Using medical cannabis to treat epilepsy in children is too expensive for the UK’s health service, according to its advisory body.

The National Institute for Health and Care Excellence (Nice) this morning released its findings which concluded the National Health Service cannot afford to prescribe the treatment.

The announcement will come as a blow to hundreds of parents whose children have experienced a huge improvement in their symptoms.

Despite the evidence from patients, Nice report that there is no research on what the long-term effects of using the drug are. Therefore, together with the cost involved, the advisory body has said it will not recommend it for the treatment of Lennox-Gastaut syndrome and Dravet syndrome – two severe forms of epilepsy.

The government instructed Nice to look at the use of the drug in the US where it is widely used, and investigate if it should be available to the NHS.

In its draft guidelines, published today, Nice acknowledged that the treatment reduces seizures but it had serious “concerns about the validity of the economic models” of the suppliers.

Change in legislation

The body did stress, however, that patients currently using medical marijuana products for epilepsy treatment would be unaffected by the findings. It also said it anticipated a change in legislation to make cannabidiol more accessible for private patients.

Early reaction to this morning’s announcement has been one of surprise from several quarters where people were expecting a more favourable outcome for the use of cannabis-derived products.

A Cannabis Patient Advocacy Support Services spokesman branded it “disappointing for parents”, while the head of the Centre for Neuropsychopharmacology, Imperial College London – Professor David Nut – suggested it had now turned the prospect of having effective medication on the NHS into a lost cause.

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