The mother of a woman with severe epilepsy has put her house up for sale after spending her family’s savings on private prescriptions for medical cannabis.
Elaine Levy, the mother of 25-year-old Fallon, who has Lennox–Gastaut syndrome, said she had been forced to sell up in an attempt to fund her daughter’s care after spending more than £30,000.
“We just can’t do it any more,” she 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?”
She said her daughter no longer needed a wheelchair after using full extract cannabis oil, after years of taking sedatives. “Her IQ has gone up and she now tells me where to go. It’s not a cure but the result is phenomenal.”
For patients with treatment-resistant epilepsy, the medicine is potentially life-saving but is not widely available on the NHS, despite doctors in England, Scotland and Wales being given permission to prescribe it last year. The growing financial burden has led families to fundraise and sell their possessions.
On Thursday, nine families, supported by the campaign group End Our Pain, invoiced the Department of Health and Social Care (DHSC) for the £231,000 they have cumulatively spent on prescriptions. They did so after holding a silent vigil outside the department’s headquarters.
They then walked down Whitehall and delivered letters – including one signed by more than 100 MPs – to the prime minister urging him to personally intervene.
Outside Downing Street, parents chanted “Medical cannabis stops our children’s seizures” and said they had saved the NHS money at their own cost.
“By us not calling ambulances, having stays in hospitals and being prescribed anti-seizure medicines, we must have collectively saved the health service thousands,” said Craig Williams, the father of 17-year-old Bailey, who has intractable epilepsy but recently caught a ball for the first time after courses of full extract cannabis oil reduced his seizures from 100 a day to one.
“But we still can’t access it without paying thousands ourselves. When they legalised it last year they gave us hope, but the system has failed us.”
The health service has not issued a single prescription for full extract cannabis oil since the Home Office acted to resolve several high-profile cases last year, according to campaigners. However, the medicines are available privately and there have been at least 100 prescriptions, which cost up to £4,000 a month.
A watchdog ruled last month there was not yet enough evidence to prove medical cannabis can help those with severe epilepsy, and there have been calls for observational trials to help establish its widely reported benefits.
The Liberal Democrat leader, Jo Swinson, said forcing families with sick children into a financially crippling situation was “appalling”.
“The government needs to work with the NHS to find a way to get these children this life-transforming medicine not in weeks and months, but immediately.”
A DHSC spokesperson said: “Government is urgently working with the health system, industry and researchers to improve the evidence base to provide clinicians with further support and guidance on prescribing where clinically appropriate.”