08 November 2023 , 20:17
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Desperate families fighting for NHS medical cannabis prescriptions for their loved-ones marched to Downing Street today to call for “urgent action on this crisis”.
Parents from campaign group End Our Pain delivered a letter that was also signed by MPs and medical researchers to the Prime Minister, demanding funding for the “life-saving” drug. Dozens gathered to question why only a handful of NHS prescriptions have been granted, five years after medical cannabis was legalised in the UK.
End Our Pain Director Joanne Griffiths - who spends £1,900 a month on the drug for epileptic son Ben, 14, told the Mirror: “Only two cannabis prescribers in the UK provide for children and their books are full. If one of those shuts down, many children will lose access to their vital drugs.
“We urgently need action to secure safe and continued access, and reimbursement for the costs so families aren’t forced into financial hardship or toward the black market for their child’s health.”
Ayisha Hussain with son Musa among people seeking funding for NHS medical cannabis prescriptions (Amy Sharpe / Daily Mirror)Luci Griffin, 47, spends £300-a-month on medical cannabis for epileptic son Alfie and described the current situation as “disgraceful.” The mum, also Alfie’s full-time carer, said: “My child and everyone else’s children here deserve to have their lives back. It is shocking that it comes down to what you can afford. Medical cannabis is the only thing we have found that helps Alfie. He has less seizures now, and he is brighter.”
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She said Alfie needs a stronger prescription that could cost up to £2,000 a month and fears she and husband Adam, 53, will be forced to sell their home in Peterborough to pay for it. Another mother, Karen Gray, 49, told how her 11-year-old son Murray, who has epilepsy condition Doose Syndrome, is seizure-free thanks to his £1,200-a-month prescription.
Karen, from Edinburgh, has previously risked arrest by travelling to the Netherlands to get him the medication, and says she would not rule out doing the same again if she had to. Among signatories was Ronnie Cowan, an SNP MP who is also a trustee of Intractable Epilepsy charity which supports families paying for medical cannabis.
He told the Mirror: “Five years ago Matt Hancock said this medicine will be available and we thought it was a major breakthrough. That’s something that hasn’t panned out. It frustrates politicians like myself but at the end of the day this is about the pain and suffering, day in, day out, of kids who have these conditions that we know we can help with the medication. Why should they have to pay for this?”
Others at the event claimed police are arresting patients found in possession of legally-prescribed medicinal cannabis - and confiscating the vital drugs. Alex Fraser, of private pharmacy Grow Pharma, said that “between 20 and 30” of his patients had contacted him after such incidents, with many “left traumatised.”
In each case, the medication was clearly marked with the pharmacy’s address and contact details and the name of the prescriber, he said - yet they were seized. Mr Fraser, a patient access lead at the pharmacy, explained: “Some of them have been thrown in a cell for a night, sometimes the weekend. There’s a few who have even been charged and now have a court case hanging over them.
“Some police officers are ignorant of the legal status of their medication. They hear ‘cannabis’ and they treat it like an illicit substance.” A Department of Health and Social Care spokesperson said: “Licensed cannabis-based medicines are routinely funded by the NHS where there is clear evidence of their quality, safety and effectiveness.
“We are taking an evidence-based approach to unlicensed cannabis based treatments to ensure they are proved safe and effective before they can be considered for roll out on the NHS more widely.” The National Council of Police Chiefs was also contacted for a comment.
And a mum who helped change the law to allow the use of medical cannabis in the UK is “disheartened”at the fight families face for funded prescriptions. Charlotte Caldwell’s severely epileptic son Billy was told he was allowed the drug in 2018 following a high-profile campaign, and was granted NHS access two years later.
Thanks to the drug, Billy, who turned 18 this summer, now attends his special needs school, horse rides and loves going to the beach - all things that were once “impossible” for him. Speaking exclusively to the Mirror, Charlotte, 53 said: “He is no longer merely surviving, Billy is truly thriving. I always knew there was another little boy inside Billy fighting to get out.
“To see him like this - thriving and loving his life [...] I couldn’t ask for more.” Charlotte, of Castlederg in co.Tyrone, now campaigns on behalf of hundreds who are fighting for funded medical cannabis prescriptions through her foundation I Am Billy.
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She said: “We know we’re in the middle of the cost-of-living crisis and a number of patients I support are choosing whether to buy food or buy their medicine from the private sector. For me it’s disheartening to see that vulnerable and chronically-ill patients are now burdened with monthly costs in the hundreds of pounds.”