31 October 2023 , 21:57
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Parents are being forced into financial hardship by having to fork out £1,900 a month on medical cannabis for their children.
Today, they call on the Government to improve access to funded cannabis oils, five years after they were legalised. Fewer than five NHS prescriptions for unlicensed medical cannabis were given between November 2018 and July 2022, say figures out in January. Just under 90,000 private prescriptions were issued in that time frame.
NHS doctors are reluctant to prescribe the products due to a lack of evidence on their effectiveness on conditions such as epilepsy. Mum-of-six Joanne Griffiths, 48, director of the campaign group End Our Pain, said: “The Government is putting families into financial hardship or forcing them to turn to the black market for their child’s health.
Joanne Griffiths with her son Ben“Medical cannabis has succeeded where other drugs failed – it has given us our children back.” Medical cannabis was legalised after campaigns by Hannah Deacon and Charlotte Caldwell to secure drugs for their sons. End Our Pain will march to No10 next month to demand the safe supply of the treatments, and for the Tories to reimburse drug costs.
The Government said: “We urge patients struggling to obtain a prescription to con-tact their prescriber to discuss their care.” Ms Griffiths and husband Paul, 44, have raised funds and used savings to meet drug costs of £150,000 over years. Last week she travelled to the Netherlands to buy medical cannabis for her son Ben, 14, who has severe epilepsy and cerebral palsy, after being told the drug was out of stock. The mum-of-six, of Preston, Lancs, said: “It’s not legal – but I was more frightened someone would confiscate the medication and that my son would die than I was of being arrested.”
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'No10 didn't reply, I feel so let down'
Parents Ayisha and Atif Hussain said their pleas to the Government for a funded medical cannabis prescription for their eight-year-old son Musa went ignored. Ayisha wrote to the then-Health Secretary Sajid Javid in May 2022 to describe how Musa, who has cerebral palsy and severe epilepsy, had become seizure-free thanks to the drug.
She and Atif, 35, a private hire driver, who live in Walthamstow London, estimate they have spent a total of £21,000 on medical cannabis - leaving them unable to buy a house. Her letter urged Mr Javid to act on the “cruel, irrational” situation. It implored: “We have been told that more evidence is needed to ensure that medical cannabis is safe... Surely if it is safe to be prescribed privately, it is safe to be prescribed on the NHS?”
Speaking exclusively to the Mirror, Ayisha, 33, blasted: “I never got a reply - not even an acknowledgement. I feel so let down by the Government. These children are forgotten about.” Musa battled up to 200 life-threatening seizures a day despite trying a cocktail of pharmaceutical medications before starting a private cannabis oil prescription in 2020.
Since securing him a private cannabis oil prescription, his seizures have stopped. School lunchtime supervisor Ayisha, of Walthamstow London, said: “He’s a completely different child. He loves listening to music - especially anything with bells - and we take him out driving because he loves the car. Now, there is a personality there.”
'I may have to use black market too'
Mum-of-three Steph Mickelsen fears being forced to turn to the black market to source medical cannabis for her son, due to its “crippling” cost. The social worker pays £1,900 a month for the drug for son Rocco, 7 - and even then says he has been given out-of-date medication three times.
Steph, 36, said: “This is a private market where we have nowhere to turn. We have no choice but to spend two thousand pounds to, at times, give my child out of date meds. We pay our taxes. This shouldn’t be our issue to bear.” Three years ago Rocco, who has epilepsy condition Lennox-Gastaut Syndrome, was suffering four life-threatening seizures a day and had “no quality of life”.
Steph Mickelsen and son RoccoSteph and husband Jon, 41, of Woodbridge, Suffolk, despaired as pharmaceutical drugs failed to help before obtaining an £800-a-month cannabis prescription in 2021. Within weeks Rocco’s seizures dropped to just one a month. “It has not cured Rocco’s epilepsy but it has given him a better life,” Steph said. “He is riding a bike without stabilisers. He has friends, rather than being trapped in his isolated world.”
The cost has since jumped to £1,900 when Steph and Jon, who runs a plumbing business, had to change providers due to supply issues. That is now set to rise by £200 as Rocco needs a stronger dose. Steph - also mum to Rory, 15, and Sophia Rae, 4 - has “no idea” how the family will cope financially.
She said she “does not condemn” families who have turned to the black market for the drug, adding: “I can’t say I wont find myself in that position. I’m a social worker and I understand that if I were to do that I could put my son on a child protection register because it’s an illicit substance. What parent wouldn’t resort to the back market to save their child if hey had to? Or do we lose our family home that we’ve worked so hard for, that’s such a safe space for Rocco? It’s an impossible choice.”
'I should not be in this position five years after law-change'
Joanne Griffiths travelled to the Netherlands to buy medical cannabis for her teenage son last week after being told this month the drug was out of stock in the UK. The mum-of-six says she was left with “no option” but to go overseas - after a previous error with his £1,900-a-month UK prescription in May briefly left Ben without access to the drug.
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The 14-year-old, who has severe epilepsy and cerebral palsy, was blue-lighted to hospital with life-threatening seizures. Joanne, 48, said she was not questioned as she made the return journey from her home in Preston, Lancs., to Amsterdam, carrying a letter from Ben’s private prescriber.
“It’s not legal and I was scared - but I was more frightened that someone would confiscate the medication and that my son would die than I was of being arrested,” she said. “I should not be put in this position five years on from the law being changed.” Ben used to have 100 seizures a day before he obtained a prescription from a private neurologist in 2019.
Joanne, who runs a window-fitting business with husband Paul, 44, says they have fundraised and drawn on savings to meet the total cost of around £150,000 over the years. She said: “We are lucky that we can pay to get Ben the medication he needs - but it shouldn’t come down to what you can afford.”
'I'm so angry after lies by Hancock'
Four years ago former Health Secretary Matt Hancock promised Elaine Levy that “in several months time, [medical cannabis] will be, in the normal way, available on the NHS.” The mum was “hopeful” after the then-minister assured her as he met campaigners at the House of Commons in March 2019.
But she says the reality has been far from what Mr Hancock promised. She and Graham Levy estimate they have spent £150,000 on the drug for daughter Fallon, 29, since 2018, selling their family home to meet the £2,000-a-month cost. Even then supply issues recently forced them to risk arrest by obtaining the drug overseas.
Fallon Levy with parents Elaine and Graham (Daily Mirror)Elaine, 64, fumed: “Matt Hancock said he understood that me and other families did not have time to wait. I believed him - he was the Health Minister. But we’ve been sent around the houses. All the money that we get goes towards cannabis. Thousands of pounds - all our savings, our house, holidays. I’m so angry about being lied to.”
She and Graham, who are separated, travelled from Radlett, Herts., to the Netherlands last week with fellow campaigner Joanne Griffiths to pick up medication. Property sales consultant Graham, 64, insisted they did not fear arrest: “We’re not worried any more because we’re on the right side of the argument here.”
Fallon, who has Lennox-Gastaut Syndrome, once suffered 200 seizures a month and “could not walk 50 yards without keeling over”, he said. Since she began taking medical cannabis in 2018 Fallon has “got her life back” - seizures have dropped to 10 a month and she can go to the cinema and have conversations. They are set to make another Independent Funding Request for Fallon to be given a funded prescription after their first - which was backed by her NHS neurologist - was rejected.