Hannah Deacon: Her Story and Legacy

2011 – 2016: One in six

Alfie was born on 24 September 2011 and suffered his first seizure at eight months old. Hannah, and her partner Drew, spent the next four months by his bedside, as he experienced hundreds of seizures a week, was rushed in and out of intensive care, and failed to respond to antiepileptic drugs. He was eventually prescribed high-dose steroids, which helped manage his seizures but often caused severe side effects of their own. 

After four years, in and out of hospital, in 2016, Alfie was diagnosed with the rare genetic condition, PCDH19 – one of just six boys in the world at the time. The family was told there was no cure and no known effective treatments. 

But Hannah refused to give up on him. She began looking for alternatives and reaching out to other families in online support groups. Her research led her to the historical use of cannabis as a medicine, including its earliest recorded use in seizures in the 1800s.

Convinced that this is their last hope, but unable to access it in the UK, in 2017, the family uprooted their life and moved to the Netherlands, where a doctor had agreed to prescribe medical cannabis oil for Alfie. 

2017: Alfie’s Hope

Hannah began sharing their journey on social media, setting up the Alfie’s Hope Facebook page where she posted updates on his progress and built a community of thousands of followers around the world. 

After six weeks in the Netherlands, Alfie started to make small improvements and his seizures gradually reduced. But back in the UK, his neurologist was told the trust would not support his application for a licence to prescribe the oil through the NHS. 

Forced to return home in January 2018, Hannah launched a petition to legalise medical cannabis in the UK, which was signed by over 700,000 people. Working alongside the campaign group, End Our Pain, her and Alfie’s story became the forefront of a national fight for legislative change.

2018: Making history 

Hannah was interviewed by major news publications, a regular guest on BBC Breakfast, BBC Radio, This Morning, and ITV News. She captured the hearts of the nation and secured an invitation to Downing Street to meet with the then Prime Minister, Theresa May. 

Over afternoon tea in Number 10, Hannah told her Alfie’s story. In a historical move, May agreed to allow his doctors to apply for a personal Schedule 1 licence to prescribe medical cannabis. This had never happened in the UK before. 

The family was introduced to Professor Mike Barnes, a renowned neurologist who had previously published research on the use of the now licensed cannabis-based drug, Sativex, in multiple sclerosis. Prof Barnes agreed to apply for the licence and spent the next three months working with the Home Office on the application. 

But Hannah, Drew and Alfie were not the only family fighting. On 11 June 2018, a mother from Ireland, who had also been campaigning on behalf of her son Billy, was stopped at Heathrow Airport, bringing cannabis oil from Canada back into the UK. The medication was confiscated, and Billy’s seizures returned, causing an emergency hospital admission. The story was covered widely by the media, putting urgent pressure on the government to restore his medication. As a result, the Home Office issued a temporary emergency Schedule 1 licence. 

On 18 June, Hannah was interviewed on the Today programme where she again pleaded with the Prime Minister to help Alfie. Later that day the call came to say the application for the first full licence to prescribe medical cannabis in the UK had been approved. 

At the end of July, Hannah flew to the Netherlands to collect Alfie’s medication and bring it home, legally, for the first time.

Around the same time, the Home Secretary Sajid Javid commissioned a review from the Chief Medical Officer, Dame Sally Davies, and the ACMD, which found evidence to support rescheduling medical cannabis under the Misuse of Drugs Act. 

History was made when Javid announced in parliament that as of 1 November 2018, it would be moved to Schedule 2, making it legal for any doctor on the GMC specialist register to prescribe cannabis-based products for medicinal use (CBPMs) for patients with an unmet clinical need. 

2019 and beyond: Awareness, education and access

Hannah’s campaign played a significant role in this landmark law change, resulting in a major victory for her family and thousands of other patients throughout the UK. 

But her story didn’t end there.

As it became clear that the change in legislation would not automatically mean medical cannabis was available to others on the NHS, Hannah never stopped campaigning on behalf of other families for fair and equal access for all children with treatment-resistant epilepsy. 

With Alfie’s condition improving, she was able to return to work and build her own career dedicated to improving awareness and understanding of medical cannabis.

In 2019, alongside Prof Barnes (who became a dear friend of the family), she co-founded the Medical Cannabis Clinicians Society to provide education, training, and support for doctors around the use of cannabis-based medicines. 

Hannah was deeply passionate about improving access to these treatments and firmly believed that healthcare professionals played a central role in this. Over the next six years, as Executive Director of the MCCS, she helped grow the society to almost 500 members and supported some of the early pioneers of CBPMs in the UK on their journey to prescribe. 

Hannah also co-founded the MedCan Family Foundation in 2020 to support and empower families facing untreatable conditions like Alfie’s. She also worked alongside Prof Barnes at Maple Tree Consultants from 2023 onwards to advance the medical cannabis sector.

Hannah continued to share her own story and was invited to speak at conferences around the world, championing the rights of patients and carers at every opportunity. 

Today: Hannah’s legacy

Alfie, now 13, has been seizure-free for four years. He plays football, takes the bus to school, and annoys his sister with his singing. Medical cannabis didn’t just change his life; it changed all of their lives for the better.

Hannah’s life was cruelly cut short in 2025 by a rare and aggressive form of cancer, but her friends and colleagues at the Society remain committed to building on her legacy and continuing to support clinicians with the tools, knowledge, and confidence to prescribe CBPMs safely and effectively for their patients.