19.04.2024

Change cannabis law before my epileptic daughter dies

Jorja, now five, was subsequently diagnosed with a chromosome disorder which causes a severe form of epilepsy. When Jorja Emerson was born in February 2016, she seemed just like any other new baby.

But as the months went by, her parents began to realise something wasn’t quite right with the youngster, who hadn’t been developing as a typical baby should.

At its worst, the condition can cause Jorja to suffer more than 30 seizures a day. She was admitted to intensive care twice – and at one point her parents were told she was terminally ill.

Her parents tried every treatment possible but nothing seemed to work. That’s when they heard about the positive effects of medical cannabis on a child with a similar condition – but soon faced another hurdle as the treatment wasn’t available in the UK.

Fortunately then home secretary Sajid Javid stepped in and in October 2018 doctors were given the green light to prescribe the treatment, which is legal but unlicensed, in the UK.

In December 2018, Jorja’s parents were given hope for the first time as their toddler became the first child believed to be prescribed medical cannabis in the UK.

“It took about five and a half weeks for us to see an improvement – but once we hit that mark things definitely got better and better to where we are three years later,” her father Robin Emerson told The Independent. “Since then Jorja has been thriving.

“She is seizure-free, she is a smiley, happy child – it’s completely transformed our life.”

Before taking the medicine, Jorja, from Belfast, was unable sit up or roll over on her own but just a couple of months ago she took her first assisted steps on a treadmill.

“She was just sedated to the point where she couldn’t lift her head off the pillow and her eyes were vacant,” her father said.

“When she first took medical cannabis, it was like a light bulb being switched on; her eyes were open, she was alert.”

Things were beginning to look up for the family – but they were dealt another blow last month when the specialist who had agreed to prescribe the medicine, made by a Canadian company, to a small group of children, including Jorja, retired.

In the UK, only specialist medical practitioners are allowed to prescribe medical cannabis in the first instance and Jorja’s parents have been unable to find anyone else willing to do so since Dr Adelaida Martinez, a paediatric neurologist at London’s Portland Hospital, retired.

Mr Emerson said only three children in the UK have secured NHS prescriptions for the medicine and about a dozen families have been left in the same situation as his with many paying upwards of £2,000 a month to keep their child alive – and one even selling their house to afford the treatment.

The father is now calling for GPs to be given powers to prescribe the medicine.

He accused Mr Javid and the prime minister of “dismissing” his daughter’s life after letters he wrote urging them to meet with him in person to discuss the situation went unanswered.

Mr Emerson estimated he had a deadline of about two to three weeks to send off Jorja’s next prescription in order to get the medicine back from Canada in time.

His worst fear is that his daughter will end up back in intensive care and eventually dead.

“We are in a situation where it’s getting urgent, where we really need Sajid Javid to step in,” he said. “I’m asking him father to father: what would he do for his child?”

Dr Martinez also said children with epilepsy controlled by cannabis-based product for medicinal use (CBPM) medication should be able to have prescriptions fulfilled by their GPs under shared care protocols.

“This is exactly the same process as already exists for any other type of unlicensed controlled drug,” she said.

The British Paediatric Neurology Association (BPNA) said in a statement: “We have every sympathy for parents in this position. However doctors also have a duty with regard to the safety of their patients and are reluctant to prescribe any medicine that has not undergone appropriate testing of safety and efficacy.

“Doctors must weigh up the available evidence for medicines they prescribe and carefully consider the possible benefits as well as safety.

“The BPNA is committed to enabling clinical trials of these medicines for treating childhood epilepsy. The BPNA recommends paediatric neurologists prescribe products that have been approved by the European Medicines Agency and/or UK medicines regulator, MHRA. Currently only one cannabis based medicine meets these requirements.”

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