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Thread: Friederchs ataxia

  1. #11
    I told them how my condition affects me on a daily basis but the assessor seemed more interested in observing me being able to itch my lower leg and like other comments she made a point of mentioning I was well nourished and well groomed maybe I shouldn't of showered or washed my hair thanks for advice I'll sit and wait for outcome of reconsideration

  2. #12
    Well my reconsideration was unsuccessful telephoned today I was told they would wait for new evidence for 1 month which they haven't. Had call from DM on 27th may letter stating still not entitled 3rd June 5 working days it took.
    Received letter today from consultant to forward to DWP the DM says basically no good as doesn't say what I can/can't do even though it states my balance,coordination and mobilility is severely impaired and extremely limited. Also after receiving atos report there was a lot of mistakes made mentioned this,he wasn't interested what atos write that is what we go on if mistakes have been made I have to go to atos, but was interested when told him that on day of my assessment the computers were down and she wrote everything down on paper and said she would transfer onto computer when back up and running maybe things could of been missed.
    I have been told an appeal is next I don't know if I have the energy.

  3. #13
    Hi, from my experience you cannot say or do anything 'positive' an example; I said while sitting on my bed I walk up a near by set of draws I can then get the start of my sock over my toes, I role on the bed to pull them up! If I don't do this I either fall forward or I have to await help. The report said 'can dress unaided'? Two other big mistakes I made was to say sometimes I have better days - this was taken as the norm and that I amend and adapt, now it's just 'can't do it'

    Again my experience says that they expect you to be telling lies, probably get this a lot. So when you say 18 they automatically amend it to suit lie tellers. During my first PIP f2f I had an event (as I call it) during the first of three breath tests my vascular system went into spasm and I became breathless, my body went white as the ischemia came on and my core temperature went down, I got confused and disorientated and the assessor refused to do the other tests and recorded the episode fully. The report simply said normal?

    I have a letter that says no cure, no surgery, but the report said 'may improve' yes it's a farce but what we have to do is learn and adjust to meet this poor mans excuse of fair play. I am statistically one of three males in the UK to have Small Vessel Disease (usually female) and regularly meet health professional who haven't a clue, why should they when the needs of the many out weigh the needs of the few but all I ask is if your going to judge me at least get some knowledge you owe it to yourself as well as to me!

    I got std mobility only and took it to tribunal who took it all off me? My next f2f is next week, let's see what uneducated (in my disease) dipstick they send. If they sent someone who used to working or assessing the elderly then I may be in with a chance because a lot of the symptoms are inline with 80 year olds! I'm only 57.

  4. #14
    Thanks for reply, today is my daughters 16th a day I didn't think I would see as this condition I have statistics say your life expectancy after symptoms start maybe upto 20 years I started 15 years ago. I have complained to atos re;assessment wheather IT does any good probably not.anyway not going to let them ruin a special day

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