A football-mad four-year-old boy has been refused an operation to enable him to walk and play his favourite sport due to an NHS postcode lottery. Jack Rooke suffers from cerebral palsy but a procedure available at a hospital just seven miles away could make a dramatic difference to his life. His family have now launched an appeal to raise £35,000 to pay for the surgery privately after his local NHS trust refused to provide funding.
His parents Hannah Trimby, 26, and Sam Rooke, from Whitchurch, Bristol, are angry that his fate has been decided by a postcode lottery in which some primary care trusts provide funding while others do not.
Full-time mother Hannah, said: ‘I’m fuming that living so close to the hospital doesn’t mean that Jack will get the surgery.
‘You would think you would have to be in the area to get the surgery.’
Jack suffers from spastic cerebral palsy, meaning muscle tightness in his legs makes it impossible for him to walk unaided and he relies on a specialist frame.
He needs an operation known as an SDR – selective dorsal rhizotomy – which involves cutting the tight muscles and nerve endings in order to loosen the legs and make them more agile.
Frenchay Hospital in Bristol has carried out 37 of these procedures since they became available in May, but around 20 of these have been funded privately.
After the operation, patients need months of intensive physiotherapy to strengthen their legs.
Hannah added: ‘It is his dream – it would be amazing for him to be able to walk on his own, and hopefully the surgery will help prevent him from needing more orthopaedic surgery in the future.’
Neurosurgeon Kristian Aquilina, who performs the operation at Frenchay, believes Jack is eligible for the treatment. Unfortunately for Ben his local primary care trust – NHS Bristol – does not fund the procedure.
Sam, a plumber, said: ‘Jack loves football and loves music. He knows he can’t walk and that other children his age can and he knows he has cerebral palsy and about the operation.
‘Jack doesn’t let it hold him back and is the happiest kid I know. But because at the moment he crawls, he cannot kick a ball unless you hold his hands.’
Later this month, Hannah and a friend are hoping to raise money by sitting in a bath of porridge while having their hair washed in gravy.
Jack was born prematurely, at just 28 weeks, weighing 2lb 12oz, and after spending the first 11 weeks of his young life in neonatal intensive care, doctors discovered he had developed cerebral palsy due to brain damage he suffered in the womb.
He suffers from a form of cerebral palsy called spastic diplegia, which means he cannot stand or walk unaided.
Bristol-based charity Cerebral Palsy Plus helps local sufferers and their parents cope with the debilitating condition.
Spokeswoman Cathy Truman said: ‘A number of our members are individually fund-raising to get the surgery themselves, because Bristol NHS won’t pay for it. We will support them with that as much as we can.
‘What they are doing at Frenchay is cutting edge – it’s one of the few places in the country that can perform the surgery.
‘It is ironic that this cutting-edge surgery is based here in Bristol and yet is not funded locally.
A spokesperson for NHS Bristol said: ‘The Primary Care Trusts have been in discussions with North Bristol NHS Trust which is keen to establish a service for SDR.
‘During the course of these discussions, it became clear that this was a high cost specialist procedure which required regional or national commissioning rather, than locally, to avoid inequitable access to the treatment.
‘The newly formed National Commissioning Board is currently consulting on a draft policy across England on the provision of Selective Dorsal Rhizotomy for children with spasticity secondary to Cerebral Palsy.’