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Living With Cerebella Ataxia

Cerebella Ataxia Treatment Appeal. “From Despair To Where?”

May 29th Despair. The Primary “Care” Trust pulled the plug on my treatment for Cerebella Ataxia which was due to begin on 4th June at the Royal London Hospital in Whitechapel.

What followed defies belief as I had a round of just surreal conversations where I am basically begging them to give me a chance to save, and hopefully improve my quality of life.

This should not happen. Period. By last night I was I the darkest of dark places. No word on an appeal from Prof GG in London. A frankly distressing discussion of the consequences with my GP, and to cap it all a shambolic appointment at the Eye Hospital where they had failed to send out the appropriate paperwork for my being registered as fully blind, as a pose to chronically visually impaired.

Mr. Stewart was away, and his stand in could barely speak English. What are you meant to do?

Me:

Can you write to the PCT regarding my cancelled treatment?

So Called Doctor

: No treatment for nystagmus.

Me:

Yes, I appreciate that but if I have the blood plasma treatment then we can address that issue.

Him:

No treatment for nystagmus.

Me: Sure. I’m on about the blood plasma therapy.

Him:

No treatment for nystagmus.

It finally occurs to me that he has no idea what I’m saying and is repeating the same thing over and over.

Me: I’m visiting the Lost City of Atlantis tonight for a sojourn with 40 Vestal Virgins. You up for it?

Him

: No treatment for nystagmus.

I made that last bit up, by the way. But you get the picture?

Today. Where?

I receive a copy of GG’s letter to the trust appealing for a re think.

It was typed OVER A WEEK AGO, but he can’t sign it as he’s at a Conference.

Ding dang dong! His Secretary reminds me of “Computer Says No” in Little Britain.

Blah blah blah. “The alternative to IVIg is repeated courses of plasma exchange. I personally would like to avoid going this route because of the complications associated with placement of a central line, the effect of risk due to his generalised immunosuppression and the acute complications of plasma exchange. In addition plasma exchange is no cheaper than intravenous immunoglobulin.

I would appreciate it if you could reconsider my application to give Mr Rathbone a therapeutic trial of IVIg.

Mr Rathbone is desperate to have some form of therapy. His condition continues to progress relentlessly and he is becoming more and more disabled. The aim would be to try and reverse some of his ataxia so that he can remain functionally independent.”

They can’t argue with that, can they?

To Patricia Hewitt.

Yes, the NHS is back in the black, but I urge you to reflect of the human cost of this. My case is not, can not be isolated. So while you trot out the bullshit, remember there is a price to pay, and it‘s real, live people that are affected.

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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 “Cerebella Ataxia Treatment Appeal. “From Despair To Where?”

  1. I don’t know how you keep it all together sometimes. What a useless comment but you know what I mean. You’ve got an amazing strength and reserves of power to go to battle with these people when at times you must feel like you’re banging your head against a brick wall. It serves as a reminder to me, especially when I think about some people I know who freak out at the tiniest hint of trouble and have actually no idea what ‘problems’ really are. Good luck with it all. xxx

    Posted by rebecca | June 19, 2007, 12:49 pm

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