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Families using medicinal cannabis 'are being threatened with social services'

PUBLISHED: 20:24 20 May 2019 | UPDATED: 11:39 21 May 2019

Ali and Matt Hughes, and their 21-month-old son Charlie who has infantile spasms. Picture: DENISE BRADLEY

Ali and Matt Hughes, and their 21-month-old son Charlie who has infantile spasms. Picture: DENISE BRADLEY

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A Commons debate has highlighted the NHS barriers families continue to face with cannabis prescriptions, despite it being legal for medicinal use.

Charlie Hughes, 21-months-old, who has infantile spasms. Picture: DENISE BRADLEYCharlie Hughes, 21-months-old, who has infantile spasms. Picture: DENISE BRADLEY

Sir Mike Penning, MP for Hemel Hempstead, led a backbench debate in the House of Commons on Monday in which he stated families were being threatened with social services if they brought medicinal cannabis into a hospital where their child was being treated.

The stigma surrounding NHS cannabis prescription is something Matt Hughes, 39, and his wife Ali, 37, know all too well, as they struggle to secure the product for their 21-month-old son Charlie, who suffers from a severe epilepsy syndrome.

Charlie, who has been diagnosed with West Syndrome, used to suffer around 100 seizures a day, which dropped down to around 20 to 40 after his parents began using CBD oil alongside his other medications.

The couple, from Thorpe St Andrew, buy around 100ml of CBD oil legally online but it is costing them £300 a month.

Mr Hughes said they have tried and failed to get the prescription and so they are left with either turning to private healthcare or travelling to Holland and risking bringing the product through the border illegally.

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Mr Hughes blamed the British Paediatric Neurology Association's guidelines - which do not recommend the prescription of medicinal cannabis that contains a chemical called THC - for the difficulty in getting an NHS prescription, claiming they are based on recreational use of cannabis rather than medicinal.

He said: "We were turned down for Epidolex [cannabidiol] because Charlie doesn't have Dravet syndrome or Lennox-Gastaut syndrome, and the [NHS] trust would block it because of the costs.

Sir Mike Penning said doctors and families have been threatened for trying to use medical cannabis on children. Picture: Sonya DuncanSir Mike Penning said doctors and families have been threatened for trying to use medical cannabis on children. Picture: Sonya Duncan

"With the CBD oil, Charlie's seizures have come down, he seems brighter, happier and more alert. 
"There needs to be more education on the benefits of cannabis - we have to adopt systems in other countries and look at the evidence they have gathered."

It is the same viewpoint echoed by Sir Mike in the Commons debate, where he demanded more be done to get medicinal cannabis to children who need it.

He said: "In the 21st century, why are we allowing these children drugs that are not working, that were never designed for the use they are given?"

He said it was "morally wrong" to sit back while children suffer.

Charlie Hughes, 21-months-old, who has infantile spasms. Picture: DENISE BRADLEYCharlie Hughes, 21-months-old, who has infantile spasms. Picture: DENISE BRADLEY

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