The parents of a daughter with severe epilepsy staged a protest outside Downing Street today (Friday, March 26) to demand a way to access medicinal cannabis on the NHS.

Graham and Elaine Levy held signs bearing their daughter Fallon's picture and called on Prime Minister Boris Johnson to make medicinal cannabis that can treat her condition available on the NHS.

Fallon has a particularly acute and complex form of child-onset epilepsy called Lennox–Gastaut syndrome (LGS) that causes her to suffer around 200 seizures a month.

Speaking to reporters outside Downing Street, Elaine said that she had been forced to sell her home to pay for Bedrolite, the cannabis oil that reduces Fallon's seizures to closer to five a month.

Fallon has also increased her independence, improved her speech and no longer needs a wheelchair thanks to the oil, which was described as "life-changing" by the family.

However, because it is not currently available on the NHS, the Bedrolite treatment costs around £2,500 per month, a cost Elaine said was not sustainable in the long term.

"I made the decision a year ago to sell my home so I could take some money out of there so I could have a pot to keep paying for Fallon," Elaine said.

"Because the thought of going back to how she was before is not an option. That isn't going to last forever.

"So I just need Boris Johnson to just give us the NHS prescription so she can have a normal life, I can have a normal life and our family can have a normal life because at the moment I can't sleep at night and I don't know what I'm going to do each and every month," she added.

The protest comes just days after Conservative MP Sir Mike Penning urged the Prime Minister “as a father” to ensure any sick child in need of medical cannabis for treatment has access to it.

Sir Mike (Hemel Hempstead) told the Commons: "Before the Prime Minister became Prime Minister we had a discussion to do with the prescribed medical use of cannabis and how it was helping to save really seriously ill children – not hundreds of thousands, but about 150.

"We changed the law in November 2018 to make it legal for these prescriptions to be written, prescriptions written by top consultants.

"Today, we have three children that have it free on the NHS and around about 150 children that have to beg and borrow from their families and re-mortgage their homes so that they can actually pay around about £2,000 a month.

"Prime Minister, this is wrong. As a father, like I am, you would do everything possible for your families and these families are doing everything possible for their children.

"Can we have a follow-up meeting from the one in 2018 where I will bring one of the mothers who actually gets it free – not to stop her getting it free, but to allow her to explain to the Prime Minister how wrong this is that children’s lives are going to be lost if we have to go through the process that the NHS is proposing?"

Boris Johnson replied that Sir Mike is “right” to raise the matter, adding that the Government "will make sure that we have a proper meeting with the Department of Health so that we can resolve the issue".