Parents are demanding medical cannabis to treat children with severe epilepsy, but NHS is offering them brain surgery first

Children with severe epilepsy were offered NHS brain surgery before medical cannabis, parents have revealed.

Several families told the Mail their children were offered the “sensory invasive procedure”, which separates one side of the brain from the other and can cause sight loss.

A mother refused the operation, which cost the NHS up to £33,400, and demanded medical cannabis oil – which was legalized five years ago and has been shown to be effective in children with epilepsy.

The oils are given orally every day and three children in the UK are given NHS prescriptions, with successful results.

But other youngsters with similar conditions were refused to take it, leaving parents paying up to £2,000 a month to get the drug privately, while others had no access at all.

The family currently buy highly concentrated CBD oil online, which costs them £300 a month, but Alfie’s condition is not improving. He can no longer go to school and Ms. Griffin had to quit her job to become a full-time caregiver (cannabis concentrate oil stock photo)

Luci Griffin’s son Alfie (13) was diagnosed with intractable epilepsy six years ago and until now the family have been refused medical cannabis by the NHS.

But last year doctors offered to perform a hemispherectomy on Alfie and temporarily remove part of his skull to operate on his brain.

The family said they were warned it was a “life risk” that Alfie could lose his peripheral vision and require weeks of rehabilitation to learn to walk again.

Ms Griffin said: “I don’t want to have to turn to him and say we know it didn’t work… I want to say we did everything Alf, we did everything we could – why should we “Don’t do it? ” Trying medical cannabis first?

The Peterborough family were refused Epidiolex by the NHS and private clinics prescribing other oils are unable to help.

In October, the Mail revealed that two families were smuggling marijuana oil in suitcases from the Netherlands because the pharmacy that dispensed their private prescription did not have sufficient stock.

Ms Griffin said obtaining the drug privately may not even be an option as they struggle to keep up with the high monthly payments.

“Even if we could [get it privately]How long can we sustain €2,000 per month? Not much longer, because then we will have to sell the house,” said the mother.

The family currently buy highly concentrated CBD oil online, which costs them £300 a month, but Alfie’s condition is not improving. He can no longer go to school and Ms Griffin has had to quit her job to become a full-time carer.

She said: “We are absolutely stuck.” Was alone. We have no support.’

Families say they pay between £400 and £2,000 a month to buy medical cannabis privately (stock photo of scientist examining hemp plants in a greenhouse)

The Mail spoke to two other families whose children with epilepsy were offered brain surgery.

“You can’t reverse brain surgery, so it seems crazy,” said one mother.

Caroline Gisbourne’s son Mitchell (16) had the procedure before medical marijuana was legalized in 2018, but it didn’t work and he is now successfully using the oils.

She said: “If I had known about medical cannabis oils earlier, there is no way I would have allowed him to have the surgery.”

The cost of brain surgery on the NHS depends on the patient’s age and the complexity of the procedure, but is typically between £7,800 and £33,400.

Families say they pay between £400 and £2,000 a month to buy medical cannabis privately.

An NHS England spokesman said: “The decision to proceed with surgery … will be a joint decision between a clinical team and a patient’s family and/or carers.”