“Why am I having to beg when it was made legal last November?”
After the high-profile campaign surrounding Alfie Deacon to legalise the drug for treatment-resistant epilepsy sufferers, the Levys tried to get the drug on the NHS.
Despite the support of two neurologists, they failed to get the NHS prescription and the only way they could circumvent the red tape was to go the Netherlands and get it prescribed there by a Dutch GP, where it is £2,500 a month cheaper than if they were to get it in the UK.
Alfie Deacon was the only person to have an NHS prescription, and no others have been given the same dispensation since the law change.
The Levys have since joined the campaign led by parents with children with similar conditions — called End our Pain — to have the medicine made available on the NHS.
Since taking the drug, Fallon could spend a whole day out for the first time in 20 years. She was even able to enjoy food fully, free from the impact of sedatives, and her IQ has improved.
