Children with severe epilepsy have been offered brain surgery by the NHS before medicinal cannabis, parents have revealed.
Several families have told the Mail their children were offered the ‘insanely invasive procedure’ which involves detaching one side of the brain from the other and can cause sight loss.
One mother declined the operation, which costs the NHS up to £33,400, and requested medicinal cannabis oil – which was legalised five years ago and has proven effective with epileptic children.
The oils are administered orally every day and three children in the UK have NHS prescriptions, with successful results.
But other youngsters with similar conditions have been denied it, leaving parents paying up to £2,000 a month to get the drug privately, while others can’t access it at all.
Luci Griffin’s son Alfie, 13, (pictured together) was diagnosed with intractable epilepsy six years ago and the family have so far been denied medicinal cannabis on the NHS. But last year doctors offered to carry out a hemispherotomy on Alfie, which would involve temporarily removing a piece of his skull to operate on his brain
The family are currently buying a high-concentrate CBD oil online, which costs them £300 a month, but Alfie’s condition isn’t improving. He can no longer go to school and Mrs Griffin has had to stop work 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 so far been denied medicinal cannabis on the NHS.
But last year doctors offered to carry out a hemispherotomy on Alfie, which would involve temporarily removing a piece of his skull to operate on his brain.
The family said they were warned it carried ‘a risk to life’, that Alfie could lose his peripheral vision and would 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 didn’t work… I want to say we’ve done everything Alf, we did everything we could – why wouldn’t we try medicinal cannabis first?’
The family, from Peterborough, have been refused Epidiolex on the NHS and private clinics that prescribe other oils cannot help.
In October the Mail revealed two families were smuggling cannabis oil from the Netherlands back in suitcases as the pharmacy which delivered their private prescription didn’t have enough stock.
Mrs Griffin said getting the drug privately may not even be an option as they would struggle to keep up with large monthly payments.
‘Even if we could [get it privately], how long can we sustain £2,000 a month? Not for long because we’d have to sell the house,’ the mother said.
The family are currently buying a high-concentrate CBD oil online, which costs them £300 a month, but Alfie’s condition isn’t improving. He can no longer go to school and Mrs Griffin has had to stop work to become a full-time carer.
She said: ‘We are absolutely stuck. We’re alone. We have no support.’
Families say they pay anything between £400 to £2,000 a month to get medicinal cannabis privately (stock photo of a scientist checking hemp plants in a greenhouse)
The Mail has spoken to two other families whose epileptic children were offered brain surgery.
‘You can’t reverse brain surgery, so it seems like madness,’ one mother said.
Caroline Gisbourne’s son Mitchell, 16, had the procedure before medicinal cannabis was legalised in 2018 but it didn’t work and is now successfully using the oils.
She said: ‘If I had known about medicinal cannabis oils before, there’s no way I would have put him through the operation.’
Costs of brain surgery to the NHS depend on patients’ age and the complexity of the procedure but are typically £7,800 to £33,400.
Families say they pay anything between £400 to £2,000 a month to get medicinal cannabis privately.
An NHS England spokesman said: ‘The decision to proceed with surgery… would be a joint one taken by a clinical team and a patient’s family and/or carers.’
