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Mum's fresh bid for CBD drug on NHS to treat daughter Teagan Appleby's epilepsy is rejected


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A mum who has been fighting for access to NHS-funded medicine for her epileptic daughter says she's been dealt another 'slap in the face' after her latest appeal was rejected.

Emma Appleby, from Aylesham, has spent years campaigning for medical cannabis on prescription to ease symptoms in 12-year-old Teagan, whose seizures have been so severe in the past she has been placed in intensive care.

Teagan Appleby's condition improved dramatically with cannabis medicine
Teagan Appleby's condition improved dramatically with cannabis medicine

But doctors have again refused to prescribe the drug, even though it was licensed for medical use four years ago and is now being routinely used by other children.

The only way Teagan can access something similar is if the family finds £2,000 a month for an unlicensed drug.

And to add insult to injury the licensed medicine, Epidyolex (or Epidiolex), is manufactured just 25 miles away in Sittingbourne.

The drug has proved to be life-transforming for many children, including the likes of Alfie Dingley and Billy Caldwell, who were at the forefront of campaigns during the summer of 2018 that led to the law change.

Teagan's mum says she has responded well to whole plant extract medical cannabis which contains both CBD and THC, the psychoactive compound of cannabis, but sometimes needs to vary the mix of the two main components in light of changing patterns of seizures.

Teagan Appleby has dangerous seizures
Teagan Appleby has dangerous seizures

Having consulted experts in the impact of medical cannabis on childhood epilepsy, Emma believes that her daughter will benefit from having a higher CBD concentration in her medication. This could be achieved by a prescription of the CBD isolate drug Epidyolex.

However, when Emma approached King's College Hospital, London and asked to be considered for a prescription, her request was turned down on the grounds that she had previously used the medicine under the compassionate access scheme that preceded its full licensing, and then moved to another whole plant extract medicine when Teagan's condition deteriorated.

Emma said: "When I thought this whole situation couldn’t get any worse, it has.

"Despite the consistent improvement in Teagan’s quality of life when being administered whole plant extract medical cannabis I have been systematically denied an NHS prescription for it because it’s not licensed and have had to fundraise relentlessly for the last four years to buy it privately.

"And now, when I ask for a prescription of the one relevant medical cannabis drug that is licensed, I am told ‘no’ because I have used it previously. This feels like another slap in the face.’

Ms Appleby is appealing to her MP Natalie Elphicke for help.

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