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Thursday, 16 May 2013

The ATOS and Carers Roller coaster ride...

Hi guys, we're still struggling but things are a little better!

We're still on the roller coaster ride we call caring!
It's so very hard to plan things as from one day to the next, sometimes one hour to the next too as it's hard to predict just how things will be!

Coo's seizures are still problematic, the hassles with ATOS have not helped either and the seizures continue to increase. It's so very difficult to pin-point, if it's stress or yet another infection that's the cause of the latest increase in activity so we're still riding that roller-coaster for now!
We're having yet more bloods done this week, to try and rule out infection...and if it is stress?
Well, we'll try and keep things as calm as we can and hope the people at ATOS do their job and this latest onslaught ends sooner rather than later!

Why do they need to assess severly disabled people in this way?
Wouldn't it be more effective for people like Coo, if ATOS would just contact the hospital and get the information direct from the Neurologist? Take the time and care, to ask the guy who assesses Coo's health and medical condition every few months and really knows how devastating an impact Epilepsy has had on every aspect of his life?
Wouldn't that be so much kinder, less stressful and less invasive too and probably more effective in the long run?
You'd think so wouldn't you!
Does it really make sense to send someone like Coo to a medical to see if he can walk, talk and write his name? - I really don't think so!
Some day this will change and the sooner the better!
I hope you're ok where you are,
Keep strong,
Maz x

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