-based medicine, and her support has been unwavering throughout its evolution. 

We are sending love and strength to her family, and are eternally grateful for all of the light she brought into the world. We are certainly better for knowing her.