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Living With Cerebella Ataxia

“Not Fit for Purpose”: One Man And His Wheelchair

There is a certain ilk of person who, how can I put this? use a chronic illness or disability as a means of validation. A role in life which is defined by their particular special needs.

I have witnessed this regularly in hospital, and whilst waiting to see C***sultants, and there is this weird “hierarchy” thing going on, as if they want to out do each other with how bad things are.

In addition, there are those who just use it as an excuse to expect the world and his wife to owe them something, thus rudeness and bad manners are considered de riguer.

“I AM IN A WHEELCHAIR!”.

“I AM DISABLED!”

“HOW DARE YOU EXPECT ME TO CONFORM TO SOCIAL NICETIES SUCH AS SAYING “EXCUSE ME, PLEASE AND THANK YOU!””

But, as you will read below, everyone has the right to complain when they are plainly just being jerked around and fobbed off.

As John Reid might put it, my wheelchair has “not been fit for purpose” for quite some time, if ever.

Andy, Pete, Richard and especially Cath will readily testify, as they are the ones expected to push the pesky thing and if it aint about to collapse, then it’s veering off and causing general mayhem to all around.

BUT, what it is funny when you accidentally bang into someone and they turn around ready to stick one on you, catch sight of me in the chair and are then sweetness and light personified.

David Davis is my local MP and this is what I put in a letter to him today.

Dear Mr.Davis,

I am writing to you in the hope that that some explanation can be gleaned from Wheelchair Services at our local PCT as to why they are unable to provide me with a suitable chair in order to carry out everyday outdoor activities.

My condition is known as Anti GAD Cellerebella Degenerative Ataxia, a chronic Neurological Disorder which has left me reliant on a wheelchair outside the house, and due to the progressive nature of the problem it will be a necessity indoors at some stage. I was forced to take retirement from teaching as a result in 2005.

The PCT provided me with a chair in early 2005, where it was made clear to me that this was a temporary arrangement as the apparatus was less than suitable for my needs.

On 12th October 2006, well over a year later, I finally saw an appropriate Occupational Therapist and he spent over an hour going through the specifications required for a new chair which he then prescribed.

I expected it to be necessary to wait and I was led to believe that I was placed on a list but on further inquiry over the last couple of days this became less clear and as a result, I am unsure where I stand.

The current chair has been condemned as unsuitable and dangerous by all Health Care professionals that I have seen recently, and has collapsed requiring remedial attention at least twice in the last couple of months.

I have to travel to the London Hospital at Whitechapel for treatment, often at short notice and I am worried that I may come to grief on this journey, or not be able to undertake it at all due to the many problems with the wheelchair.

The last breakdown caused me to miss two appointments at Hull Royal Infirmary at too short notice for them to be offered to others.

Therefore I would appreciate it if you could write to the appropriate authorities requesting written clarification as to why they are unable to provide an appropriate chair for my specific needs and I give you my express permission to discuss my case in whatever personal detail that is necessary.

Here’s hoping!

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About dermotrathbone

Writer and co author "Through Red Lenses". Activist Unite the Union, Save Our NHS Hull. Fan of Yorkshire County Cricket Club, Hull FC, Munster and Ireland Rugby. Views are mine alone and may not reflect the organisations concerned.

Discussion

One thought on ““Not Fit for Purpose”: One Man And His Wheelchair

  1. You should also let him know that when you have spoken with the department they can give no reason why it won’t get sorted (other than budgets no doubt) and also that you can not speak with the manager

    Posted by Richard | February 2, 2007, 4:24 pm

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