Snip in the spine that has freed little Oliver from his wheelchair
...so why are other families of cerebral palsy children forced to pay thousands for it – even though it’s on the NHS?
DISABLED from birth, Oliver Dickey had been confined to a wheelchair since he was tiny – until a ground-breaking operation helped him to walk by himself. Since the radical ‘snip in the spine’ procedure, Oliver – who has cerebral palsy – uses sticks to walk and has taken 40 independent steps.
‘When he walked on his own for the first time we cried,’ recalls his mother Charlene. ‘It has changed all of our lives.’
Many families of children suffering from cerebral palsy are desperate for the operation, called selective dorsal rhizotomy (SDR), yet it is only available for a very limited number on the NHS.
Doctors believe it will not help every child with cerebral palsy. And it can leave some with more prob- lems than they had to start with.
That is not enough to deter fami- lies rejected by the NHS from m raising up to £60,000 to travel to o a pioneering, world-renownedd clinic in America to have the oper- ation privately.
Oliver, now seven, is one of those e who had the operation at the St Louis Children’s Hospital in Missouri in 2014. His cerebral palsy was classedd as grade 4, which meant he was s unable to walk and needed supportt just to sit upright. It also meant he e was ineligible for NHS funding, , which is considered only for those e less severely affected.
Charlene, 29, from Coleraine, , Northern Ireland, said: ‘The paedi- atric neurosurgeon at the clinic told us Oliver’s balance and sitting posture would improve, his general l mobility would improve and he e would walk independently in protected environments, like at home.
‘We were never in two minds about what to do. There was more to gain than there was to lose.
‘He walked on his own for the first time in February. He can now stand beside his little brother Max and go to the playground with his friends.’
Cerebral palsy affects about 400 children in the UK every year. The condition, usually caused by brain injury at or around birth, means children have difficulty controlling muscles and movements and the lower limbs are stiff.
Until recently, treatment was limited to physiotherapy, orthopaedic surgery and Botox injections to provide temporary relief from muscle tightness, or spasticity.
The SDR operation involves opening up the lower spine and cutting the sensory nerves to reduce the tightness permanently. This can help improve movement, balance and posture, and can reduce painful overnight spasms.
US research suggests SDR can produce more dramatic improvements, helping children gain new movement in their legs, and even walk unaided for the first time.
NHS England is currently evaluating the procedure, funding 120 cases a year at five specialist centres including Great Ormond Street.
Meanwhile, the team at St Louis has carried out thousands of SDR operations.
It has much wider assessment criteria and sometimes agrees to treat childrench from the UK based on videosvide and clinical documents submittedsubmitt by parents.
But NHS specialists say many are coming home with further longterm clinical problems that need intensive physiotherapy and additional surgery.
These include muscle weakness and floppy limbs, poor spinal control, problems with posture and poorer sensory awareness which reduces mobility.
Andrew Roberts, orthopaedic surgeon at The Robert Jones & Agnes Hunt Orthopaedic Hospital NHS Foundation Trust in Shropshire, said: ‘What happens, unfortunately, is if you’ve removed lots of spasticity, and that’s what was holding the child up, then you now won’t have a child who’ll be able to stand.
‘As children go through adolescence they get bigger and much heavier and they get a bit stronger, but it’s often a time when increasing weight leads to a regression of ability and function.
‘The real story is yet to unfold as the majority of children who went to the US have yet to become adolescents.’
And consultant neurosurgeon Benedetta Pettorini, who performs SDR at Liverpool’s Alder Hey Children’s Hospital, pointed out that, ultimately, issues associated with the brain injury that caused cerebral palsy cannot be corrected.
The operation is available privately in the UK – but patients taking this route would go through the same rigorous assessment before being approved.
An NHS England spokesman said current evidence for SDR was ‘limited’. The St Louis Children’s Hospital declined to comment.