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UK: A reflection: a mum whose fight for her child helped change the law. Hannah Deacon Matt Maddren Hellowrayo Friday 09 May 2025 I first met Hannah Deacon from Kenilworth seven years ago when she was fighting to get access to medical cannabis for her son Alfie, who has a rare form of epilepsy. Earlier this week, she died aged 45, after announcing she'd been diagnosed with cancer under two months ago. As tributes are being paid, I've been reflecting on her determination to help her son, and what it was like to be with her at Downing Street as she took the fight to access medicinal cannabis right to the heart of government. When we first met in the Spring of 2018, Hannah had recently returned from Holland where Alfie was receiving treatment for his epilepsy. It was immediately clear how determined Hannah was to get Alfie the support he needed to get better - and she was prepared to go to the very top to do so. Hannah described how Alfie could have up to 150 seizures a day, greatly impacting his quality of life. He and Hannah spent a lot of time in hospital. Steroids were being used to try and help, but having little impact. Hannah started researching different treatments that could help reduce Alfie's seizures. She found case studies from families using medical cannabis, and soon the trip to Holland was booked, where the treatment was legal. Using cannabis as medical treatment When you hear the word 'cannabis', you probably think of the illegal drug that can make you high. It's rated as Class B in the UK - this means that you can be jailed if you are caught with cannabis it in your possession, or supplying it to others. There is, however, growing evidence that cannabis can have many medical benefits - when taken correctly. For Alfie, taking medical cannabis dramatically reduced the amount of seizures he was having. The family wanted to leave Holland, and Hannah wanted his treatment with cannabis oil to continue when they returned to the UK. This was where Hannah's determination really kicked in - she simply wouldn't take no for an answer. She campaigned widely to raise understanding and awareness of the benefits she had seen medical cannabis have for her little boy. Hannah and Alfie were even invited to Downing Street to meet Theresa May, who was then Prime Minister. When we spoke after the visit, Hannah seemed to have mixed feelings - she seemed to be worried that it would come to nothing, but she always appeared hopeful that all of the campaigning would pay off and Alfie would get the treatment she believed in. A breakthrough In June 2018, the UK government granted a special license for Alfie to continue his treatment at home. Then, in November that year, the law was changed to allow specialist doctors to grant the use medical cannabis as a treatment on the NHS. When we met at their family home a few weeks later, it was clear how relieved Hannah was that she could get back to focusing on her number one priority - being a Mum to Alfie, and Annie who was only a toddler at the time. She was always clear this wasn't a miracle cure. Alfie still has learning difficulties and needs support - but his condition is a million miles better than what it used to be. Hannah was always realistic with me about what she thought medical cannabis could do - Alfie still needed support for his health needs, but the amount of seizures had drastically reduced, meaning less time in hospital and a greater quality of life. Campaigning at Westminster The change in law was finalised, yet Hannah was acutely aware of all the families with sick children who weren't receiving the treatment. Hannah worked closely with them, eventually joining a group of families in Parliament in March 2019 to ask MPs to help them, The event was held in a committee room, and several MPs attended to co-sign a letter calling for change. Then, in a surprise to everyone, then health secretary Matt Hancock appeared out of nowhere. Most of us in the room were caught off guard - but his visit didn't appear to faze Hannah, with her engaging Mr Hancock in a tense but respectful discussion. Events like Hannah's visit to Parliament can be manic. Countless attendees and journalists wanted to speak to her, but Hannah was always a powerful and engaging speaker. That day, after the best part of four hours of speaking with the media in parliament , I interviewed her outside the gates of Downing Street as the campaign's latest petition was handed into Number 10. Unperturbed by the chaos of the day, Hannah was the most passionate I'd ever seen her, firmly focused on the cause. Interviewing Hannah It was a privilege to build such an enduring working relationship with Hannah. The trust she gained from her work with families shone through in how she spoke about them, and it was clear how determined she was to continue her fight for their children as she had for her own son. Since I moved away from the West Midlands we spoke less frequently, but I've always kept track of her campaigning. When we spoke in 2023, as the 5th anniversary of the law changing approached, I asked her "why do you keep doing this work?" This may seem a little dramatic, but I was interested in how long Hannah would continue to campaign. This was a Mum who had fought for such a long time to get the right treatment for her child. She had won that battle, and supported countless others - no one would have begrudged Hannah withdrawing from the public eye to focus on being with her family whilst others continued her work. Her answer was striking; "There are families across this country who are suffering and desperately need help. I can't stop now and let them down, we need to keep fighting." If there was ever a sentence that epitomised Hannah Deacon's spirit, this was it. She'll be missed not only by her family, but by the families across the country who she stood alongside. Hannah's legacy will doubtlessly continue. https://hellorayo.co.uk/clyde/uk/news/hannah-deacon-medical-cannabis-campaigner-reflection/
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