Thursday, January 19, 2012

NHS WON'T HELP LITTLE EVIE WALK

LITTLE Evie Tucker wants to be able to walk and dance just like her friends but the health service has refused to pay for surgery that could make it happen – even though it is available on the NHS.

Bosses have refused to pay for surgery that should enable the three-year-old to walk, yet the operation is performed at a hospital in the city.

Because the treatment is not routinely funded by the NHS, it had to be applied for. A special panel which considered the family's application ruled Evie's case was no stronger than other people's who might also be helped by the same operation.

The family now face a bill of £23,000 for the surgery to help their little girl, who can only manage a few steps with the aid of a walking frame after being born prematurely when her mother had a fall.

The operation, which can help children with cerebral palsy to walk, has been available at Frenchay Hospital since last May.

But despite the local hospital being the only one in the UK currently offering the service to patients like her, Evie's family are now facing the challenge of raising the funds themselves.

The operation, known as a selective dorsal rhizotomy, could see Evie able to play with her friends.

The three-year-old was delivered ten weeks early after her mother Karissa Skidmore suffered a fall. She spent her first seven weeks in the neonatal intensive care unit at Southmead Hospital, where brain scans showed that she had cerebral palsy.

While the youngster can do many of the things that her peers can, she can only crawl or walk a few steps with the aid of her walking frame.

The operation involves cutting some of the nerves in the spinal cord to overcome the tightening of muscles that makes it difficult for some youngsters with cerebral palsy to walk unaided.

Miss Skidmore, 28, who lives in Avonmouth, hopes her daughter will be able to have the surgery before she starts school in September but after their application for funding was turned down by NHS Bristol – which funds healthcare in the city – the family will have to pay for it themselves.

The treatment is not routinely available so it was considered by NHS Bristol's exceptional funding panel, which refused the request.

A letter from NHS Bristol said: "The panel agreed that there is a small but significant cohort of patients who may benefit from this new developing procedure and they had not been supplied with sufficient evidence to demonstrate that Miss Tucker has the potential to benefit over and above other patients with a similar condition for whom this treatment is also not currently available."

The family has appealed against the initial decision, but now needs to focus on fundraising to pay for the treatment on a private basis.

Friends have offered to run the Bristol 10k and hold raffles for the cause and the family is considering other ways of raising the money.

Miss Skidmore, who works in accounts, said: "They said early on that judging by Evie's brain damage she would not be able to walk, talk and might not be able to eat... but she does everything really that every other three-year-old does, apart from being able to walk.

"Without the surgery she will not be able to walk by herself.

"She has a walker, which she probably manages about ten steps with before she gets really tired so mainly she crawls around."

Miss Skidmore, who also has a five-month-old son, Jack, with partner Dan Tucker, first heard about the surgery when the family of Bradley Stoke youngster Toby Cox were raising £36,000 to fund the same operation in America because it was not then available in the UK.

"I want Evie to have the surgery as close to her fourth birthday in March as possible as she is not at school yet and it will not interfere with that," Miss Skidmore said.

"The younger she has it the better as it will mean she has not had the chance to get into any bad habits.

"It would make a huge difference to Evie if she could walk. I can see in her face how frustrated she gets at not being able to join in with her friends walking and dancing and will make a difference to all of us as a family.

"This is a postcode lottery – they are saying the treatment is not available to other children but it is to those in other parts of the country."

Since the form of surgery was first offered at Frenchay, 12 operations have been carried out by consultant neurosurgeon Kristian Aquilina, who learnt the technique at St Louis Children's Hospital in the US.

As the only hospital in the UK currently offering the procedure, referrals have come in from across the country, with most being paid for by the NHS. A further 14 children have been assessed by Mr Aquilina and had funding refused by their local NHS trust.

A spokeswoman for the primary care trust said: "NHS Bristol is responsible for distributing services fairly across the whole of the population of Bristol, a position that means we have to make difficult decisions about funding.

"Unfortunately, the need for healthcare services usually exceeds the resources available. We cannot always provide NHS funding for all of the treatments that patients request."

To support the family's fundraising efforts visit www.justgiving.com/ Evieswishtowalk.

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