Today the mothers of severely epilieptic children will publicly call on UK health authorities to help fund their medical cannabis prescriptions. One of those, Elaine Levy tells Cannabis Health why she’ll stop at nothing to keep her daughter well.
Elaine Levy hit the headlines in 2019 after she was forced to sell her house to fund her daughter’s medical cannabis prescription.
On Wednesday 16 September she will do so again, this time as she makes another desperate plea to the Government, outside the Department of Health and Social Care building in Westminster.
Elaine’s daughter Fallon, 26, has suffered from a rare form of epilepsy, now known to be Lennox–Gastaut syndrome,since the age of four.
After years of exhausting all conventional treatments and suffering up to 200 seizures a month, Fallon was given a private prescription for medical cannabis in 2018.
But the financial pressure of finding the £2,200 a month to fund it has left Elaine “broken” – both emotionally and financially.
“I’m living in my sister’s flat, I can’t go and buy property because I don’t know how many years it’s going to be,” she says.
Elaine has tried using a cheaper cannabis oil from Israel, which was £600 a month, but it wasn’t as effective and Fallon began having severe seizures again.
“It’s heartbreaking to watch,” she says.
“I can’t go backwards. I won’t allow my daughter to be falling flat on the floor and smashing her head while I’ve got money.
“If I have to lose everything then I will.”
Elaine is not alone. On Wednesday several other mums from the End Our Pain campaign – all in similarly desperate situations – will hold their own vigils across the UK to call on the health authorities to fund their children’s medical cannabis prescriptions.
Katie Sullivan and Benedict Lamb will stand outside the NHS England building and the Palace of Westminster in London, while Karen Gray will be outside Scottish Parliament in Edinburgh and Rachel Rankmore will be outside The Senedd in Cardiff.
Since January, campaigners have been urging Matt Hancock to step in and fund the private prescriptions as an interim measure until the NHS starts to prescribe. But despite providing arguments explaining that it is both legally and procedurally possible, a letter to the co-chairs of the All Party Parliamentary Group (APPG) on Access to Medical Cannabis Under Prescription stated that the Government would not step in.
This latest awareness drive comes following the news from Northern Ireland Health Minister Robin Swann last week which confirmed that the NHS had agreed to fund a prescription for a 15-year-old in Northern Ireland.
Elaine described the move as a ‘breakthrough’ for the campaign.
“We had a letter from Matt Hancock just weeks ago saying that there was no way they could ever fund it,” she says.
“This is a breakthrough for us. What about the rest of these kids? You can’t just pick and choose.
“I would basically go to any length now because I just don’t think it’s fair.”
On a visit to Westminster last year Matt Hancock told Elaine and other mums that if a neurologist feels there are no other options and wants to prescribe medical cannabis they should be able to.
“We just want the Health Secretary to honour his word,” adds Elaine.
“We are all proof that it works because we’ve seen our kids over the last two and a half years.”
A spokesperson for the End our Pain campaign commented: “Everyone involved says they want to help, but the months drag on and these families have not had anything.
“Some of the doctors in leading medical professional bodies constantly say that they want more evidence that medical cannabis works and is safe. What they fail to acknowledge is that these families have got the best evidence of all that it works for their child. They have been securing and administering it for months now with dramatic improvements in their children’s wellbeing.”
They added: “Given what appears to have happened in Northern Ireland we are pleading with Matt Hancock and the health Ministers Jeane Freeman MP in Scotland and Vaughan Gething MS in Wales to find a way to make this work in their jurisdictions.”
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