A youngster who once experienced 500 potentially fatal fits per month will mark his 1,000th seizure-free day with UK medical cannabis.
Currently only three people in the UK—including Alfie Dingley, who has severe epilepsy—have received an NHS prescription for the medication.
Hannah Deacon, the child's mother, claims that since cannabis became legal for medicinal use on November 1, 2018, it has significantly improved the 11-year-quality old's of life.
"Thousands of people, however, continue to be unable to obtain subsidised prescriptions, forcing their families to pay thousands of pounds each month to go private or purchase the medication illegally which is essentially the same thing - just illegal" - Sam, ProperKushty.
In accordance with recommendations from the National Institute for Health and Care Excellence, doctors may recommend UK medical cannabis if the available data support its potential benefits.
However, the British Paediatric and Neurology Association opposes the use of whole-plant medical cannabis, which contains the psychoactive compound THC, on the grounds that the companies making the products have not carried out the necessary clinical research to demonstrate its safety.
NHS Prescription Cannabis
This approach, according to Hannah, 43, who co-founded MedCan Support for families seeking access to medication, has put "a block" on NHS prescriptions.
She described how UK medical cannabis had restored Alfie's "quality of life," enabling him to enrol in school full-time and begin meeting friends.
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She added, however, "Some people, during a cost-of-living crisis, have no choice but to spend $24,000 a year just to protect their child.
"We see families fundraising, which is demoralising, but some turn to the black market, where they buy products they don't know are safe for consumption and run the risk of being caught.
Up to 1.8 million people use illegal cannabis for health purposes. It is the duty of the government to protect them.
Bedrolite, a CBD oil with less than 1% THC and 7.5% CBD, is on funded NHS prescription for Alfie, a child with autism who began having seizures as a baby.
When the Home Office granted his doctor the first licence to recommend medical cannabis in June 2018, he made history. Alfie has already gone 985 days without having a seizure, and he will reach the 1,000-day mark next month. Alfie is proof that it works, and he is safe, according to Hannah.
Although it is not a miracle cure—he still has epilepsy—the absence of seizures has allowed him to sleep and interact with others.
He now lives with more quality thanks to it. Before, he was only able to speak in two or three sentences. Now that he is reading, he is learning about common relationships, understanding them, and asking questions. I have gained friends as a result of him making friends.
Eight-year-old Annie's mother, Hannah, is aware of 80 other families who are currently paying for the same CBD oil that Alfie uses. She expressed frustration over the "inaction" in the industry but expressed a desire to speak with the new Health Secretary Steve Barclay about expanding access to UK medical cannabis.
She also discussed how a comparable office to the one that already exists in Holland, the Office for Medicinal Cannabis, might generate thousands of employment and a multi-billion pound sector in the UK.
UK Cannabis: Government Continues To Fail The UK
"The Government has failed in the previous four years to ensure policy is implemented so children with short lifespans are treated," said Hannah of Kenilworth, Warks. They are unheard. Knowing that hundreds of kids could benefit from the prescription and that it has altered Alfie's life is terribly terrible.
In order to inform future NHS funding decisions, the Department of Health and Social Care stated: "We are working closely with partners to establish clinical studies to examine the safety and efficacy of more cannabis-based products for therapeutic use."