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Thread: PIP assessment on Tuesday: Help Please!

  1. #1

    Talking PIP assessment on Tuesday: Help Please!

    Hi, this is my first post, I have my PIP assessment with much loved ATOS on Tuesday, and am looking for advice.

    To give a background into my condition, I have Narcolepsy and Cataplexy along with Non Epileptic Seizures. I can't walk far around the house due to fatigue all the time (even though I'm on Modafinil for fatigue) and I also have Cataplectic attacks when I feel an emotion. E.g I laugh at tv and my head will sway from side to side and my jaw will slacken and neck go forward. To complicate matters the cataplexy often leads into seizures (absence seizures) that can last upto 40 minutes (nearly 3 to 5), with this my I drop to the ground, look catatonic and cannot be roused. My medication is tightly controlled by my partner as I often forget or double up on it, I need assistance into the shower, watched while I cook (when I can) and pushed in a wheelchair when we go out. I can't answer the door because the fright from the bell or knock sends me under.

    The problem I've got is, I got signed off work in February, applied for PIP in May and from then until October some symptoms have mildly improved (my sleep cycle is better) but others have deteriorated (I can no longer walk without falling, or even climb a set of stairs and I can't propel a wheelchair). Some of these things are not written in the how your disability affects you form, and I found out from my GP ATOS haven't approached him for a report on my condition. Also, my non-epileptic seizures were not diagnosed in May but I did describe these symptoms as being part of my Narcolepsy (cosmetically they look similar).

    How do I approach my assessment with these changes, do I just state them in the assessment or do I get my partner to write something out? My doctor said ATOS should approach them and he is on my side. I don't want them to dismiss certain things due it not being on the form or not having enough information.

    Thanks in advance for any help

  2. #2
    It's probably wise to prepare a brief history of the changes in your condition since three months before the date you applied for PIP, noting how those changes affect your ability to carry out the PIP activities. Make sure you keep a copy, as the copy you hand to the assessor will be sent to DWP.

    It's important to remember that PIP is based on the effect your condition has on your ability to perform the PIP activities.


    There's details of my PIP assessment and links to details of three other people's assessments in the sticky PIP thread (coloured text in this forum are clickable links). I commend that thread more widely to you.

  3. #3
    Thanks Flymo, I'm going to make sure I avoid the whole 'I have narcolepsy so I should get PIP' argument and it'll be 'as part of my narcolepsy I can't walk 20 metres due to fatigue without getting breathless and needing to rest for over an hour'. my partner is coming with me but I'd like my mum as well, am I allowed to take more than one person into the assessment?

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