The father of an epileptic girl prescribed medicinal cannabis must pay ¬£1,000 a month privately.
The girl, two, who has been prescribed medicinal cannabis still can‚Äôt get it on the NHS ‚Äď leaving her father paying ¬£1,000 a month for a private supply
Jorja Emerson used to be a happy, giggling baby. But a 17-hour seizure left the little girl unable to smile.
He was relieved when she became the first child to be prescribed it last November when the law changed following a lengthy battle by him and other parents of children in the same boat.
But the 31-year-old,¬†from Dundonald in¬†County Down, Northern Ireland, still can‚Äôt get it in his own country and has¬†had to fly to England himself to collect a private supply which costs ¬£1,000 a month.
The NHS is failing my child and could kill her
He accused the Government of putting children‚Äôs lives at risk and has called on the Health Secretary to ‚Äúsort this mess out‚ÄĚ.
‚ÄúJorja is not only at risk of dying from her fits, but suffering further brain damage and going backwards in her development,‚ÄĚ he told i.
‚ÄúThe NHS is failing my child and could kill her.‚ÄĚ
Medical cannabis was legalised on 1 November last year and is intended to be available through specialist NHS doctors.
The move comes after¬†after the high-profile cases of children with severe forms of epilepsy, including Alfie Dingley and Billy Caldwell, whose conditions appeared to be helped by cannabis oil containing THC.
Jorja‚Äôs family were told they could be prescribed it to help Jorja, whose epileptic seizures are caused by rare¬†chromosome¬†deletion.
But then they were told they faced weeks of delays because of a supply problem with the hospital pharmacy they used.
It is not known whether the issue ‚Äď concerning agreements between the pharmacy and a Canadian manufacturer ‚Äď is still a problem.
Robin also says the doctor from a private hospital that made the prescription retracted it because he feared he may lose his job over it, before prescribing it again.
This week he has been able to finally obtain¬†a cannabis oil called Tilray, in London, but says¬†he has been forced to borrow money from friends in order to fund the medication.
The Government has done the right thing in changing the law but it‚Äôs pointless if children can‚Äôt access it
‚ÄúIt‚Äôs not sustainable to carry on doing that,‚ÄĚ he said. ‚ÄúThe Government has done the right thing in changing the law but it‚Äôs pointless if children can‚Äôt access it and it‚Äôs not affordable.
‚ÄúMatt Hancock is the Health Secretary and it‚Äôs not acceptable to say his hands are tied. He is in charge of the NHS and he‚Äôs not stepping up.‚Äô
Robin explained that Jorja has only just recovered from a 17-hour seizure she had in July 2017.
‚ÄúShe was on life support and the doctors in Belfast told us to prepare to take her home to die,‚ÄĚ he said. ‚ÄúShe pulled through but she was no longer the happy, giggling baby she was.
‚ÄúShe didn‚Äôt smile for a year after that and she‚Äôs only just started giggling again. We‚Äôve had to teach her to roll over again. It‚Äôs sent her development way back.
If the seizures don‚Äôt kill her the cocktail of medications she is on will
‚ÄúWe‚Äôve been warned that if the seizures don‚Äôt kill her the cocktail of medications she is on will. They are likely to lead to liver and kidney damage.‚ÄĚ
As well as sorting out the supply issues, he feels that doctors need better educating about medicinal cannabis.
‚ÄúThey‚Äôre scared that they‚Äôre going to be struck off for prescribing it which is something that needs to be urgently addressed. It‚Äôs now legal yet they are afraid.
‚ÄúThe word cannabis scares them. Yet the research carried out on cannabis harming the brain are high strength manufactured cannabis such as skunk.‚ÄĚ
Robin has accused the Government of forcing parents to resort to using unregulated products in a bid to help their children.
‚ÄúThere are off-shelf CBD oils out there but these children need proper, licenced medicine so we know what we are giving to them.
‚ÄúIt‚Äôs clear to me from other cases that THC is the magic ingredient for children with uncontrolled epilepsy.
‚ÄúEpidiolexis [a¬†purified form of CBD which contains almost no THC] doesn‚Äôt work for every child.
‚ÄúIt‚Äôs making parents have no choice but to go on the black market too and it‚Äôs putting money into the pockets of drug dealers.‚ÄĚ
It‚Äôs madness that children with Jorga‚Äôs condition in other countries are thriving and my daughter isn‚Äôt because she lives in the UK and we are lagging so behind
Robin has today given his daughter her first dose of Tilray, which is given twice a day in the form of drops on the tongue.
‚ÄúIt‚Äôs too early to say yet if it‚Äôs having an effect as we will be giving her microdoses and building the doses up over the next six weeks.
‚ÄúBut I worry about how we can carry on with it. It‚Äôs madness that children with Jorga‚Äôs condition in other countries such as the US and Canada can access medicinal cannabis and are thriving and my daughter isn‚Äôt because she lives in the UK and we are lagging so behind.‚ÄĚ
The Department of Health said it could not comment on individual cases. NHS England has been approached for comment.