The families taking medicinal cannabis fight to Downing Street
It prevents their children from having up to hundreds of seizures each day
Last updated 2nd Nov 2021
Three years after medicinal cannabis was legalised in the UK, two mum's are telling us they still having to spend thousands of pounds a month to keep their sons alive.
Today, Joanne Griffiths and Rachel Rankmore are heading from Merseyside to Downing Street, leading a protest calling for change.
Their children suffer with epilepsy are traveling to Downing Street to demand a change in legal cannabis prescriptions.
Joanne Griffiths' son Ben has a rare form of epilepsy which caused him to suffer hundreds of seizures a day, before medicinal cannabis oil began to help.
Ben's mother, Joanna, said: "It's beyond cruel that we're being denied this access. We need help with that. We've fought and we've battled for three long years now and we're just not getting anywhere. People need to come together within the departments to make sure something does happen.
"We've seen parents selling their homes. It's heart-breaking what's happening. It's just so unfair when there are three other children, and two of them on the very same medication that my son has, but he can't have access. Yet they have a clinical decision from a doctor to say 'here's a prescription', it's just that we have to pay for it."
"ÂŁ2000 every month just to keep their child alive"
In 2018, the UK Government approved the use of cannabis for medicinal purposes and made it available on the NHS.
Since then, only three NHS prescriptions have been passed, with those issued a private prescription having to pay around ÂŁ1200 per month.
They'll be asking why an NHS prescription for cannabis oil still can't be obtained, despite it being legalised 3 years ago.
The families are calling on the Government to make sure changes are made.
The mother said: "We have a clinical decision, we just need the funding. We're begging you to step up and really help us now before one of the children gets seriously ill because a parent can't afford to pay up to nearly ÂŁ2000 every month just to keep their child alive.
"It's been a really hard three years. We've had to go abroad ourselves and collect the medication from the Netherlands because the prices are so high here. It's just madness. It needs a change, it needs a policy putting in place to enable the ones that are already taking it to have access to it."
Fundraising to ensure "a better quality of life"
Rachel Rankmore's son Bailey suffers from the same type of epilepsy as Ben Griffiths.
Ms Rankmore will be among a group of campaigners in London today, demanding to speak with MPs over the failure of the policy.
"We still can’t obtain NHS prescriptions because there are still blocks. We’re just asking for funding until it is available on the NHS and those blocks are actually taken away", Rachel said.
Bailey's family have even had to resort to fundraising to help cover the costs of his privately-issued medicine, which Rachel says he needs as it gives him "a better quality of life."
"It can be anything up to 2,000 pounds depending on the dose and which oil that he needs", she went on to say.
"At the moment it’s around £1200 pounds a month, which is still really hard to find when Craig is working full time; I'm a full time carer to Bailey, it’s just not sustainable."
Rachel is not the only one who is voicing concerns over the difficulty to obtain a legal cannabis prescription for her child, with many other parents taking to social media.
A campaign group on Twitter called End Our Pain is similarly calling for change in regards to making cannabis prescriptions more accessible.
The group regularly retweets cases of children suffering with epilepsy that are unable to access medicinal cannabis, calling on Secretary of Health and Social Care Sajid Javid to intervene.
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