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Norwich family lobbies parliament over access to medical cannabis

PUBLISHED: 13:40 20 March 2019 | UPDATED: 15:29 20 March 2019

Ali and Matt Hughes, and their 19-month-old son Charlie who has infantile spasms. Picture: DENISE BRADLEY

Ali and Matt Hughes, and their 19-month-old son Charlie who has infantile spasms. Picture: DENISE BRADLEY

Copyright: Archant 2019

A Norwich family travelled to London on Tuesday to lobby parliament on the access to medical cannabis.

Matt and Ali Hughes, from Norwich, were one of 16 families of severely epileptic children who joined the End Our Pain campaign in the capital.

Their 19-month-old son Charlie, whose development is stuck at that of a six month old, suffers from between 40 and 50 seizures a day.

They delivered a petition to 10 Downing Street to raise issues including a lack of prescriptions for medical cannabis given out by NHS doctors and delays in getting hold of the drug.

He was diagnosed with West syndrome, or infantile spasms, at just 10 weeks old. The condition is a severe type of epilepsy and just 400 children in the UK have it.

MORE: Parents’ plea: ‘Why can’t our sick toddler have medicinal cannabis?

Charlie has had clusters of spasms daily since January 2018, and been through piles of medications to try and control them.

And the couple then turned their attention to medicinal cannabis, which was legalised in the UK in November, but is almost impossible to obtain.

The change of law means full extract medical cannabis made by a good manufacturing practice-certified company can be prescribed on the NHS.

Charlotte Caldwell, from Co Tyrone, whose son Billy is being treated with cannabis oil, said: “There is no UK-sourced clinical trials data on the efficacy and safety of cannabis-based medicinal products, therefore the NHS may well state that it encourages specialist doctors to prescribe it, but there’s overwhelming caution amongst the profession when it comes to putting pen to prescription pad.”

Mr Hughes, 39, said he left London feeling encouraged, as the campaign was able to counter any reasons given for not making cannabis readily available.

He said: “We definitely got our story across. Matt Hancock (the health secretary) did come to see us as well and said he would be looking into it.”

Alfie Dingley was the first person in the UK to receive a permanent medical cannabis licence and went on to be granted the first NHS prescription issued after the UK law change.

He was having up to 400 seizures a month but since the prescription, he has had just one hospital admission in a year.

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