Two-year-old Jorja Emerson, who suffers with more than 30 epileptic seizures a day, has become the first child in the UK to be prescribed medical cannabis since the 1 November law change.
However, like Carly Barton, the first adult to get a prescription, the Emerson family has had to turn to a private doctor, a neurologist at the Portland Hospital in London. That means paying out £3,000 for a three month supply and having to fly to London from Belfast for every repeat prescription.
NHS specialists have been issued strict guidelines which Barton described as “prohibition by another name”.
Jorja’s father Robin Emerson said: “We have been fighting for over a year, so today has been a momentous day. Now Jorja has hope.
“The NHS turned its back on us. But I knew when I first met this particular doctor, and she was finally telling me the same as doctors abroad, that Jorja is going to survive.”
The Emerson family has previously consulted doctors in the US and Australia who recommended cannabis oil.
Robin said: “Jorja has had every drug going – but nothing is working. She is on six different medications and still has more than 30 epileptic seizures a day, any one of which could kill her. She is sick every night. I have done research after research, and I have seen the effects in other countries where cannabis is legal and how well it works.”
Yesterday he took his daughter’s prescription straight to the hospital’s pharmacy to start the two-week process of having the cannabidiol (CBD) drug imported from Canada.
“It’s a lot of money, but it’s a choice between my daughter staying alive and dying,” said Robin.
“It will take a while to kick in, but after a few days we will hopefully see a drop in the seizures, and then we will gradually wean her off the other medication. I’m hoping that in about six weeks, she will be off all the other medication and not be having seizures.”
Portland Hospital said: “Consultants can prescribe medication that is clinically appropriate for their patients’ care. Our pharmacy department is working with the Home Office and national licensing departments to ensure we are able to follow the correct regulatory processes for the safe supply of medicinal cannabis.”