While cannabis has been legal for medicinal use in the United Kingdom since 2018, thousands of people are still unable to access funded prescriptions. This has left many families shelling out large sums of money to pay for the medication or even seek out the illicit market. Now, one U.K. mom is speaking out about the huge difference medicinal cannabis has made to her 11-year-old’s life, shedding light on the importance of improving accessibility of the plant medicine.
Alfie Dingley is one of only three people in the U.K. with a prescription from the National Health Service (NHS). Alfie used to endure 500 life-threatening fits a month, and thanks to medical cannabis, he’s eager to celebrate his 1,000th seizure-free day, Mirror reports. Alfie, who is also autistic, started having seizures as a baby and has a funded prescription for Bedrolite, a CBD oil with less than 1% THC and 7.5% CBD.
Alfie’s mother Hannah Deacon said she knows of 80 other families currently paying for the same CBD oil he is prescribed, calling the “inaction” in the sector frustrating.
Currently, the National Institute for Health and Care Excellence Guidance allows clinicians to prescribe medical cannabis to patients, so long as the evidence shows it could be beneficial. The kicker is that the British Paediatric and Neurology Association does not support the use of whole plant medicinal cannabis, which contains THC. The association claims that the firms producing these products have yet to undergo the required clinical trials to prove their safety.
Deacon also co-founded MedCan Support, built for families like hers trying to access medicinal cannabis. She believes that this stance has created a “block” on NHS prescriptions. While she expressed her gratitude for Alfie’s access to the plant medicine—saying he has his quality of life back, he can attend school full-time and he is beginning to make new friends—she nodded to those families who need access to the same care.
“Some people have no choice but to spend £24,000 a year during a cost-of-living crisis just to keep their child safe,” Deacon said. “We see families fundraising, which is demoralizing, but others are going to the illegal market, where they don’t know what’s in the product and they are risking prosecution. As many as 1.8 million people use illegal cannabis for medical reasons. The government has a responsibility to keep them safe.”
Deacon admitted that cannabis isn’t necessarily a “miracle cure,” given that Archie still has an epilepsy condition, but the lack of seizures helped him to sleep, engage and embrace a new quality of life, she said.
“He’s reading—before, he couldn’t say more than two or three sentences—and he is learning and understanding normal relationships and asking questions,” Deacon continued. “He has made friends and as a result, I have made friends.”
Deacon isn’t the only mother who has spoken out about the issues surrounding medicinal cannabis access in the U.K. Earlier this year, Edinburgh, Scotland mom Karen Gray spoke out about her fears for her son, Murray, who similarly had hundreds of seizures a day before using medical cannabis.
With the retirement of Murray’s doctor, the Gray family will have to rely on a cannabis clinic to receive the treatment used to alleviate Murray’s epilepsy symptoms. Gray and another specialist said the problem could be avoided if Murray, and other cannabis patients, could just get prescriptions from NHS doctors. This is on top of the already-high prices the Gray family pay for Murray’s medicinal cannabis, around £1,300 a month (nearly $1,500 USD).
Another British mother, Sarah Sugden, urged the NHS or a private doctor to prescribe her son, Isaac, medical cannabis to no avail earlier this year. Isaac has up to 80 seizures a day, and Sugden tried 13 anti-epileptic drugs with no luck. While Sugden said she felt as though all other options were exhausted, she also can’t get the NHS to budge.
“Isaac spends most of the day screaming or sedated. He is trapped in himself and can’t engage with the world around him,” she told iNews. “He is not living, he’s just existing. He gets no enjoyment or pleasure from anything and doesn’t watch television or play with toys. He just sits there. I have seen what cannabis oil has done for other children who have accessed it. Some of them are thriving. I want Isaac to be the child he was before epilepsy.”
Deacon plans to meet with the new Health Secretary Steve Barclay to discuss how to make medicinal cannabis more accessible. Alfie will celebrate his milestone of 1,000 seizure-free days in mid-November.
