Great Ormond Street Hospital patients are being “left in limbo” as their life-changing treatment is no longer available from the NHS.
A Surrey schoolboy may be forced to undergo more than 10 operations because his existing, non-invasive treatment has been withdrawn in the UK.
Harry Bridgeman, 11, has scoliosis – which means his spine is growing curved instead of straight – for which he has been treated by the world famous children’s hospital in London since he was a baby.
Five years ago, he was fitted with a spine-straightening metal rod – known as a MAGEC rod – that required no ongoing surgery.
But now it needs replacement, he and his family, from Hampton, have been told the NHS is no longer offering it – even though it remains in use across Europe and the US.
They have been told Harry must instead be fitted with a different device – called a Harrington rod – which will require him to undergo two operations per year until his late teens.
Harry said: “The Harrington Rod will require a lot more operations and recoveries, which will mean taking time off school every six months.”
He is one of dozens of spinal patients at GOSH in the same situation, his mum Natalie said, leaving the hospital’s service under pressure, with longer waits for operations.
Both the Harrington and MAGEC rods are extendable, meaning they can be elongated after being implanted, keeping up with a child’s growth.
But whereas the Harrington requires two operations per year to keep extending it, the MAGEC is extended using magnets.
Harry described the rod as a pain-free, half-hour procedure every six months, with his having been fitted in 2019.
Some concerns had been already raised about the rod by then, as there were reports of them breaking inside patients years after being implanted.
But, Harry and his parents, Chris and Natalie, say experts told them the MAGEC rods were still the preferable treatment.
In 2020, the UK’s Medicines and Healthcare products Regulatory Agency (MHRA) began investigating concerns about the rods, after which they were withdrawn internationally.
Harry’s rod has now broken, but, said Chris, they had “five good years” out of it, during which Harry would have had to undergo another 10 operations if he’d had the Harrington.
The broken rod isn’t causing any pain or discomfort, it just means it can no longer be extended as he grows – so a replacement rod is required.
Since it was internationally withdrawn, MAGEC’s manufacturer NuVasive Specialized Orthopaedics (NSO) has made changes.
MAGEC rods are now back in use in many countries – but not the UK.
According to Natalie, the manufacturer and the MHRA have each blamed each other for the hold-up in their communications with her.
She said: “I don’t believe that the manufacturers are holding it up.
“It’s in their interests to get it back into the UK. It doesn’t make sense.”
Chris added: “I appreciate that it has to be tested properly but it seems that the UK is so far behind everywhere else.
“The real frustration is that all the kids are left in limbo. It’s a fabulous bit of technology but it’s effectively sitting on a shelf doing nothing now… Everybody just blames everybody else.”