Epileptic girl’s father pays £1,000 for medical cannabis in NHS delay
Epileptic girl, two, who is one of the first British children to be prescribed medicinal cannabis STILL can’t get the treatment on the NHS as her father has to pay £1,000 a month for a private supply
- Robin Emerson, 31, said his daughter needs the meds for her deadly epilepsy
- He has accused the Government of putting money into drug dealers’ pockets
- Flying from Northern Ireland to pick up the medicine is unsustainable, he said
One of the first children to be prescribed medical cannabis in the UK still can’t get her desperately-needed medication on the NHS.
Jorja Emerson needs the drug to treat her severe epilepsy, which can cause life-threatening seizures, her father says.
But, despite being prescribed a medication called Tilray by a private doctor in London in November, the Northern Irish family still can’t get it in their own country.
Robin Emerson, 31, has had to pay £1,000 for one month’s supply of his daughter’s medicine and had to fly to England himself to collect it.
He accused the Government of putting children’s lives at risk and ‘putting money into the pockets of drug dealers’.
Robin Emerson (pictured with his daughter, Jorja) has had to pay £1,000 for a month’s supply of medicinal cannabis for his daughter and had to fly to England to collect it because he claims he can’t get it on the NHS because of supply problems
Mr Emerson has said the way the family is getting the medicine is unsustainable and he has had to borrow money from his friends in order to get it.
The family’s difficulty comes after they originally faced weeks of delays in December because of a supply problem with the hospital pharmacy the parents used.
It is unknown whether the same issue – concerning agreements between the pharmacy and Canadian manufacturer – is still the cause of the problem.
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‘The process has been totally outrageous,’ Mr Emerson told The Times.
‘The government and the medical establishment are putting money into the pockets of drug dealers.
‘These parents are unable to get help through legal channels. A child is going to die unless this is sorted out.’
Medical cannabis was legalised on November 1 last year and is supposed to be available through NHS specialist doctors.
It is most known for benefiting children with severe epilepsy, whose parents were the main campaigners for legalisation.
Jorja, from Dundonald in County Down, has epilepsy so bad it can cause up to 30 seizures a day and each one has the potential to kill her.
Two-year old Jorja Emerson is believed to have been one of the first children to be prescribed medical cannabis after the drug was rescheduled in November
Sir Mike Penning, MP for Hemel Hempstead and co-chair of a parliamentary group on medical cannabis, said the delay to Jorja’s case is an ‘assault course of bureaucracy’
She is allegedly taking six medications to try and control the condition, including a strong sedative and drugs which have been prescribed off-label.
Mr Emerson is now giving Jorja a cannabis oil called Tilray, which is given twice a day in the form of drops on the tongue – other parents say their children have had good results with the medicine.
He blamed the Government’s Health Secretary for his daughter’s healthcare woe, adding: ‘Matt Hancock is the man in charge and he’s not stepping up.’
When Jorja was first facing delays to her treatment in December an outraged MP suggested politicians themselves travel to Canada to get the drug.
Sir Mike Penning, MP for Hemel Hempstead and chair of a parliamentary group on cannabis, criticised authorities’ slow movement in Jorja’s case.
He said in December: ‘Parents like Robin already have more than a head full, coping with the stresses and strains of caring for very sick children.
‘The last thing they need is a long and tortuous process to actually get the medicine that’s been prescribed.
‘This assault course of bureaucracy needs sorting out once and for all.’
THE LANDMARK CASE OF BILLY CALDWELL
Billy Caldwell’s mother Charlotte (pictured together) had seven bottles of cannabis oil confiscated at Heathrow Airport customs, prompting a row over cannabis oil
Cannabis oil was thrust into the limelight when epileptic boy Billy Caldwell’s mother had seven bottles confiscated at Heathrow Airport customs.
The 12-year-old sparked a row over the medicinal status of the oil, prompting the Home Office to step in and grant his mother Charlotte an emergency licence for the product that was calming his seizures, which contained THC.
Billy’s bottles were confiscated on June 11 after Ms Caldwell brought them in from Toronto.
On the back of the cases of Billy and fellow epileptic boy Alfie Dingley, six, Home Secretary Sajid Javid called for a review into medicinal cannabis.
In a major shift of policy, he announced in July that some products containing the drug would be available on prescription in the UK from the autumn.
On the back of today’s change to the law, Ms Caldwell said she wept with joy.
‘For me what started off as a journey which was about the needs of my little boy actually turned into something, proved to be something, a lot bigger,’ she told Sky News.
‘It proved to be the needs of a nation.
‘Medicinal cannabis gave me back my right as a mummy to hope, but the most important thing medicinal cannabis has done is given Billy back his right to life.
‘Only relatively recently did our Government and country really start to appreciate just how many wee children and people of all ages were affected by the difficulties associated with accessing medicinal cannabis.
‘But it became clear it wasn’t just about what was perceived to be a small number of very sick children and that medicinal cannabis could make a life-changing or life-saving difference to more than a million people.’
Although thrilled by the law change, Ms Caldwell hopes regulations will be expanded to allow more people to benefit from cannabis-based treatments.
‘This is new ground for everybody. We did in a few days what successive UK governments failed to do in more than half a century and made medicinal cannabis legal,’ she said.
‘Then, as now, politicians didn’t realise the complexities involved.
‘There’s a wide range of conditions, each of which can only be treated by certain forms of medicinal cannabis.’
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