Longton mum pleads with Prime Minister Boris Johnson to intervene to help her son access lifesaving medication
The family of a seriously ill boy have urged Prime Minister Boris Johnson to intervene as they continue to fight to obtain life saving cannabis based medication to reduce his seizures.
Just three children in the UK have been prescribed cannabis based medicine on the NHS despite evidence that it drastically reduces life threatening seizures, since the law was changed in 2018 to allow medical cannabis prescriptions.
But the family of Ben Griffiths, 11, from Longton, who also relies on the medicine to reduce his seizures, have faced an uphill battle to obtain, and continue to have access to, a private prescription for the same European medicine, costing them more than £2,000 a month.Ben was born with a form of cerebral palsy which can trigger multiple epileptic fits.
A Dutch cannabis medicine drastically reduced his fits from up to 300 a day to between none and five.
But the family cannot obtain it on the NHS, so they now have to battle to find a staggering £2,100 for a monthly private prescription.
It is reported Mr Johnson has agreed to meet with two MPs about the issue after a cross party group of more than 100 MPs signed a letter to the PM on April 13 asking him to look at the issue.
The letter said: "“We write to urge you to intervene in the ongoing crisis surrounding lack of NHS access to life transforming whole plant extract medical cannabis for a number of children with severe drug resistant epilepsy.
“You will be aware that the law was changed in November 2018 to allow access to medical cannabis under prescription.
“The law change raised the hopes of other families with children suffering from similarly extreme forms of epilepsy. However, to the best of our knowledge, only 3 NHS prescriptions for the type of medical cannabis that was shown to be life transforming ...have been issued in the time since the law change.”
“It’s not happening for other families for several reasons including restrictive medical guidance.
“One of those children was able to obtain the medicine after suffering around 510 fits a month - Ben suffered 3,600.
“There aren’t many paediatric neurologists in the UK and they aren’t going to go against their own body’s guidance.”
“I want Boris Johnson to cut the red tape and urgently intervene - basically we want the law changed to help children like Ben. “I want him to help my child have access to his medication.
“I’m not going to live forever, we have to be sure he has safe access to his medication.”It’s mentally draining constantly asking for help. Three other families are allowed to live a normal life while we have to think in pounds, shillings and pence.
“It’s just not fair.”
In December officials said the arrangement for the medicine, sourced from the Transvaal Pharmacy in the Netherlands through a prescription by UK doctors, would be scrapped as UK prescriptions can no longer be fulfilled by EU pharmacies, though families later received reassurance the prescriptions would continue for six months while the issue was looked at.
Joanne added: “Boris Johnson needs to step in until all these issues can be ironed out for our children.
“It’s shocking and disgraceful that other children are bounced from one health department to the next, while others have their medicine.
“We have had to reduce his dose over fears we will run out of the medicine or shipments will be delayed.
“It means he is having more fits, maybe around 10 a day but it is still far less than what he was having.”
She also voiced her disappointment that her local MP, Katharine Fletcher, was not among those who had signed the letter.
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