A TEENAGER from York and his family are hoping he will be one of the first in the UK to undergo a pioneering procedure to help him walk independently for the first time.
Tom Arnett, 14, of Strensall was born with cerebral palsy, leaving him unable to walk due to nerve damage which badly affects his ability to control leg movement.
His mother, Adele Sullivan, 35, said she and Tom’s father Andrew, who is currently serving in Afghanistan, are now hoping to raise £25,000 for surgery in Bristol, after NHS North Yorkshire and York said it could not fund the op.
The process, known as selective dorsal rhizotomy, only became available in the UK last year, but could provide a new lease of life for Tom.
Mrs Sullivan said: “They take out a tiny piece of bone from the spine, then work out which is the nerve that isn’t working in the spinal cord and they cut it. It stops his brain getting the messages which tell his legs to tighten up.
“I got referred to the neurosurgeon in Bristol and he said Thomas would benefit from surgery. He then put in an application to the PCT for funding, but they said no.”
According to North Bristol NHS Trust, the consultant looking after Tom’s case has now submitted more information to NHS North Yorkshire and York to support the application for funding.
A spokesman for Bristol said: “We have carried out six of the procedures and have another four planned – two of these are self-funded and eight have been sorted out with funding via two PCTs.
“So far we have had five rejections and one of those is Thomas.” NHS North Yorkshire and York declined to comment on the funding.
The National Institute for Clinical Excellence (NICE) which issues guidance to health trusts on clinical procedures and drugs, updated its advice on selective dorsal rhizotomy in December, saying it was “clear that the operation can improve comfort and mobility” but that it carried risks of loss of bladder control and loss of leg movement. It did not give guidance on whether the operation should be funded locally.
Mrs Sullivan said Tom, a pupil at Applefields School in Burnholme, currently uses a wheeled frame, called a Kaye Walker, to help him walk. However, if he undergoes the surgery, he should be able to walk on his own with the help of sticks.
His mother said: “It would be unbelievable if he could walk because he depends on me or a wheelchair.”
In a bid to raise the money for the operation, the first committee meeting of the Stand Up For Thomas campaign took place on Thursday. Treasurer and family friend Clare Inkster said: “The York PCT have been unable to give funding for this at the moment, so we have set up a committee and some fundraising ideas have been flying in.”
Mrs Sullivan said: “We need donations, support and ideas – just any support. We are hoping to have raised the money in four or five months.”
If you would like to help raise funds or make donations to the campaign, Mrs Inkster has set up a web page at justgiving.com/makeastandforthomas
Short-sighted health chiefs
THOMAS Arnett is an ordinary teenager with a crippling condition.
Nerve damage caused by cerebral palsy means he is unable to control his leg movements, and so unable to walk.
Now, however, a technique has been developed which offers real hope. Known as selective dorsal rhizotomy, it involves surgeons removing a tiny piece of bone from the spine so as to get access to the spinal cord. They can then work out which spinal nerve is not working, and cut it to stop the brain getting messages which tell the legs to tighten up.
There are some risks, but the procedure offers genuine hope that Thomas could one day walk. It has been approved for NHS use, and surgeons in Bristol are ready to operate. The only problem is North Yorkshire health bosses won’t pay.
As a result, Thomas’s parents – mum Adele, and dad Andrew, who is serving in Afghanistan – are trying to raise the £25,000 needed themselves. They shouldn’t have to.
We know health budgets are tight. But other health authorities have found the means to pay for this operation.
Thomas’s is not an everyday condition: so it is not as though NHS North Yorkshire and York would be swamped with demand. And the procedure offers real hope that this young man might grow up to become a contributing member of society.
Refusing to pay is harsh, and short-sighted. Local health chiefs should think again.
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