A Northern Ireland GP has been warned by the Home Office in London to stop writing medicinal cannabis prescriptions for a child with severe epilepsy.
Billy Caldwell received the UK’s first prescription for medical cannabis in April 2017.
Since then he had had a second one and had three weeks supply of his oil left.
Now his mum Charlotte has been told he can have no more prescriptions which she says have helped keep him alive and well.
Charlotte said: “I want to know who exactly has signed my son’s death warrant. Billy was sent home from hospital as a baby to die.
“I couldn’t let that happen while there was a way to let him live and live well. I fought for treatment and care and got it for him in the US.
“He is happy and healthy and living life to the full.
“Billy has been taking two drops of medicinal cannabis twice a day for 18 months and has had no seizures.
“This oil is literally a life saver. It is HTCa and has no psychoactive components.
“But now our GP has been issued with a warning and told he can prescribe no more prescriptions for Billy.
“He received a letter from the Home Office telling him clearly he can not write any more prescriptions.
“Without the oil Billy will suffer seizures and with intractable epilepsy, each one can prove fatal.
“We have enough oil to last an other three weeks but after that my son’s life, his physical safety, his health, will be on a knife edge.
“Somewhere a civil servant has agreed or made a decision with a deadly knock-on effect.
“I want to know who did this and why. I have fought for 11 years to help my child live. I’m not going to stop now despite the faceless, spineless actions of some remote civil servant.”
Charlotte received the email from her GP on May 15 to tell her he had been contacted by letter from a civil servant at the Home Office in London.
The GP wrote his first medicinal cannabis prescription for Billy on April 19, 2017, a move which was widely welcomed across the UK and Ireland as ground breaking.
It was the first NHS prescription of its type in the UK.
He wrote an other six months later and Charlotte has taken Billy’s medicine on every trip they make, including to meetings at the House of Commons.
She said: “Where Billy goes, his oil goes too and we have travelled extensively across the UK and even on a number of occasions into the House of Commons for meetings. The oil has been in my handbag and it has never been confiscated, queried or even examined.”
Belfast Live understands the Co Tyrone GP was also ordered to attend a formal meeting in Belfast to discuss the prescriptions.
A source said: “This family practitioner was required to attend a meeting with officials from the Department of Health’s drug enforcement unit. The details of the meeting were minutes and will remain a confidential matter.”
Charlotte said: “I am frightened and angry that these people have acted in this way. They are putting my son’s life at risk. This has made matters very difficult and unpleasant for a well respected, experienced and hugely sensible GP who has only ever had his patients’ best interests at heart.
“My concern is that he could have been threatened to have his medical licence suspended or even removed.
“He has done nothing wrong.. but someone has. Whoever came up with the idea, whoever signed off the decision, whoever supported them.. they have done something wrong.
“Someone has signed off on my son‘s death warrant and I want to know who it is. And then I will have one question for them- why?”
THCA is tetrahydrocannabinolic acid. It is a non-psychoactive cannabinoid that turns into psychoactive THC when exposed to sufficient heat.
It is used in epilepsy for its anticonvulsant properties and also used to treat chronic pain.
A Home Office spokesperson said: “This is a devolved matter. In Northern Ireland it is a matter for the Department of Health Northern Ireland to determine and consider any controlled drug licensing applications from companies and individuals.
“The Home Office recognises that people with chronic pain and debilitating illnesses are looking to alleviate their symptoms. However, it is important that medicines are thoroughly tested to ensure they meet rigorous standards before being placed on the market, so that doctors and patients are assured of their efficacy, quality and safety.”