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Mum finds cure for 6-year-olds severe epilepsy but NHS won't prescribe it

'I want to enjoy the time I have with my boys - not spend all my time fighting for what’s already legal due to red tape.'


An East Kilbride schoolboy with severe epilepsy is being denied access to medical cannabis on the NHS, seven months after the Government changed the law to help save children's lives.

Mum Lisa Quarrell is desperate for cannabis oil with a crucial active ingredient to be prescribed to her son Cole.

She says that a carefully controlled amounts of THC, the psychoactive part of the plant, has transformed her son's condition - but the NHS are refusing to prescribe the drug.

Little Cole suffers from what is described as 'uncontrollable drug resistant epilepsy ' and Todd's paralysis which means his body freezes temporarily after his seizures.



Having gone through brain surgery at just two years of age, Cole has been on 16 different medications since he was three - and Lisa said none of them had worked, leading to around 10 seizures a night, as well as a slowing of Cole’s speech, and paralysis down his right side.

In February the family thought their prayers had been answered when the schoolboy become one of only 10 children in Scotland to receive it access to cannabidoil (CBD) medication called Epidiolex.

But instead of getting better, Lisa says Cole’s condition went from bad to worse and Lisa believes he urgently needs a more potent form of treatment.

She said: “When he started Epidiolex he continued to decline really quickly which resulted in him being unable to walk and talk and even swallow.


Cole, 6, with mum Lisa


“He got so sick in the six weeks he was on it I believed I was losing him and I made the decision to take him off it to try to stop his rapid decline.”

Since November, cannabis-based products have been made available for medicinal use only in Scotland, England and Wales. But the oils available on the NHS don’t include THC, the chemical in marijuana that gives users a high.

Lisa said: “I now know Cole needs whole plant. Epidiolex is a CBD isolaten and that’s not enough for Cole as he needs a small amount of THC.

“Without THC Cole's only options are a second brain surgery or retrying the medications he’s already tried which were unsuccessful.”

Through private doctors, Cole was given the whole plant including the legal limit of THC in December and January - which Lisa says helped him although his seizures didn’t completely stop. The real breakthrough was that his Todd paralysis vanished after only a week of using.

Now Cole has a THC prescription from a private doctor in London - but with each bottle costing £550, the expense is a big strain for Lisa and families in similar situations.

Lisa, who was part of the campaign for a change in the law last year, says without a prescription for THC she is terrified Cole’s condition would deteriorate once again if she stopped managing to pay for the medication herself.

She believes access to the drug could save the lives of Cole and other children across the UK.

She said: “Our kids go through hell daily they deserve the chance to try this medicine and we as parents deserve to feel supported by the amazing clinicians looking after our children.”


Cole Thomson (Image: handout)


She added: “It would change our lives for the better. “I have two boys and my other son needs his mum too. “

“I want to enjoy the time I have with my boys when Cole is better not spend all my time fighting for what’s already legal due to red tape.”

A spokesman from NHS Greater Glasgow and Clyde said: "We have been granted five licenses for Epidiolex and Cole is one of the children chosen to receive it.

"At this time, no research trials on whole plant medicinal cannabis have been carried out.

"Without any clinical evidence backed by trials, we follow British Paediatric Neurology Association advice that the treatment is not appropriate in treating Cole’s condition."

[source: glasgowlive.co.uk / published: June 8. 2019]
 

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