GUIDELINES surrounding the first NHS-approved cannabis medicines have been strongly criticised by Kenilworth campaigner Hannah Deacon.
Ms Deacon’s son Alfie is one of nine people globally suffering from a rare form of epilepsy which, without cannabis-based medicine, causes him to suffer up to 30 seizures a day.
His case was prolific in legalising cannabis medicine last year, after a special licence granted to him drastically reduced his seizures.
But despite the law change, doctors remained unwilling to prescribe such medicine because of restrictive guidelines. Fortunately Alfie was granted an unlimited supply after medicinal cannabis expert Professor Mike Barnes intervened in the high-profile case.
And now two cannabis-based medicines, which will be used to treat multiple sclerosis and two forms of epilepsy, Lennox-Gastaut and Dravet syndromes, have been recommended by drugs advisory body National Institute for Health and Care Excellence (NICE) for use on the NHS.
The epilepsy medicine, Epidyolex, is purely cannibadial (CBD) based and does not contain THC – the psychoactive ingredient in cannabis – which is combined to treat severe forms of epilepsy in cases like Alfie’s.
But guidance from NICE around prescriptions of cannabis medicine said evidence to support combining treatment with THC was more effective in severe cases, was lacking and low quality.
Although the board did acknowledge more research was needed on cannabis-based medicines to treat forms of epilepsy other than Lennox-Gastaut and Dravet which some 9,000 people in the UK are thought to suffer from.
But Ms Deacon said it left other epilepsy sufferers in the dark and added the medicine only differed slightly from the one used by her son.
She said: “CBD is CBD and just because it has a brand name doesn’t make it different.
“If you look at the guidelines all the way through they cannibadial is safe. So if it is safe then we should see all products with CBD being available to children like mine. It’s really restrictive. Thousands of children up and down country are suffering with severe refractory epilepsy with no access at all which is utterly disgraceful.”
She added it could result in people paying thousands of pounds for private prescriptions or in criminalising themselves to get hold of illegal supplies.
A spokesman for NICE responded: “Our clinical guideline doesn’t make any recommendations about the use of cannabis-based medicines for severe treatment-resistant epilepsy.
“It does, however, acknowledge the need for more research to build the evidence base for the use of these medicines, and supports NHS England’s recent call to collect evidence from both randomised controlled trials and observational studies. “Overall, the guideline makes nine separate recommendations for further research across all the indications and cannabis-based medicinal products covered in the guideline, reflecting the overall lack of clinical and cost-effectiveness evidence for these products.”