A mum who fought to make medical cannabis a legal NHS prescription for her son, who suffered up to 150 seizures a week, is now campaigning for other patients to be granted access as he approaches 1,000 days seizure-free.
Hannah Deacon, 43, a campaigner and a director of the Medical Cannabis Clinicians Society, sought a change in the law in 2018 after her son, Alfie, now 11, suffered debilitating seizures from eight months old – which saw him being taken to hospital every week by the time he was five.
Seeing the positive effects of medical cannabis on Alfie in the Netherlands, Hannah successfully campaigned for him to receive the treatment on the NHS.
Now, as he approaches his 1,000th seizure-free day on January 18, she is campaigning again for the treatment to become widely available for other patients, and is preparing to present a petition to the Government which already has more than 700,000 signatures.
Hannah, who lives in Kenilworth, Warwickshire, with her partner, Drew Dingley, 44, a landscape gardener, and their two children, Alfie and Annie, eight, said: “CBD is commonplace in health shops but it is the whole cannabis plant that Alfie needs to stop his seizures, which is still not widely prescribed.
“It’s important to make the distinction because until being prescribed whole plant cannabis, Alfie was enduring weekly hospitalisation and suffering clusters of seizures on a regular basis.”
She added: “He has been predominantly seizure-free and has not suffered a single seizure since May 2020 and, as we approach his 1000th day without seizures, I want to help other patients to receive the treatment.”
According to the NHS, very few people in England are likely to get a prescription for medical cannabis.
Currently, it is only likely to be prescribed for children and adults with rare, severe forms of epilepsy, adults with vomiting or nausea caused by chemotherapy and people with muscle stiffness and spasms caused by multiple sclerosis, but it would only be considered when other treatments were not suitable or had not helped.
Hannah’s nightmare began in May 2012, when Alfie had his first seizure at eight months old.
She said: “We found him in his bed seizing and took him to hospital, he actually ended up being in hospital for four months.
“He suffered clusters of seizures, which meant having lots in a short amount of time and he needed life support for a lot of that.”
She added: “He was seriously ill but none of the seizure treatments available on the NHS seemed to work. He was finally able to go home with steroids which did work.”
But the trauma of his seizures affected Alfie’s development.
Hannah said: “He was severely disabled when he came home, beforehand he had been babbling and doing all the normal things of an eight-month-old baby but the seizures had been very debilitating for him.”
— Hannah Deacon (@Hannah_Deacon40) November 1, 2021
She added: “The seizures didn’t go away, they slowly crept up again and, by the time he was five, he was being hospitalised every week for a cluster of seizures.”
In 2016, Alfie was diagnosed with PCDH19, which is a severe refractory epilepsy condition.
Hannah said: “I realised that the seizures weren’t going away and I was concerned about the amount of steroids Alfie needed to manage his condition.”
“I started researching online about the benefits of cannabis but quickly learnt that it wasn’t available on the NHS.
“While CBD is a common product in health shops, Alfie required whole plant cannabis for his condition.”
Running out of options, the family made the decision to move to the Netherlands in order for Alfie to receive medical cannabis to treat his seizures.
“In January 2017, I set up a campaign called Alfie’s Hope and through it I set up a fundraising page for Holland because we couldn’t afford it otherwise. I was a full-time carer for Alfie and Drew was working all the hours to keep a roof over our heads,” Hannah said.
“We had to raise the money to go to Holland before we moved over in September 2017.
“The difference in Alfie once he got onto the treatment was unbelievable. He went from having multiple seizures throughout the week to only one or two and, before long, none at all.”
She added: “Before we knew it, it had been months since he’d last had a seizure and we were eager to return to the UK, but knew he’d need access to this treatment at home.”
Returning home to Warwickshire in February 2018, Hannah started campaigning for policy change.
She said: “We got about 330,000 signatures on a petition and had a meeting with Theresa May.”
Happy New Year to all who have supported us over the last six years. 🎉 Alfie’s campaign has become so much more than just about him. I so wish the law change had actually helped patients and families like mine. I hope to see the day it does. #Westandwithyou #NHSaccess pic.twitter.com/B1SUWkGm9B
— Hannah Deacon (@Hannah_Deacon40) December 31, 2022
She added: “She allowed our doctor to apply for a medical cannabis licence which was granted, and in June 2018, Alfie was given the first legal NHS prescription of cannabis in the UK.”
After returning home, Alfie had begun seizing again but with his new prescription, his condition stabilised.
Hannah said: “He’s been seizure-free now since May 2020. We’re coming up to 1,000 days with no seizures, which is a miracle. It’s amazing.
“That’s why I’m so passionate about continuing to campaign for other people because I spent weeks and weeks of my life in hospital watching my child suffer.
“He’s traumatised from what he’s been through, and I know that there’s many, many millions of people actually out there, not just people with epilepsy, but many millions of people that are suffering that don’t need to be necessarily if they could access cannabis on the NHS.
“I actually believe it would save the NHS money because we had to look at the costs of Alfie going into hospital every week and we’re actually saving the NHS £150k a year now by using medical cannabis instead.”
Now, Hannah says that Alfie has come on in leaps and bounds thanks to his treatment.
She said: “He now attends a special school and he’s a very happy boy. He does have autism and there are days where we struggle with his behaviour but the difference since he has been on medical cannabis is stark.
“He’s able to make friends and have normal conversations with his peers, he doesn’t need weekly hospitalisation and isn’t having seizures.”
“The medication has completely changed his quality of life.”
Hannah now hopes medical cannabis will become widely available on the NHS for other patients.
She said: “For most people, medical cannabis is only available through private prescriptions but we now have over 700,000 signatures on our petition and we hope to reach one million signatures to present to the Government.
“I’m fighting for change because, as a parent, I know what it’s like to watch your child suffer, and I want to do whatever I can to help.”