NHS Gloucestershire refuses to fund life changing operations for disabled children
CHILDREN desperate to live a normal life are being abandoned by the NHS which is refusing to fund operations that could allow them to walk.
While trusts around the country agree to fund the £23,000 operation, NHS bosses in Gloucestershire are ignoring the desperate pleas of parents and dashing the hopes of these five children, who just want to be like any other child.
All these children have spastic diplegic cerebral palsy, and need surgery if they are to avoid life consigned to a wheelchair.
But there is hope. Pioneering surgery called selective dorsal rhizotomy (SDR) could change their lives forever.
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But NHS Gloucestershire's refusal to fund the operation has forced their parents to raise thousands of pounds to have the surgery privately.
Their families say they feel their children are a victim of a "postcode lottery" because some other NHS trusts in the UK do pay for the procedure.
NHS Trusts for Cornwall and the Isles of Scilly, Plymouth, Derby and Cheshire are examples of trusts that have paid for children to have the specialist surgery at Frenchay Hospital in Bristol.
However, NHS Gloucestershire has never granted a single child funding for the £23,000 operation.
In November, the trust rejected an application to pay for the surgery for three-year-old Skye Swinton, from Arle.
As a result, her parents Ruth and John had to start a fundraising campaign to get together £35,000 for the procedure and subsequent therapy themselves.
Supported by the Echo, they managed to raise the money via generous donations and are now waiting to find out whether or not Skye will be accepted for the surgery at Frenchay Hospital. Ruth, 38, said: "The most frustrating thing is the fact that it's a postcode lottery because some NHS trusts do fund the operation. The fact that children elsewhere get the operation but we do not is very frustrating."
Four-year-old Joseph Skidmore, from Longlevens, had the surgery at Frenchay last summer. His family raised £35,000 after the NHS twice rejected their application for funding.
Joseph has gone from having knees that were clamped together and feet twisted at 90 degree angles to walking with a proper posture with the support of a zimmer frame.
An NHS Gloucestershire spokeswoman confirmed that the trust had not funded a single SDR operation.
Dr Liz Mearns, medical Director for NHS Gloucestershire, said the trust made its decisions on a case-by-case basis.
She said: "Cases such as these are complex, and we have to take into account both the current clinical evidence available and individual circumstances.
"This will also include the advice of doctors and alternative treatments available. We will always consider the latest evidence and guidance on specific treatments."
The National Institute for Health and Clinical Excellence (NICE), which sets guidelines for NHS trusts, advises them to make decisions on whether to fund the surgery on a case-by-case basis. NICE guidelines state that there is a risk of "serious but well-recognised complications" from the surgery, including deterioration in walking ability and bladder function, as well as possible spinal deformity later in life.