The BBC are reporting today…
The parents of a three-year-old boy with severe epilepsy are going to court to mount the first legal challenge to the guidelines on prescribing cannabis on the NHS.
Charlie Hughes went from having up to 120 seizures a day to fewer than 20, after receiving cannabis oil privately.
Although medical cannabis was legalised in November 2018, almost no NHS prescriptions have been handed out.
A victory for the family could make the current guidance unlawful.
When the National Institute for Health and Care Excellence (NICE) produced guidance for the NHS, it said there was not enough evidence to recommend cannabis-based medicines for severe, treatment-resistant epilepsy.
Nusrat Zar,(STORY COVER IMAGE) a lawyer working with the Hughes family to campaign for policy change, says although the guidelines did not recommend against prescribing the drug, the lack of a “positive” recommendation meant NHS doctors did not feel confident to do so.
NICE said it would not comment on an “ongoing legal matter”.
Charlie has a rare form of treatment-resistant epilepsy called West syndrome which has left him with developmental delay.
He was given six different anti-epileptic drugs but the family, who are from Norwich, saw no improvement in his condition.
His father, Matt Hughes, said he felt they were “all out of options” after trying all the usual medication, and even exploring brain surgery for which they were told Charlie was not a candidate.
After obtaining a private prescription for cannabis oil, the family said Charlie’s seizures reduced and his development started to speed up.
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He became more vocal, took an interest in his toys and began to feed himself, they explained.
Brain scans also showed a significant reduction in “chaotic brain activity” associated with seizures, Mr Hughes said.
Charlie’s parents say they will only be able to afford another six months of the medication without an NHS prescription.