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Familys fears over disabled teen


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Posted

Published Date: 10 June 2008

By Kate Lahive

Health reporter

Article and Picture here. From the website

THE FAMILY of a teenager who suffers from a rare muscle wasting condition claim he has not been weighed or measured for two years because a Sheffield hospital doesn't have a suitable hoist.

Tom Roberts, aged 17, has Duchenne Muscular Dystrophy a disease which means he has gradually lost the ability to move and is now wheelchair bound.

Tom, from Darnall, can be moved out of his wheelchair at home by sitting on a sling attached to a hoist so he can be lifted into a chair or bed.

But he cannnot be lifted by the hoists at Sheffield Children's Hospital, which are a different design.

His mother Diane said it means doctors do not have accurate information about Tom. And she is worried if he becomes seriously ill there could be a problem in treating him with the right quantities of drugs.

"Tom can't even have the simplest and very, very essential tests done such as his height and weight, let alone X-rays and scans," said Mrs Roberts. "He has not had his weight taken for over two years. This is very important, especially as he could be rushed into intensive care at anytime.

"They need his weight so they can give him the right amount of drugs and they should not have to guess how much he weighs.

"He can't straighten his legs and his height is measured by his arm span, but that's a challenge as he can't straighten his arms fully either."

Mrs Roberts stressed she and Tom, who has undergone surgery to straighten his back and also has kidney problems, are satisfied with the medical care he has received over the years, but are unhappy about the hoist situation.

She added: "The doctors have have no option, they are just as frustrated as Tom and me."

John Reid, director of nursing and clinical operations at Sheffield Children's NHS Foundation Trust, said new hoists had just arrived at the hospital and will be in use in a few weeks time once staff have been trained to use them.

"We have informed Mrs Roberts of the delivery and she is more than happy that the new arrangements will be in place by the time she next visits the trust," he added.

Posted

the weight thing would be easy. use a towbridge measure like my hubby uses at work. weight the wheelchair on its own then weigh it with him in and work out the difference.

Posted

Fame beckons Di :wink:

Glad it went in so quickly - funny how as soon as the Star got in touch they were ordering the new hoists - just shows how sometimes people need a kick up the backside :wink:

Posted

Fame beckons Di :wink:

Glad it went in so quickly - funny how as soon as the Star got in touch they were ordering the new hoists - just shows how sometimes people need a kick up the backside :wink:

Lol Dan,

Yes, it is a shame. That I had to go to these lenghs, So Tom and all the other young persons. Who are in a similer situation to Tom..

Can have the same level of care, as any other young person. Using the Hospital.

Posted

Can I have your autographs :P

Tom looks a lot like you now Di!!

Good on you for getting them to get their butts into gear!

Posted

You tell 'em Di!

I don't see why people can't be immediately trained to use new hoists, it only takes a couple of hours practice. The personal care assistants at my work had to wait a year for training, it was PATHETIC :angry:

Posted

Go Di! (And Tom :wink:)

Can I have your autographs :P

Tom looks a lot like you now Di!!

Good on you for getting them to get their butts into gear!

You tell 'em Di!

I don't see why people can't be immediately trained to use new hoists, it only takes a couple of hours practice. The personal care assistants at my work had to wait a year for training, it was PATHETIC :angry:

I know Mez, he's so growning up.. Poor Tom, having to look like his mother he he he ... :P Could be worse I guess he he ..

Awwe bless you, Many thanks for the replys and support.

'claire_louise' 'Mez83' and 'Miranda'

Hopefully, Tom next visit and future vistis to the hospital, will be a breaze.. :)

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