Billy, 13, suffers from a severe, life-threatening form of epilepsy which can be treated efficiently using cannabis oil. After having his medicine confiscated at the Heathrow Airport in June 2018, Billy was granted an emergency exemption license by Home Secretary Sajid Javid. He was provided this medicine by the NHS from July onwards.
Mr. Javid then ordered a review into the law, which resulted in medical cannabis to become legal in the UK in November. However, 7 months later only a very small number of patients have access to the NHS due to strict guidelines from the British Paediatric Neurology Association (BPNA), forcing those people who are able to turn to exorbitant private clinics.
Billy himself with whom the law had started now struggles to access the right medicine. Billyâ€™s mother Charlotte said her real fear is that her little boy will end up in a life-threatening situation if his supply runs out. She explained how petrified she is for Billy and how their life is again going into a huge turmoil.
â€śMy heart has broken into a million pieces,â€ť said Charlotte.
In October last year, depite getting treated with a medical cannabis product, Billyâ€™s seizures started breaking through. Charlotte decided to take him back to Canada to be reassessed by medical cannabis experts who could help them understand the nature of the seizures and the reason for their comeback.
To their disappointment, the experts in Canada told Charlotte that because Billy was entering into his puberty, his body was evolving and so was his condition. His medicines needed to be adapted by his body which might take some time. Billy was also transitioned onto a new medication and all the updated information was sent back to Belfast.
However, the new cannabis product Charlotte was requesting for her son is still unlicensed in the UK and so the Belfast Health and Social Care Trust were unable to provide it.A spokesperson for the Belfast Trust told Express.co.uk that as per the Department of Health, medical cannabis was approved in Billyâ€™s case last year and provided to him by the health service. But, the alternative unlicensed cannabis-based product was sourced on a private basis by Ms Caldwell.
He further explained that the Trust remains committed to ensuring the appropriate care for Billy. The discussions remain ongoing for his treatment. He added that the NHS will continue to provide Billy with the medical cannabis product that was previously prescribed to him. However, Charlotte argued that the old medication is no longer controlling Billyâ€™s seizures and the once they start breaking through, his seizures increase rapidly.
Charlotte felt helpless and said that she had no other choice than to seek an alternative medication. She told the Express.co.uk that she has literally lost count of how many NHS paediatric neurologists and private paediatric neurologists she has emailed to support Billyâ€™s newly prescribed cannabis medicine so they could go home.
Despite her strenuous efforts, she could only get one private doctor onboard who supported her. The duo returned to the UK in February and Billy has been receiving his medicine on a private prescription from a doctor in England. The family is paying a hefty amount for their sonâ€™s medicine, private consultation fees as well as the return flights from Northern Ireland to England every five weeks.
Two weeks ago, Charlotte and Billy were thrown a lifeline when a medical cannabis manufacturer known as Aurora offered to gift Billy his private prescription at a medical cannabis conference in London labelled as the â€śWomen, CBD and Medical Cannabis Conferenceâ€ť.
However, the company then said that they are not in a position to provide the prescription free of cost, due to high number of families and patients now requesting the same. They will provide the prescription up to June 4, but after this the family will have to pay for the private prescriptions by themselves. Charlotte is pushing all her strength in requesting the NHS for their support.
She said that it is a real injustice and the question to ask was if this was just a shambles or is it orchestrated cruelty against her little boy, Billy. Many people like Billy have been suffering from severe epileptic fits since years and the government, privately owned agencies and even support groups tend to hold their hands back when it comes to marijuana. Though cannabis has been legalized in the U.S., the Food and Drug Administration is yet to legalize CBD in edible products.