The mother of a severely epileptic daughter is urging better access to medical cannabis after holding a vigil at the Department of Health and Social Care in an attempt to speak with Health Secretary Matt Hancock about the issue.
Elaine Levy, from north-west London, said her daughter Fallon had “no quality of life whatsoever” before she began using full extract cannabis oil, which dramatically reduced the number of her seizures.
Spending £2,200 per month on private prescriptions, Mrs Levy said she had to sell her family home to pay for the treatment.
She is one of five parents who held a vigil at health authority buildings in England, Scotland and Wales on Wednesday, in protest against being denied NHS prescriptions despite medical cannabis being legalised in 2018.
“I’m not saying it was a cure, because she still has episodes, but she actually has life now. It’s remarkable,” Mrs Levy told the PA news agency.
“I mean, otherwise I wouldn’t have sold my home, and I wouldn’t have fund-raised, and gone through hell.
“And I wouldn’t be sitting in his (Matt Hancock) building now asking to see him because I can’t sleep at night. I don’t know how much longer I can continue on.”
Mrs Levy said that the devolved administration in Northern Ireland had recently stepped in to offer assistance to a family encountering a similar problem.
She said this was part of the reason to hold the one-woman vigil, as well as it being an attempt to speak with the Health Secretary, who she said met with the campaign group in Westminster some two years ago.
“Matt Hancock said that he would do everything to help and he also said to me that if the neurologist wants to prescribe it, they should be able to,” she told PA.
“My head neurologist has tried to get it for me and he’s just been turned down, time and time again.
“So I’ve come here today because I’ve got nowhere else to go. I’ve tried all the routes.”
Doctors can legally prescribe medicinal cannabis, but have been reluctant to do so – citing a lack of clear guidance on prescribing and issues over funding.
Billy Caldwell, from County Tyrone in Northern Ireland, was the first person in the UK to receive an NHS prescription for the treatment in 2017.
The families of Billy and Alfie Dingley – both of whom have severe epilepsy – have repeatedly campaigned for easier access to cannabis medicines in the UK.
A Department of Health and Social Care spokeswoman said: “We sympathise with patients dealing with challenging conditions and the decision on whether to prescribe medicinal cannabis is ultimately one for clinicians to make.
“Since the law changed, two cannabis-based medicines have been made available for prescribing on the NHS for patients with multiple sclerosis or hard to treat epilepsies, where clinically appropriate. This follows clear evidence of their safety, clinical and cost effectiveness.
“However, more evidence is needed to routinely prescribe and fund other treatments on the NHS and we continue to back further research and look at how to minimise the costs of these medicines.”