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Thursday, 30 October 2014

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Unhappy Cumbrian mum slams ‘snail’s pace’ of NHS

A disabled mother has criticised the NHS system, claiming it is failing people at the time they need it most.

Michelle Wall photo
Michelle Wall with son Noah

Shelly Wall has Still’s disease, a rare form of arthritis which has resulted in numerous joint replacements, with limited movement and she is in almost constant pain.

The Abbeytown mum-of-three never complains, instead throwing herself into her own business and raising awareness of the need to take folic acid up to three months before falling pregnant.

The latter came following the birth of her youngest child Noah in March 2012.

He was diagnosed in the womb with hydrocephalus and spina bifida, and Shelly and husband Robert were warned he would be unlikely to survive birth.

Noah was born with only two per cent of his brain working and was expected to be paralysed from the chest down.

Despite this, the brave tot has gone on to defy doctors’ expectations almost daily and has been seen to move his legs slightly, has said his first words and even holds his head up.

Every day Shelly and Robert attempt to ensure Noah can keep up with other children and that they are doing everything possible to promote his development.

Their latest efforts have been thwarted by bureaucracy however, prompting them to issue a pleading letter calling on the NHS to help.

“We would normally be shouting about how good our NHS is,” Shelly said. “But we are finding that when it comes to getting the specific equipment needed for Noah’s physical and mental development, the system that governs the NHS moves at an incredibly frustrating snail’s pace.

“A baby of Noah’s age should be walking by now. With Noah’s condition we understand the importance of keeping his development on par with a so-called ‘normal’ baby, the only difference being we have to help him a lot more than you would a baby without any problems.”

From the age of six months, Shelly and Robert have been asking about medical aids to help him walk or at least stand and therefore boost his development both mentally and physically.

“Noah needs this, and has needed it for at least 10 months now,” she added. “We were given a piece of equipment when Noah was 19 months old to try at home, so he could stand upright.

“This would put him at the correct eye level for his age, which would stimulate his brain which in turn aids mental development. It would also aid in his physical wellbeing with circulation, posture, strength and other benefits too numerous to mention.”

Despite being given the stand, its multiple straps and awkward nature meant it was impossible for Shelly to use.

“It was more suited to use in a hospital where there would be a team of people to get Noah in and out of it,” she said. “This was not something that can be used by a disabled mother at home alone with a disabled baby.”

The family went away and researched an electric stand, which would not need Shelly to bend and move in the same way.

After agreement from the Cumbria Partnership NHS Foundation Trust, the Wall family received a visit from Noah’s physiotherapist and a company rep.

Shelly added: “The rep set a manual stand which takes Noah from a sitting position to a standing position, which for Noah was brilliant. The rep however struggled to adjust the many straps and constraints needed to support Noah, again this was not suitable for a disabled mother at home alone with a disabled son.”

The family are angry and frustrated that they must now wait for another meeting where Noah can try more appropriate equipment.

There will be further delays while reports are compiled and reviewed before a panel can review them and decide on the viability of funding the equipment.

“Noah is now 22 months old, which means he will have been delayed in his development by at least a year,” Shelly said. “This is time he will never get back.

“The NHS is staffed by amazing people who do their jobs because they care about people. Unfortunately the system they are constrained by seems to care more about money and red tape than individuals.”

A spokeswoman from the Cumbria Partnership health trust said: “We are undertaking an assessment to identify the correct equipment Noah needs. We understand Mrs Wall’s frustration and apologise for any delay. We are actively working with the family to identify and purchase the very specialist equipment he needs as quickly as possible.”

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