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The mother of a Tyrone boy with epilepsy who wants to be able to control his seizures.
Castlederg boy Billy Caldwell (13) was at the forefront of a high-profile campaign for the relaxation of regulations around cannabis-based products for medicinal use.
If they are determined to have an unmet clinical need, they may be prescribed these products.
The new guidance, drawn up by the British Pediatric Neurology Association, says the only cannabis-based medicine recommended for epileptic children is Epidiolex, a liquid which contains cannabidiol (CBD).
The guidance said "It is not a good thing, because it does not contain THC (tetrahydracannabinol) – the chemical in cannabis that gets you high."
But the medicine that has reduced Billy's seizures from up to 100 a day to almost zero contains a small amount of THC.
Mum Charlotte said: "I feel deeply disappointed and let down, based on the guidelines, that Billy needs will be available.
"As it stands, my wee lad Billy would not be able to get a prescription for his medicine in the UK, and it would be very likely to have a prescription back then it would be confiscated at Heathrow again.
"As a mummy who has seen her wee boy go through hell and back, a great deal of hope and belief has gone out the window.
"There are lots of patients who will be extremely disappointed this morning and for a few weeks or months ahead.
"But promises were made by politicians this summer, and we will make sure the policymakers keep those promises."
Charlotte said it was necessary for the politicians to be certain conditions which can only be treated with medicinal cannabis.
Blair Gibbs, Billy's medicine during the summer, said the process had "moved incredibly fast", but that was still progress which was needed.
Charlotte is now planning a trip to Canada where Billy will be able to get the cannabis-based medicine that has had such a transformative effect on his condition.
Writing on her Facebook page, she asked: "How long are we going to get hold of the country to get the best consultations and medications?"
THC, but to do so the medics would have to go to their professional body.
Belfast Telegraph
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