Peterborough family asked doctors for medical cannabis prescription for epileptic son; NHS offered brain surgery

An exasperated Peterborough mum has spoken of her shock after doctors offered her son brain surgery to help treat his epilepsy.

Luci Griffin said she was offered the treatment for her son, Alfie, instead of a prescription for medical cannabis which she requested.

“It’s insane that the only option the NHS has given us is major brain surgery,” said Luci, who lives in Walton with Alfie, 13, and her husband.

The operation, which Luci describes as 'insanely invasive’, involves detaching one side of the brain from the other.

As well as being hugely expensive, the procedure carries significant risks, with sight loss, impaired mobility and even a potential personality change among the possible side effects.

Alfie, who also has autism and cerebral palsy, was diagnosed with epilepsy when he was seven.

In recent years, his diagnosis has been upgraded to ‘intractable epilepsy’, meaning it cannot be controlled by pharmaceutical medicines.

Luci is further dismayed by the fact that the operation was offered instead of what she claims is a cheaper, safer and more effective treatment - medical cannabis.

The 47-year-old mum has repeatedly asked the NHS for Alfie to be prescribed with the controversial medicine, which was legalised five years ago and has been available on prescription for some time in countries like Canada and the Netherlands.

Luci knows there are children within the UK who are receiving medical cannabis via NHS prescription.

However, whenever she has approached consultants at the Peterborough, Cambridge, and London hospitals where Alfie receives his care, she has been refused the prescription.

“They shoot you down straight away,” she says: “they give you a standard response of ‘there isn’t enough evidence and, as such, it cannot be considered an effective treatment’.”

“If that’s the case then why have they given it to three other children in this country to successfully treat their epilepsy?”

As for the claims of not being an effective treatment, Luci hit back:

“They [the children] are now seizure free.”

There are currently two private doctors within the UK allowed to prescribe medical cannabis. However, these are considered a ‘closed shop’, and typically charge customers £2,000 per month.

”Even if they could prescribe it,” Luci offers with a sigh, “we couldn’t afford it.”

Unable to source private care and ‘unentitled’ to NHS prescriptions, Luci and her husband are at their wits end.

Alfie’s epilepsy is now so severe that he is unable to go to school, and Luci has had to give up work to become his full-time carer.

“My son has no quality of life,” says the beleaguered mum, “We have to hold his hand to take him from room to room.”

Alfie is also unable to leave the house without a wheelchair, and cannot go to the toilet unaided.

“He can’t do anything,” she explains, “there’s nothing he can do without either me or his dad with him.”

Devoid of options, Luci has joined other families to campaign for a change in policy from the NHS.

In recent months, she and her husband have been to the Houses of Parliament and Downing Street, and given interviews to major news networks.

“The only thing we can do is keep fighting in the hope that somebody somewhere changes their mind.”