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Epilepsy

NHS refuses to fund cannabis treatment for young epilepsy sufferer

young epilepsy

Young epilepsy sufferer Louis Petit, four years after a historic campaign to have medicinal cannabis legalised in Britain, is now being blocked from having the life-saving drug by the NHS, a Mirror investigation has uncovered.

As a result of the NHS’ decision not to cover his cannabis medication, the teenager faces a return of life-threatening epileptic seizures within weeks.

Louis, 19 years old, has been bed-ridden and unable to speak properly because of violent seizures in the past.

Four years ago, he moved to Holland with his mother, where the drug Bedrolite can be purchased at a lower price than in the UK.

His mother, Emma, had money donated from family, crowdfunded, and even spent her life savings on Bedrolite.

The seizures Louis suffered from, which can cause permanent brain damage, stopped completely after he weaned off his NHS medication and started using Bedrolite.

The 19-month seizure-free period allows him to focus on what is truly important to him. He is now enrolled in a university degree course in London after completely regaining his health.

However, Louis’ medication is about to expire in August because the family has run out of funds.

Louis told the Mirror: “I’ll lose my life again if I’m taken off cannabis and start having seizures again.”

90 young epilepsy sufferers potentially affected

Despite the law change – and following NHS prescriptions for the three most high profile child cases – NHS England has now halted funding the unlicensed medicines in a secret U-turn.

According to NHS England, trusts are reluctant to pay for such ‘high cost’ unlicensed prescriptions for fear that it will set a precedent and bankrupt them.

The Mirror story reported at least 90 young epilepsy sufferers are having NHS prescriptions denied for the only drug found to halt their life-threatening seizures.

Louis told the Mirror: “Before I was on cannabis I was on a lot of harder drugs that were harder to come off than heroin.

“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.

“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.

“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.”

Since Louis didn’t begin having seizures until he was 12, he has not developed neurological problems as much as a very young epilepsy sufferer might, often disabled for life.

Before discovering Bedrolite, Louis would have a dozen attacks, one after another. A powerful anti-epileptic drug was given to him in the hospital, and he couldn’t recall his words for days.

Neurology experts rule 'it would be unethical' not to fund

Before leaving the UK for Holland, Louis only remained at school in his final term for 7 days, spending most of his time bedridden, only able to watch films.

The talented artist Louis was offered a place at the City and Guilds Art School in London this year, despite the disruption to his schooling.

The family made plans to move back into their central London flat after a panel of expert neurologists at Kings College Hospital ruled that it would be unethical for the NHS not to fund his prescription.

He was, however, turned down out of hand by NHS England when they were submitted an Independent Funding Request (IFR).

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

Hospital trusts can apply for exceptional funding through the standard NHS process for unlicensed ‘high cost’ drugs to NHS England or a regional Clinical Commissioning Group (CCG).

However, NHS England internal advice is that unlicensed cannabis drugs such as Bedrolite are “not eligible” for this Independent Funding Review (IFR) process.

That is despite the latest official published guidance stating that trusts could be reimbursed for unlicensed medicinal cannabis through the IFR process.

Kings College Hospital told Louis it cannot afford to take on the £26,000 annual cost for his Bedrolite.

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