Epileptic girl, 2, who has been prescribed medicinal cannabis still can’t get it on the NHS – leaving her father paying £1,000 a month for a private supply – iNews

In brief

  • Jorga Emerson nearly died after a 17-hour seizure
  • She was first child to be prescribed cannabis on NHS after law change
  • However, family faced supply problems and are paying for it privately

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’t get it on the NHS – 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.

After trying her on six anti-epileptic medicines at once, which failed to get her 30 fits a day under control, medicinal cannabis is her only hope, says her father Robin.

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’t 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.

Jorga's epileptic seizures are caused by rare chromosome deletion (Photo: Robin Emerson)
Jorga’s epileptic seizures are caused by rare chromosome deletion (Photo: Robin Emerson)

The NHS is failing my child and could kill her

Robin Emerson

He accused the Government of putting children’s lives at risk and has called on the Health Secretary to “sort this mess out”.

“Jorja is not only at risk of dying from her fits, but suffering further brain damage and going backwards in her development,” he told i.

“The NHS is failing my child and could kill her.”

Unaffordable cost

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’s family were told they could be prescribed it to help Jorja, whose epileptic seizures are caused by rare chromosome deletion.

The 31-year-old has called the situation in the UK 'madness' (Photo: Robin Emerson)
The 31-year-old has called the situation in the UK ‘madness’ (Photo: Robin Emerson)

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 – concerning agreements between the pharmacy and a Canadian manufacturer – 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’s pointless if children can’t access it

Robin Emerson

“It’s not sustainable to carry on doing that,” he said. “The Government has done the right thing in changing the law but it’s pointless if children can’t access it and it’s not affordable.

“Matt Hancock is the Health Secretary and it’s not acceptable to say his hands are tied. He is in charge of the NHS and he’s not stepping up.’

Read more: Mother fears son, 9, will die after hospital blocks its own consultant from prescribing him medicinal cannabis despite his 300 seizures a day

Doctors are scared

Robin explained that Jorja has only just recovered from a 17-hour seizure she had in July 2017.

“She was on life support and the doctors in Belfast told us to prepare to take her home to die,” he said. “She pulled through but she was no longer the happy, giggling baby she was.

“She didn’t smile for a year after that and she’s only just started giggling again. We’ve had to teach her to roll over again. It’s sent her development way back.

The Northern Ireland father fears his daughter may die without her cannabis prescription (Photo: Robin Emerson)
The Northern Ireland father fears his daughter may die without her cannabis prescription (Photo: Robin Emerson)

If the seizures don’t kill her the cocktail of medications she is on will

Robin Emerson

“We’ve been warned that if the seizures don’t kill her the cocktail of medications she is on will. They are likely to lead to liver and kidney damage.”

As well as sorting out the supply issues, he feels that doctors need better educating about medicinal cannabis.

“They’re scared that they’re going to be struck off for prescribing it which is something that needs to be urgently addressed. It’s now legal yet they are afraid.

“The word cannabis scares them. Yet the research carried out on cannabis harming the brain are high strength manufactured cannabis such as skunk.”

‘The UK is lagging behind’

Robin has accused the Government of forcing parents to resort to using unregulated products in a bid to help their children.

“There are off-shelf CBD oils out there but these children need proper, licenced medicine so we know what we are giving to them.

“It’s clear to me from other cases that THC is the magic ingredient for children with uncontrolled epilepsy.

“Epidiolexis [a purified form of CBD which contains almost no THC] doesn’t work for every child.

“It’s making parents have no choice but to go on the black market too and it’s putting money into the pockets of drug dealers.”

He is calling on the Health Secretary to take action (Photo: Robin Emerson)
He is calling on the Health Secretary to take action (Photo: Robin Emerson)

It’s madness that children with Jorga’s condition in other countries are thriving and my daughter isn’t because she lives in the UK and we are lagging so behind

Robin Emerson

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.

“It’s too early to say yet if it’s having an effect as we will be giving her microdoses and building the doses up over the next six weeks.

“But I worry about how we can carry on with it. It’s madness that children with Jorga’s condition in other countries such as the US and Canada can access medicinal cannabis and are thriving and my daughter isn’t because she lives in the UK and we are lagging so behind.”

The Department of Health said it could not comment on individual cases. NHS England has been approached for comment.

Source: https://inews.co.uk/news/real-life/epileptic-girl-two-prescribed-medicinal-cannabis-cant-get-treatment-nhs/

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