The mother of a desperately ill 11-year-old boy who is due to run out of “lifesaving” medical cannabis says he will die without urgent intervention from the Government.
Joanne and Paul Griffiths’s epileptic son Ben only has six weeks’ worth of Bedrolite and Bedica cannabis oils left, after supplies from the Netherlands ran dry since Britain left the EU single market and customs union.
Health Secretary Matt Hancock told the Commons this week that the Government was seeking an “urgent legal fix”.
And Mrs Griffiths said failure to break the impasse will almost certainly have fatal consequences for her son.
She told the PA news agency: “The situation is dire – without this medication my son will die.”
And in an emotional plea to Mr Hancock and Prime Minister Boris Johnson, Mrs Griffiths said: “As a mum myself, and to Mr Hancock and Mr Johnson as parents themselves, I’m asking – please, sort this out.
“My son’s life depends on it.”
Ben, who has four older sisters and a twin brother, has suffered with seizures since birth. He has brain damage, cerebral palsy and has autism.
At its worst, he has up to 300 seizures a day, with the worst ones occasionally lasting for up to an hour.
But the cannabis oil he has been on for the last two years has given him the first seizure-free days of his life. He now typically has no more than five fits in a day, usually lasting just a few seconds.
Mrs Griffiths, 45, from Preston, Lancashire, said: “Ben’s life has been changed by Bedrolite and Bedica.
“He’s happy, he goes to a special school and he’s starting learning, teachers say he’s making progress, and he seems happy.
“He loves life now, he loves being outside, swimming, going on his trampoline.
“He doesn’t like the hospital, he gets upset going there.
“When he is having so many seizures, you can see him giving up.
“If we run out of the oils he will have to go into Intensive Care at Alder Hey (children’s hospital in Liverpool).
“He will start having hundreds of seizures again, and the reality is, sadly, he just won’t survive.
“So my message is for the Government to please make sure this doesn’t happen.
“It is so, so upsetting because this is avoidable. It is completely preventable.”
Mrs Griffiths said the monthly prescription is far less than the cost of keeping her son in hospital.
The Government previously cited a range of alternative cannabis-based medicines available to UK patients, but Mrs Griffiths said the Dutch products were the ones which worked best for her son.
Louise Cousins, director of external affairs at Epilepsy Action, said: “For Ben and others who have seen significant reductions in seizures and improvements in quality of life while using these particular cannabis-based medicines, the thought of having to switch products or to go without them entirely is very concerning.
“Severe epilepsies are often resistant to existing treatments and families will have tried numerous other medications to control seizures. It is not always as simple as switching to a different cannabis-based medicine or a different treatment. There are risks attached to this.
“This is yet another worry for these families on top of the years of battling for access to these treatments on the NHS and caring for a loved one with severe epilepsy.
“We urge the Health Secretary to deliver on his commitment to finding an urgent solution and ensure that those who are currently benefitting from these products can continue to access them.”