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Can NHS and MPs help our children?
THE parents from the Advertiser’s Help Us Walk campaign met NHS Swindon and Swindon’s MPs last week to discuss the best treatment for their children.
In April, the Adver ran the campaign to highlight the plight of three-year-old Jack Pike and six-year-olds Alycia Ellis, Robbie Davies and Corey Cummings.
All four children were diagnosed with cerebral palsy at a young age and are unable to walk. Their parents believe they would benefit from an operation known as selective dorsal rhizotomy which is available in America, but would cost them approximately £50,000. It is also available at Frenchay Hospital in Bristol.
Robbie’s family are waiting to find out if NHS Swindon will fund the operation at Frenchay, while Jack’s family have already started fundraising in case he is refused the operation on the NHS when he is old enough to qualify for it.
Alycia’s family have just started fundraising. She has been seen at the Robert Jones and Agnes Hunt Orthopaedic Hospital in Oswestry.
Corey’s family are also fundraising to pay for the operation should an appeal by his family for it to be paid for by the NHS be upheld.
On the back of our campaign, North Swindon MP Justin Tomlinson and South Swindon MP Robert Buckland arranged to meet the parents and NHS Swindon .
Kelly Cummings, mum of Corey, from Coate, said: “They explained future appeals would have to wait for the South West Commissioning Body to decide whether the procedure would be commissioned. They had no idea how long this would take.”
Jack’s mum Kylie, from Penhill, said the family have now raised more than £26,000 which would pay for the treatment in this country, but is now contemplating having to travel abroad because the surgery is not as advanced in the UK as it is in America.
She said: “During the procedure in this country they only cut nerve one and not nerve two, so I don’t know if there is much point in paying all that money when Jack would need both nerves cut to be able to walk.”
During the meeting, the PCT agreed to provide a named contact for the parents Mr Tomlinson said: “It was an extremely productive meeting on what is a very sensitive and complex issue.
“While early indications of the treatment in America are very positive, it has not yet been seen whether or not there are any long- term complications and no patient is affected in the same way. The parents understand that and it was agreed a named contact would be provided so communication can be improved and there is someone for the parents to talk to face-to-face.”
A spokesperson from NHS Swindon said: “The meeting with Justin Tomlinson and Robert Buckland on Friday was very positive. NHS Swindon will continue to review the current service to understand any service specific gaps, and we will be providing a named contact within Swindon NHS to improve communications.”