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News UK Home News Change cannabis law before my epileptic daughter dies, father urges Sajid Javid Robin Emerson says GPs must be given powers to prescribe medical cannabis
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Robin Emerson, whose daughter Jorja has severe epilepsy, is calling for the law to be changed to allow GPs to prescribe medical cannabis to UK patients (Robin Emerson) Your support helps us to tell the story From reproductive rights to climate change to Big Tech, The Independent is on the ground when the story is developing. Whether it's investigating the financials of Elon Musk's pro-Trump PAC or producing our latest documentary, 'The A Word', which shines a light on the American women fighting for reproductive rights, we know how important it is to parse out the facts from the messaging.
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Your support makes all the difference. Read more 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 wasnāt quite right with the youngster, who hadnāt been developing as a typical baby should.
Jorja, now five, was subsequently diagnosed with a chromosome disorder which causes a severe form of epilepsy .
At its worst, the condition can cause Jorja to suffer more than 30 seizures a day. She was admitted to intensive care twice ā and at one point her parents were told she was terminally ill.
Her parents tried every treatment possible but nothing seemed to work. Thatās when they heard about the positive effects of medical cannabis on a child with a similar condition ā but soon faced another hurdle as the treatment wasnāt 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, Jorjaās parents were given hope for the first time as their toddler became the first child believed to be prescribed medical cannabis in the UK.
āIt took about five and a half weeks for us to see an improvement ā but once we hit that mark things definitely got better and better to where we are three years later,ā her father Robin Emerson told The Independent . āSince then Jorja has been thriving.
āShe is seizure-free, she is a smiley, happy child ā itās completely transformed our life.ā
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Robin Emerson, whose five-year-old daughter Jorja has severe epilepsy, is calling for the law to be changed to allow GPs to prescribe medical cannabis to UK patients (Robin Emerson) 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.
āShe was just sedated to the point where she couldnāt lift her head off the pillow and her eyes were vacant,ā her father said.
āWhen she first took medical cannabis, it was like a light bulb being switched on; her eyes were open, she was alert.ā
Things were beginning to look up for the family ā 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 Jorjaās parents have been unable to find anyone else willing to do so since Dr Adelaida Martinez, a paediatric neurologist at Londonās 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 Ā£2,000 a month to keep their child alive ā and one even selling their house to afford the treatment.
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Robin Emerson, whose daughter Jorja (pictured) has severe epilepsy, is calling for the law to be changed to allow GPs to prescribe medical cannabis to UK patients (Robin Emerson) The father is now calling for GPs to be given powers to prescribe the medicine.
He accused Mr Javid and the prime minister of ādismissingā his daughterās 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 Jorjaās 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.
āWe are in a situation where itās getting urgent, where we really need Sajid Javid to step in,ā he said. āIām asking him father to father: what would he do for his child?ā
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.
āThis is exactly the same process as already exists for any other type of unlicensed controlled drug,ā she said.
The British Paediatric Neurology Association (BPNA) said in a statement: āWe 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.
āDoctors must weigh up the available evidence for medicines they prescribe and carefully consider the possible benefits as well as safety.
āThe 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.ā
The Independent has contacted the Department of Health for comment.
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