Jackson Campion is the latest victim of the NHS postcode lottery
The desperate parents of a disabled child are pleading with the NHS to give their son access to a new drug. Jessica and Ashley Campion say the new medication could ‘massively’ improve their seven-year-old son’s quality of life.
Jackson Campion suffers with Duchenne’s muscular dystrophy, an extremely-rare genetic disorder which causes the muscles to deteriorate. Affected children are often wheelchair-bound by the age of 12, and have a life expectancy of just 30 years.
His parents’ worries began when they noticed Jackson often fell over and sometimes had difficulty standing. Jessica and Ashley soon took him to be seen at Birmingham’s Heartlands Hospital in 2021.
Jessica, from Uttoxeter, told StokeonTrentLive: “They kept insisting there was nothing wrong with him and then they finally did a test and it came back with this. We’d never heard of it, like I’m sure many others haven’t either.
“It’s a life-limiting condition, so finding out was absolutely traumatic. There are no genetic conditions in our family histories that we’re aware of, so it was a complete shock. We thought he just had dyspraxia. So for the doctors to turn around and reveal it was something so severe was just heart-breaking.
“For at least six months after the diagnosis, we were very numb. It was so hard to take in. Now our focus has changed from the shock of it to just doing our best for him. At the moment, that’s getting our hands on this drug.”
Jessica and Ashley say givinostat – a new drug released in the UK last December – could slow the progression of the disease by ‘two-to-five years’.
The experimental treatment is available under certain NHS trusts via an early-access programme. But University Hospitals of Birmingham NHS Foundation Trust (UHB) is not taking part – meaning Jackson is unable to get the medication.
“I just think it’s cruel,” Jessica said. “There are so many facilities and support options available for people who have issues stemming from drug abuse and gambling. Things that people might not have consciously chosen, but things they chose nonetheless. Our son didn’t have a choice in this condition. He was given it unfairly. He was born with it and there’s nothing for him.
“When you know there’s something that could give your son a few extra years and you can’t get it for him, it’s extremely difficult to handle. It’s horrible to think that it’s completely in somebody else’s hands. It makes you feel powerless.
“I just want them to listen to us. I understand that every NHS trust has only so much money allocated to it each month and they have to make hard decisions as to which departments to give it to. But they’re not taking parents’ feelings into account.”
University Hospitals of Birmingham NHS Foundation Trust has not responded to StokeonTrentLive’s repeated requests for a statement.
But an NHS spokesperson said: “A select number of trusts offer the treatment via a company-led Early Access Programme but it seems UHB is not one of these. Givinostat is not approved for Duchenne’s muscular dystrophy in the UK. Some boys in the UK took part in givinostat clinical trials and it is currently being assessed by Britain’s regulators: the Medicines and Healthcare products Regulatory Agency and the National Institute for Health and Care Excellence (NICE). If NICE recommends givinostat, then it will be available through the NHS in England, Wales and Northern Ireland.”
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