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UK Teen’s Seizures Return After Government Denies Cannabis Coverage

A.J. Herrington

By A.J. Herrington

June 30, 2022

Cannabis joint pattern on green background. Concept of medical cannabis, therapeutic cannabis, alternative medicine

iStock

A United Kingdom teenager is facing the return of

with his impending loss of access to a cannabis-derived medication, prompting the boy and his mother to call on the government to change its policy on medical cannabis.

Louis Petit is seeking approval from the U.K.’s National Health Service to cover the cost of the cannabis drug Bedrolite, which he has been taking to treat a neurological disorder that causes epileptic seizures. Before he began taking the drug, he would have up to a dozen seizures in succession, leaving him vulnerable to brain damage and other serious complications. Louis would spend days in the hospital being given powerful anti-epileptic drugs, which left him unable to speak and bedridden.

“Before I was on cannabis I was on a lot of harder drugs that were harder to come off than heroin,” Louis Petit

. “They stopped me from processing information, I was completely unaware. I couldn’t remember anything. I couldn’t have proper conversations and I would drift in and out.”

Four years ago, Louis’ mother Emma took him to the Netherlands so he could take Bedrolite, which is more affordable there than in the U.K. After beginning treatment with the cannabis-based medicine and weaning off other drugs, his seizures stopped completely and have not returned for 19 months.

Emma turned to

and donations to buy Bedrolite, eventually exhausting her life savings to purchase the medication for her son. Now unable to afford the medicine any longer and with only enough on hand to last until August, Emma and Louis are asking the NHS to begin covering the cost.

“I’ll lose my life again if I’m taken off cannabis and start having seizures again,” Louis said.

Louis and Emma made plans to return to the U.K. after a panel of expert neurologists at Kings College Hospital ruled that it would be unethical for the NHS not to fund his prescription. Louis, a talented artist, has been accepted to university and hopes to begin his studies this year. But without the medication, that might not be possible.

“Once I was taken off those drugs and on to cannabis that has much weaker side effects… it feels like I’ve woken up from a coma,” he said. “Now I’m about to start my life and go to art school. I just want to live my life as a normal adult but I can’t do that if I don’t get the cannabis medication.”

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Medical Cannabis Approved Four Years Ago

In 2018, U.K. Secretary of State for Health and Social Care Sajid Javid, who was Home Secretary at the time, announced that cannabis-based medicines would be made available to some patients. After receiving advice from medical experts, Javid said that medicinal cannabis products would be rescheduled under U.K. drug laws and clinical specialists would be permitted to prescribe them for patients “with an exceptional clinical need.” But since then, the NHS has only approved a few prescriptions for medical cannabis on a case-by-case basis.

An investigation by The Mirror found that the NHS is funding cannabis medications for only three patients and has refused to cover prescriptions for nearly 100 more. Hannah Deacon, the mother of one of the patients now covered by an NHS prescription for Bedrolite, said the government’s failure to cover cannabis medication is “a national scandal.” 

“People think this issue has gone away and it really hasn’t,” she said. “At the center of it are some of the most vulnerable people.”

“This medicine was made legal in 2018. My son has a prescription and two other children have prescriptions. So if it’s not safe then why did that happen? The Government says we want more data but that’s not helping children now,” Deacon added. “Children need help now. If a doctor is happy with that then there should be a route to funding that medicine. and there just isn’t at the moment.”

“We hear heartbreaking stories from mums saying ‘my doctors told me to go home and just keep my child comfortable and hope for the best’. It is just disgraceful when there is a product that is unlicensed, yes, but lots of children get prescribed unlicensed medicines all the time.”

Louis’ mom Emma has developed PTSD over fears that her son’s seizures will return. She is calling on U.K. health authorities to begin funding cannabis medications for Louis so he can continue his recovery.

“He can’t wait to go to university but what’s happening now is like his life is in danger again,” she said. “That axe is hanging over our heads again.”

A.J. Herrington

About The Author

A.J. Herrington

HIGH THERE MISSION

WE’RE A CREATIVE COMMUNITY — EXPLORING THE SCIENCE, CRAFT, AND CULTURE OF CANNABIS.
WE BELIEVE THAT WE HAVE A COLLECTIVE RESPONSIBILITY TOWARDS ERADICATING THE STIGMA, MISINFORMATION, AND INEQUITIES SURROUNDING THIS PLANT, SO WE CAN UNLOCK ITS TRUE POTENTIAL FOR ALL.

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