Children with severe epilepsy have been offered brain surgery by the NHS before medical cannabis, parents have revealed.
Several families have told the Mail that their children have been offered the 'insanely invasive procedure', which disconnects one side of the brain from the other and can cause vision loss.
One mother refused the operation, which costs the NHS up to £33,400, and requested medicinal cannabis oil – which was legalized five years ago and has proven effective in children with epilepsy.
The oils are administered orally every day and three children in Britain are on NHS prescriptions, with successful results.
But other young people with similar conditions have been denied it, leaving parents to pay up to £2,000 a month to obtain the drug privately, while others cannot access it at all.
Luci Griffin's son Alfie, 13, (pictured together) was diagnosed with intractable epilepsy six years ago and the family have yet to receive medicinal cannabis from the NHS. But last year doctors offered to perform a hemispherotomy on Alfie, temporarily removing part of his skull to operate on his brain.
The family are currently buying a 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 Mrs Griffin has had to stop working to become a full-time carer (stock photo of cannabis concentrate oil)
Luci Griffin's son Alfie, 13, was diagnosed with intractable epilepsy six years ago and the family have yet to receive medical cannabis from the NHS.
But last year doctors offered to perform a hemispherotomy on Alfie, temporarily removing part of his skull to operate on his brain.
The family said they were warned it posed 'a life risk', that Alfie could lose his peripheral vision and need weeks of rehabilitation to learn to walk again.
Mrs Griffin said: 'I don't want to have to turn to him and say we know it hasn't worked… I want to say we did everything Alf, we did everything we could – why wouldn't we? try medicinal cannabis first?'
The family from Peterborough have been refused Epidiolex by the NHS and private clinics that prescribe other oils are unable to help.
In October, the Mail revealed that two families smuggled cannabis oil from the Netherlands in suitcases because the pharmacy dispensing their private prescription did not have sufficient stock.
Ms Griffin said obtaining the drug privately may not even be an option as they would struggle to keep up with the high monthly payments.
'Even if we could (go private), how long can we sustain £2,000 a month? Not for long, because then we would have to sell the house,” the mother said.
The family are currently buying a 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 Mrs. Griffin has had to quit her job to become a full-time caregiver.
She said: 'We are absolutely stuck. Were alone. We have no support.'
Families say they pay between £400 and £2,000 a month to obtain medicinal cannabis privately (stock photo of a scientist checking hemp plants in a greenhouse)
The Mail has spoken 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 cannabis was legalized in 2018, but it didn't work and is now using the oils successfully.
She said: 'If I had known about medicinal cannabis oils earlier, there is no way I would have allowed him to have the surgery.'
The cost of brain surgery for the NHS depends on the age of the patient and the complexity of the procedure, but is typically £7,800 to £33,400.
Families say they pay between £400 and £2,000 a month to obtain medicinal cannabis privately.
An NHS England spokesperson said: 'The decision to proceed with surgery… would be a joint decision between a clinical team and the patient's family and/or carers.'