A mother has put her house up for sale in order to pay for the only drug that can successfully treat her epileptic daughter: cannabis oil.
Elaine Levy has spent £30,000 – the family’s life savings – on the drug for her daughter, Fallon, but has now run out of the medicine and the cash to pay for it.
Although even though prescribing cannabis oil was made legal last year, it remains unavailable on the NHS.
“We just can’t do it any more,” Ms Levy said. “It’s been a year and three months but we’ve got less than a month’s medicine left and we’re now at the end of the road.
“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.