'Torment' for family of epileptic youngster over medicinal cannabis doubts

Ali and Matt Hughes and their son Charlie pictured in 2019

Ali and Matt Hughes and their son Charlie, pictured in 2019 - Credit: Denise Bradley

Families of children with epilepsy say they face months of torment after learning access to a "life-saving" medicinal cannabis product is in doubt for next year.

The unlicensed medicine Celixir20 has been privately prescribed to a small number of children in the UK, but the past two weeks had seen confusion and anger from families who feared imports had been stopped completely.

Norfolk father Matt Hughes, a co-founder of Medcan Support, whose five-year-old son Charlie has a form of severe epilepsy, said he was "completely devastated" to be notified imports were ending.

Charlie Hughes

Charlie Hughes, pictured at 19 months old, has a form of severe epilepsy but now aged five he has seen seizures reduced after being prescribed Celixir20 - Credit: Denise Bradley

The Medicines and Healthcare products Regulatory Agency (MHRA) has said the import will continue until at least the end of this year, although uncertainty remains over the long-term future.

Mr Hughes, who lives in Thorpe St Andrew, said his son used to suffer from more than 100 seizures a day, but since being prescribed Celixir20 in May 2020 has seen an 85pc reduction in seizures.

He said: "This year he's been seizure free. It's not just the cannabis, but a combination of medicines that are finally helping him. He's now reaching new milestones, and if we stop or change anything, it could all go backwards, which would be detrimental to his development and his health.”

He fears the potential health risk will see Charlie go back to hundreds of seizures per day and might be back into intensive care. 

MedCan Support, which describes itself as a non-profit community interest company, said around 30 children will be impacted if the MHRA does not continue to allow imports.

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It follows families being notified the MHRA had taken the decision last year that it would no longer process import notifications on the grounds of patient safety.

Celixir20 

Uncertainty remains over the long-term future of imports of Celixir20 - Credit: PA

A letter sent by the MHRA to Mr Hughes in June said manufacturing standards in Celixir20's country of origin are not equivalent to Good Manufacturing Practices standards for medicines in the UK.

MHRA chief healthcare, quality and access officer, Dr Laura Squire, said: "We recognise the importance of these cannabis oil products for children with severe forms of epilepsy.

"That is why we are enabling continued patient access to them by accepting applications to import. No parent should have cause for concern about ongoing supplies."