Kids offered brain surgery before cannabis on the NHS.

Liz Filmer
31 Dec 2023

Several families have told a national news agency that their children were offered the 'invasive procedure', which involves detaching one side of the brain from the other and carries a risk of sight loss.

One mother rejected the operation and requested medicinal cannabis oil – which was legalised in 2018 and has proven effective with epileptic children.

The oils are administered orally daily, but only three UK children have so far obtained NHS prescriptions, with successful results.

Other youngsters with similar conditions have been denied it, leaving families paying up to £2,000 a month to get the drug privately, with others unable to access it at all.

Alfie Griffin, 13, was diagnosed with intractable epilepsy six years ago, and his family have so far been refused medicinal cannabis on the NHS.

His mother, Lucie, told reporters that last year, doctors offered to carry out a hemispherectomy on Alfie, which sees them temporarily removing a piece of his skull to operate on his brain. The family 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 that accessing the drug privately was not a long-term option as they would struggle to find the money.

They are presently purchasing a high-concentrate CBD oil from an online supplier, which costs them £300 a month. However Alfie's condition isn't improving and he can no longer attend school.

Reporters have spoken with two other families whose epileptic children were offered brain surgery.' Caroline Gisbourne's son Mitchell, 16, underwent the procedure before medicinal cannabis was legalised in 2018. Still, it didn't work and he has found success 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.'

The costs of brain surgery to the NHS depend on a patients' age and the complexity of the procedure required, but typically it cost between £7,800 and £33,400. Families are currently paying anything between £400 to £2,000 a month for a medicinal cannabis prescription.

 NHS England commented: 'The decision to proceed with surgery... would be a joint one taken by a clinical team and a patient's family and carers.'

More on this topic from Soft Secrets:

New trials for epilepsy

Pros and Cons of Medicinal Cannabis


Liz Filmer