Boris Johnson has been urged to “make access to medicinal cannabis products on the NHS a reality” by the mother of Alfie Dingley, who she says is only one of three patients with a prescription for this treatment.
Hannah Deacon has written to the prime minister to ask him to ensure other children can get the same treatment as nine-year-old Alfie, which she said “saved his life” and “stopped his severe epileptic seizures for many months at a time” .
Alfie, who has a rare form of epilepsy, was the UK’s first patient to get a permanent license to be prescribed medicinal cannabis on the NHS when he received one several years ago.
Specialist doctors have been allowed to prescribe medicinal cannabis to patients since 2018, when the government changed its rules over the treatment following a high-profile campaign by families, including Alfie’s parents.
In her letter to Mr Johnson, Ms Deacon said: “It soon became clear that the legal change was, however, well intentioned, a complete failure, with families still denied access to an NHS prescription at every turn.”
She added: “So far, just three prescriptions for whole plant cannabis have been issued on the NHS, and every single one of these children had a media campaign behind them to put pressure on the government.”
Ms Deacon put this down to these unlicensed medicines not being commissioned on the NHS.
She said the National Institute for Health and Care Excellence, an advisory body, relies on evidence from randomised controlled trials (RCT).
“RCT data which is designed for single compounds, cannot effectively gather data on the medicinal properties of this plant without losing the benefits of the whole plant,” she said.
“Unless the fact is more widely acknowledged, we will remain forever stuck with access blocked for very poorly children who are either left suffering unnecessarily, forced to pay thousands of pounds privately or even more worrying drawn to the black market.”
Ms Deacon added: “This abominable situation is putting the power of some of these children’s wellbeing at the hands of criminals.
“As a parent, you would do anything to ease the suffering of your child and that is what we are seeing: desperate parents forced to purchase dangerous products off the black market to treat their children with substandard, dangerous, and most importantly illegal products.”
She asked the prime minister to meet with her to discuss how to “stop this suffering” of patients and “make access to medicinal cannabis products on the NHS a reality”.
Earlier this year, campaign groups said more needed to be done to increase the availability of this treatment on the NHS for children with severe epilepsy.
A NICE spokesperson said: “The fact that NICE made no population-wide recommendation for the use of cannabis-based medicines for people with severe treatment-resistant epilepsy should not be interpreted by healthcare professionals as meaning that they are prevented from considering the use of these medicines where that is clinically appropriate in an individual case.
They added: “Patients in this population can be prescribed cannabis-based medicines if the healthcare professional considers that that would be appropriate on a balance of benefit and risk, and in consultation with the patient, and their families and carers or guardian. We have clarified the guideline to make this clear.”
A Department of Health and Social Care spokesperson said: “The government changed the law to allow specialist doctors to prescribe unlicensed cannabis-based products for medicinal use where it is clinically appropriate and in the best interests of patients.
“Licensed cannabis-based medicines are funded by the NHS where there is clear evidence of their safety and clinical effectiveness.”
Downing Street has been approached for comment.