SEVERE epileptic Alfie Dingley will get cannabis medication despite being initially refused the newly-legalised treatment.
The family’s long fight prompted the legalisation of the use of cannabis to treat epilepsy in the UK, which came into effect on November 1.
But the law change saw the Kenilworth youngster’s previous licence revoked and new restrictive guidelines meant doctors were unwilling to prescribe the medication.
Alfie’s supply has now been secured though after medicinal cannabis expert Professor Mike Barnes intervened.
The seven-year-old has a rare form of epilepsy which affects just nine children in the world. It can cause up to 30 seizures a day or ‘catastrophic clusters of seizures’ which are unresponsive to anti-epilepsy drugs.
Earlier this year the family had travelled to Holland, where cannabis treatment was already legal, and they saw an instant improvement in his condition.
But after funds started to dwindle, they were 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 doctors will not prescribe the drugs because guidance from the Royal College of Physicians says there is no strong evidence cannabis can help with chronic pain.
Hannah has vowed to fight for families who are denied the medication despite it now being legal.
Following her long battle for Alfie’s licence, she was invited to join an the all-party group of MPs to encourage the legalisation of medicinal cannabis. She also created the pressure group known as ‘End our Pain’.
She said: “Alfie is now safe after a couple of weeks of us being very worried. But I am very mindful of the fact this doesn’t change anything for anyone else. I get to enjoy my son who is very well but the 17 families I help and many others are still suffering.
“Everyone I have spoken to says they have been told no and it breaks my heart to know this medication could help children who are seizing every day.
“It’s not good enough, I won’t accept it and we will not allow this to happen. We fight back and carry on, I assure you ‘End our Pain’ is working hard to make our voices heard I won’t stop doing what I’m doing until that happens.
“We will fight on.”
Hannah has launched a petition against the refusal of prescriptions for medical cannabis which has gained nearly 363,000 since it was launched a week ago.
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’.
