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Parents’ fury at NHS failure to prescribe life-saving cannabis for children

In brief

  • Parents of seriously ill children struggling to get medicinal cannabis
  • ‘The NHS is sitting back while these children are dying’

An executive at one of the world’s biggest medical cannabis companies has said he will fund treatment for a British child with epilepsy, as the NHS continues to fail to prescribe the potentially life-saving treatment.

It comes as parents increasingly give up on the NHS and turn to private wealthy funders despite the Government giving the green light to the treatment six months ago.

Parents of seriously ill children, including Billy Caldwell’s mother Charlotte, have spoken of their fear, anger and frustration as they struggle to secure treatment for their children.

‘Blue-lighted to hospital’

Ms Caldwell – whose struggle to provide the treatment for her son and whose campaigning helped change the law – told i that she had been battling against time to renew Billy’s prescription, with just one week’s worth of medication remaining.

She was speaking at the Women, CBD and Medical Cannabis Conference in London on Saturday.

Medical cannabis campaigners in Westminster in March (Photo: Jonathan Brady/PA Wire)

“You cannot stop an anti-epileptic medication abruptly,” she said. “The last time that happened Billy ended up being blue-lighted to hospital.”

Ms Caldwell said her neurologist had cited new guidelines from the British Paediatric Neurology Association (BPNA) as the reason she could not prescribe for 13-year-old Billy, who has been treated with cannabis-based products since 2016. A private prescription can cost in the region of £2,000 a month.

Cam Battley, of Canadian firm Aurora Cannabis, who was a panellist with Ms Caldwell on Saturday, pledged to fund Billy’s treatment on a month-by-month basis.

Ms Caldwell says she remains hopeful of securing an NHS prescription for Billy. The Belfast Health and Social Care Trust told her: “We are anxious to find a way forward for Billy and hoping to provide more information this coming week.”

‘Children are dying’

Robin Emerson, whose three-year-old daughter Jorja has severe epilepsy, criticised Government ministers for their failure to act.

“I have spent £50,000 to keep my daughter alive,” he said. “It was one of the most emotional days when [cannabis company] Aphria stepped in to fund her treatment because I couldn’t keep going.

“The NHS is sitting back while these children are dying. And their parents are out fundraising to try to keep them alive. It’s disgusting.”

A Department of Health and Social Care spokesperson said it sympathised with families “dealing so courageously with challenging conditions”.

“The systems are in place to import any cannabis-based product for medicinal use prescribed by a specialist, if it meets the quality standards applied to all unlicensed medicines.”

The BPNA did not respond to requests for comment.

History-making Billy

Billy Caldwell and his mother Charlotte (Photo: Charles McQuillan/Getty Images)

Charlotte Caldwell from Co Tyrone has been a leading campaigner for medicinal cannabis in the UK. Her son, Billy, 13, has a severe form of epilepsy.

In 2017, Billy became the first child to be prescribed cannabis oil on the NHS, and went from having daily seizures to 300 days without one. The Home Office then ordered his GP not to renew the prescription, forcing Ms Caldwell to travel to Canada to source his medication.

The Caldwells’ case made headlines when his medicine was confiscated at Heathrow Airport in June last year. The Home Secretary, Sajid Javid, responded to public outrage by granting Billy a licence for cannabis oil to be administered at home. But since the law change and resulting guidelines, Ms Caldwell is now fighting for an NHS prescription for her child.

She says that the treatment has transformed Billy’s life. “His seizures are much more controlled; he’ll make eye contact, he’ll now initiate a hug. The first day he put his arms around me, it was really, really emotional. One day last week, he managed to walk down the stairs holding on to the rail for the first time – he used to sit on his bum and shuffle down. He’s taking more interest in his toys and books, and becoming more mischievous by the day, which is the way it should be.

“Billy is autistic and non-verbal, but it’s like the pathways in his brain are opening up and he’s becoming more aware of his surroundings. I genuinely believe I’m getting to see my real son, to see the real Billy. I’ve been Billy’s mummy for 13 years, and I don’t think I really knew him. It’s almost like having a new son.”

Alfie’s expensive battle

Maggie Deacon and Alfie Dingley  Photo: Maggie Deacon/PA Wire)
Hannah Deacon with Alfie Dingley  (Photo: Maggie Deacon/PA Wire)

Hannah Deacon from Kenilworth in Warwickshire has waged a public battle to save her son’s life.

Eight-year-old Alfie Dingley, who has an extremely rare type of epilepsy, was granted a special licence in the UK in June, before the law was changed.

Alfie has been doing well, Ms Deacon says, but now his tolerance to the drug is building and he needs a new prescription for a different cannabis-based treatment.

“I’ll have to pay for the other product privately,” she says. “It will cost about £1,000 a month… he needs it.” Ms Deacon says the Government is lagging on putting the necessary training in place – and doctors are running scared .

She said one doctor told her that he “didn’t want to be a pariah amongst my colleagues”. She added: “We know one doctor who’s prescribing privately and she doesn’t want anyone to know who she is, because she’s terrified.”

Jorja’s cannabis fist

Jorja Emerson who is believed to be the first child to be prescribed medical cannabis since the drug was rescheduled in November (Photo credit should read: Robin Emerson/PA Wire)

Robin Emerson from Dundonald in Co Down has a three-year-old daughter Jorja with severe epilepsy, who at one point was having 30 seizures per day.
Mr Emerson says medicinal cannabis helped to reduce Jorja’s seizures to just three or four a day at a time when nothing else would work.

“Jorja was the first in the UK to get a private prescription after the law changed,” he said. “My neurologist is the only one brave enough to stand up and do what’s right for the children.

“A lot of my friends have children who are dying in hospital and people would rather write their end of life care plan than give them medical cannabis. Medical cannabis has changed Jorja beyond belief. My daughter could hardly lift her head off a pillow. At one point, she was in intensive care, and I was told to take her home to die. My Jorja is now thriving. The difference in her is night and day.

“I’ve heard of doctors saying to parents, ‘You can’t give your child cannabis – it would be like handing them a joint’. It’s just daft. Yes, cannabis products are unlicensed in the UK, but so are some of the other epilepsy drugs. We don’t know the long-term effects of chloral hydrate – it’s a date rape drug. We’re giving date rape drugs to our children, but they won’t give them medical cannabis.”

Your questions answered

What is the law?

In 2018, legislation was introduced that reclassified cannabis from a schedule 1 substance to schedule 2, meaning there was a medicinal benefit under certain circumstances. Cannabis-based treatments can be prescribed by doctors where other medication has failed.

How can cannabis help patients?

Cannabis-derived medications have been considered effective for patients with epilepsy, spasticity in multiple sclerosis or chemotherapy-induced nausea. It has also been shown to help relieve pain for patients with cancer or ­fibromyalgia.

Are there over-the-counter treatments?

There has been a rise in popularity of lifestyle products containing cannabidiol (CBD), the non-psychoactive substance in cannabis. These products often contain low levels of CBD and may not be very effective.

What about children?

The British Paediatric Neurology Association guidelines state that it only recommends using non-licensed cannabis products as a “treatment of last resort” for children. They also highlighted concern that high quantities of psychoactive tetrahydrocannabinol may affect brain development and pointed to a shortage of clinical trials. The guidance recommends that pure CBD-derived Epidiolex should be the default choice when considering prescription.

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