THE MOTHER of epilepsy sufferer Alfie Dingley has launched a petition after new restrictive guidelines mean he is unable to get his life-saving cannabis treatment.
After a long and widely publicised battle, Alfie’s was a landmark case which prompted the legalisation of the use of cannabis to treat epilepsy in the UK.
But a change in the law on November 1 making cannabis treatment legal in Britain has actually made it more difficult for Alfie to get his medication.
Without the medication the seven-year-old from Kenilworth can suffer up to 30 seizures a day due to a rare form of epilepsy affecting just nine children in the world. It causes catastrophic clusters of seizures which are unresponsive to anti-epilepsy drugs.
His family travelled to Holland where the cannabis treatment was already legal and said his condition improved ‘drastically’.
But after funds started to dwindle, the family was forced to return home to Kenilworth after which Hannah campaigned tirelessly to access the drugs for her son.
Home secretary Sajid Javid finally approved the medication for Alfie in June.
Another high-profile case involving epileptic youngster Billy Caldwell fuelled the debate and the UK government finally announced medical cannabis would be legal from November 1.
But the change in the law saw Alfie’s previous licence revoked and he must rely on specialist doctors for his prescription – but they are proving unwilling to prescribe the medication.
Hannah’s petition against the refusal of prescriptions for medical cannabis has gained nearly 363,000 since it was launched just a week ago.
She is also fighting for families suffering the same heartache including nine-year-old Teagan Appleby who is in intensive care due to her epilepsy, and who has been denied the cannabis treatment.
She said: “Guidance issued by the British Paediatric Neurology Association (BPNA) prevents all its members from prescribing for children like Alfie and Teagan, so no doctor that we know of will prescribe without fear for their careers.
“Alfie has three weeks of his medicine left. My son is well and seizure free and he must not be allowed to become unwell.”
Doctors will not prescribe the drugs because guidance from the Royal College of Physicians, alongside the BPNA, says there is no strong evidence cannabis can help with chronic pain.
A spokesman for the Royal College of Physicians said: “The public would expect us to only make recommendations based on quality evidence and at the moment there isn’t any. We would welcome high-quality studies into the use of cannabis-based medicinal products for pain treatment.”
He added some 100 observational studies showed ‘statistically, the risk of harm was greater than the potential benefit’.