Joanne Griffiths says the decision is endangering her son who was admitted twice this year with a suspected fractured skull after fitting
Ben Griffiths is currently being treated there after his condition worsened and he began having up to 300 seizures a day.
Joanne said she has the backing of her son’s neurologist but the move was blocked by the trust after it had a panel meeting.
She cried as she told i that her child has spent years suffering head injuries and “has no life” lying in bed all day. She fears the fits are causing Ben– who suffers cerebral palsy – further brain damage.
I see the fear in his eyes when he has the seizures. It breaks my heart
It comes as campaigners say patients are being denied NHS prescriptions for medicinal cannabis despite it now being legal.
The 43-year-old said: “We have tried him on dozens of anti-epileptic medications over the years and they have failed to work.
“I see the fear in his eyes when he has the seizures. It breaks my heart. He can have anything between 250 and 300 fits a day.
“Some children with uncontrolled epilepsy are getting cannabis and others aren’t. There is clear clinical need for this for Ben yet Alder Hey are blocking its own consultant’s wishes.”
‘He was screaming hysterically’
Now Ben can’t walk or go anywhere because he has a fit every minute or two. If he does get up he will hit the floor
Ben, from Much Hoole in Lancashire, was born with cerebral palsy – a condition that affects muscle control and movement – following a traumatic birth.
His parents Joanne and Paul, 39, noticed that he would shake down his right side as a newborn. Then he started going unresponsive and staring into space and he was diagnosed with epilepsy at six months old.
The nine-year-old’s fits have become more frequent and severe as he’s got older, explained his mother, who has six children.
His condition has caused the youngster – who is a twin – to suffer many injuries over the years and he was rushed to hospital twice this year with a suspected fractured skull.
“We never stop worrying about him falling and hurting himself,” said Joanne. “We have bean bags all around the house and we cover the cabinets and sharp edges with bed sheets. But we can’t totally eliminate the risks for him.
“He’s a happy boy who loves life and the water but he’s had a fit while swimming at school and bumped his head. He can’t do these things that normal kids do any more because he could die.”
Joanne shared a photo of her husband carrying her son home on a family walk last week, just before he was admitted to Alder Hey last Saturday.
“We had spent the whole festive period cooped up at home so we thought we’d get out of the house and give the kids a break with a dog walk.
“Now Ben can’t walk or go anywhere because he has a fit every minute or two. If he does get up he will hit the floor.
“He was screaming hysterically while fitting so we had to take him to hospital. His condition is very bad.”
Surgery could disable him
Ben was under the care of Great Ormond Street Hospital until last year when they told the Griffiths that there was no more they could do for him.
Surgery was discussed but his parents decided against it because it brings a high risk that he will be physically disabled. “He already has a weakened right side from his cerebal palsy but he can walk – we don’t want to cause him any further brain damage,” said Joanne.
After his fits got worse, in October he was prescribed Epidiolexis, a purified form of cannabidiol (CBD). It contains less than 0.1% of tetrahydrocannabinol (THC), the psychoactive part of the plant.
More than 50 children in the UK have already been treated with this on a compassionate access programme, The Guardian reported. This is a scheme to allow a patient with an immediately life-threatening condition or serious disease or condition to gain access to an investigational medical product.
“The Epidiolexis had a beneficial effect and dramatically reduced his seizures down from around 80 to 100 a day at the time to one to 20 a day,” said Joanne.
Ben has already shown to be responsive to cannabis. We need to find the right type but we are being denied the chance
“But then it stopped being as effective. His doctors then wanted to try him on a larger dose of an anti-epileptic drug we’d tried before which I was happy to give a go.
“But his fits got even worse and rose to up to 300 a day and they reduced this medication.
“We now want him to try Tilray and Bedrocan which come in higher THC form. Ben has already shown to be responsive to cannabis. It may now be the case that we need to find the right type – some THC along with CBD – and dose but we are being denied the chance.”
Fight for access to the drug
The Government announced plans earlier this year to assess the use of medicinal cannabis earlier and doctors have been able to prescribe cannabis products to patients in the UK since November 1.
It came after the high-profile cases of two children with severe forms of epilepsy, Alfie Dingley and Billy Caldwell, whose conditions appeared to be helped by cannabis oil containing THC.
However, the first child believed to be prescribed medical cannabis in the UK has been unable to gain access to the drug, it has been reported. Jorja Emerson’s father, Robin, claims he cannot get the drug because no UK pharmacy holds a licence to sell it.
Joanne said parents of children with severely uncontrolled epilepsy shouldn’t be forced to fight for access to the drug.
“Alder Hey say that the effectiveness of cannabis isn’t proven but it’s clear it’s helping kids like Charlotte Caldwell’s son so how can they say it won’t help my Ben when nothing else is working?
“They don’t know the long term effects of THC on children’s brains but when the risk that their illness will kill them is greater it should be prescribed. That argument doesn’t even apply in our case as Ben has the mental capacity of a ten-month-old baby from his cerebral palsy and we’ve been told he won’t develop any further.
“We need the cannabis to control his fits and keep him alive.”
The Griffiths are requesting a second opinion and have asked to be referred to a neurologist in the Netherlands.
Alder Hey Children’s NHS Foundation Trust said it cannot comment on individual cases.
A spokesperson said: “Neurologists at Alder Hey will consider whether a child is eligible to take cannabis-based medical products taking into account a number of factors. This includes the clinical history of the child, the scientific and clinical evidence for use of cannabis based medical products in particular clinical situations, and the published guidance from NHS England and the British Paediatric Neurology Association (BPNA).