NHS surgery U-turn hope for young Cumbrian girl
Last updated at 14:38, Thursday, 31 July 2014
Cerebral palsy sufferer Isabelle Pears is just one step away from having life-changing surgery to help her walk.
The five-year-old’s story touched the hearts of many when her parents appealed through the News & Star earlier this month asking for help to fund a specialist operation for their daughter.
Little Isabelle has spastic diplegia, a tightness of her legs which makes it extremely difficult for her to walk. Her parents fear she could soon end up in a wheelchair.
Workington couple Nicola and Lee Pears started a £25,000 campaign called Isabelle’s Dream as they thought they had no option other than to pay for the operation themselves as it was not routinely funded through the NHS.
But in a welcome u-turn, the NHS has now announced that 120 youngsters will be able to take part in trials of the Selective Dorsal Rhizotomy (SDR) – and Isabelle’s family yesterday received the overwhelming news that the youngster met the criteria “in principle” for NHS funding.
However, they now have one last hurdle to clear before final confirmation can be given and that is for the Cumbria Clinical Commissioning Group (CCG) to agree to pay for Isabelle’s physiotherapy following surgery.
Mum Nicola, 34, said she was “relieved” following the news, but was still on edge awaiting the final confirmation.
The money already raised through Isabelle’s Dream – £9,600 – will now either be used for her daughter’s aftercare if the CCG does not fund the physiotherapy, or be returned to donors if not needed. However, until they get definite information about Isabelle’s surgery and aftercare, they cannot make a decision. When they launched the campaign they did not know the NHS-funded evaluation programme was to take place.
“It’s a difficult situation,” Nicola told the News & Star. “I think it’s fantastic for these children they’re looking to evaluate and we are so grateful.
“But as yet, we have no clarity with regard to what will happen to monies already raised until we get confirmation from the CCG for her post-operative care.”
In the letter received yesterday from Isabelle’s consultant neurosurgeon John Goodden from Leeds General Infirmary, he said that the St Gregory’s School pupil met the funding criteria in principal.
“There is just one final hurdle which needs to be cleared before this is final,” explained Mr Goodden. “I am in the process of addressing this. The CCG which holds the budget for a number of different areas of health care, has to agree the funding for physiotherapy when you get home again after the SDR surgery.”
A spokeswoman from the CCG told the News & Star that they could not comment on specific cases, but that any requests for specific physiotherapy are considered on a case-by-case basis, once requirements are understood.
Isabelle was diagnosed three years ago and her condition leaves her walking on her toes and with a swing in her step.
The youngster from Newlands Lane, wears splints throughout the day and leg gaits at night and has been through painful rounds of botox, extreme physiotherapy and has her legs in plaster casts for weeks at a time to try to help the problem. But these have had little effect on Isabelle and her family say her condition is now at its worst.
NHS England says the Commissioning through Evaluation programme aims to gather evidence on the SDR procedure – introduced in America – which involves opening up the bones of the spine in the lower back to operate on the nerves, which could potentially help relieve spasticity.
It is not routinely funded because, although it is a promising treatment, current evidence on its effectiveness is limited.
The procedure is being offered at five hospital trusts across England.
Mr Goodden, who will hopefully carry out Isabelle’s operation around November-time, said: “We are delighted to be working with NHS England to deliver SDR. This will help change the lives of many children in the north of England because families will have access to SDR without having to raise funds privately.”
First published at 14:30, Thursday, 31 July 2014
Published by http://www.newsandstar.co.uk
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