25,000 sick kids still denied cannabis‘cure’
» Epileptics missing out despite change to the law » Furious families march on No10 to demand action
Louis Petit during one spell in hospital when he was 13
A MUM was forced to give up her job and move from London to Holland with her son so he could access medicinal cannabis to stop the seizures which were threatening his life.
Louis Petit, 15, was bed-ridden and unable to talk properly because of his violent seizures.
He and his mother Emma Matthews have been living for four months in Rotterdam, where cannabis oil can be prescribed legally.
Emma, 57, said: “His life has been destroyed for the past few years. We have a very sick child and couldn’t wait years for this to happen in the UK because his life could be over by then.”
Louis was having a dozen attacks, one after another. He would spend days in hospital being given powerful anti-epileptic drugs, which left him unable to speak or remember his words. Emma, a TV film editor before moving to Holland, said: “The side-effects were so severe. Last term he only got to school for seven days and he was bedridden, unable to do anything other than watch films. He couldn’t remember anything for more than three minutes.
“Thanks to the medicinal cannabis his language is normal. He’s back at school and about to take GCSEs.
“Medicinal cannabis is letting him live a normal life.”
ACTION Mum Emma moved to Holland to save Louis AROUND 25,000 children with epilepsy are being denied medical cannabis to stop seizures, despite a law change four months ago.
Campaigners say that not a single child has been prescribed the drug on the NHS since the reform triggered by the case of Alfie Dingley, seven.
He had up to 500 life-threatening seizures a month before he began treatment with cannabis oil.
His mother, Hannah Deacon, said: “We believe his NHS prescription is still the only one given in the UK.”
The End Our Pain Campaign, comprised of families of children deprived the drug, will go to Parliament tomorrow to protest as MPs quiz chief medical officer Dame Sally Davies on the issue.
Hannah said: “Families were given hope. Now they are in despair. Their children are suffering horrendously and medical cannabis could help them, like it has helped Alfie.”
He was the first child to receive medicinal cannabis under a unique application before the law changed on November 1. Epilepsy Action data estimates there are now 25,398 children suffering life-threatening seizures for whom no other drugs work. GPs cannot prescribe medicinal cannabis and must refer patients to specialists, who are likely to be in the British Paediatric Neurology Association, which claims that cannabis has no medicinal benefit.
The BPNA did not respond to a request for a comment. End Our Pain campaigner Peter Carroll said: “The Health Secretary has implemented the policy in a way that means patients are being denied access.” Simon Wigglesworth, of Epilepsy Action, said: “The guidance is too restrictive.” Neurologist Prof Mike Barnes said: “This is a disgrace. We must educate our doctors in cannabis medicine so they feel able to prescribe where the case allows.” CAMPAIGN Alfie in 2018 protest at No10
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