The NHS has systematically refused cannabis treatments for children with epilepsy

While it took 2 and a half years to Billy Caldwell to obtain cannabis-based treatment for his epilepsy, the British association End our pain reports that at least 20 families have been forced to rely on private, paid-for prescriptions for their children's treatment after being turned down for NHS treatment.

Emma Appleby, for example, pays £2,000 (€2,220) a month for medication for her 11-year-old daughter Teagan.

«It's a ridiculous amount of pressure I have every month to try to come up with so much money to keep her alive,» she declared.

In May, when Covid-19 restrictions made fundraising more difficult, Emma Appleby ran out of money to buy Teagan's drug.

Teagan was treated with’Epidiolex, But two weeks without treatment caused her 300 seizures a day to return. Unable to stop the seizures, doctors put Teagan into an induced coma and transported her to intensive care.

Two days later, after receiving an anonymous donation of £2,500, Emma Appleby was able to buy more cannabis oil.

«We woke Teagan up, gave it to her and within two days we were allowed back in,» she said.

The association also deplores the fact that the only children who have been able to get an NHS prescription are those who have received media attention. Medical cannabis would save the NHS millions of pounds a year by reducing the time children with severe epilepsy spend in hospital, it added.

«Why on earth should [families] try to find money to pay for it?» asks the mother of Alfie Dingley, who was able to benefit from an NHS prescription.

The association, supported by Department for Health and Social Care,Epidoylex can be prescribed by the NHS because there is clear evidence of its «safety, clinical efficacy and cost-effectiveness».