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Thread: UC housing element

  1. #11
    Senior Member nukecad's Avatar
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    LOL, thanks Pau I've put it right.

    My excuse is that it was 4 in the morning when I posted that.
    I don't know everything. - But I'm good at searching for, and finding, stuff.

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  2. #12
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    No probs nukecad, hope it’s not insomnia, I suffer with that and it’s terrible .

  3. #13
    Senior Member nukecad's Avatar
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    Quote Originally Posted by Pau View Post
    hope it’s not insomnia, I suffer with that and it’s terrible .
    Nope it's the exact opposite - Idiopathic hypersomnia, a subset of Hypersomnolence.
    https://en.wikipedia.org/wiki/Idiopathic_hypersomnia

    My usual is somewhere between 12 to 20 hours a day conked out, so depending on just how long it is then when I'm awake it can be at odd times.

    With me it's thought to be a result of a post-measles encephalitis I had as an infant. (Along with my epilepsy and migranes at different stages of my life).

    Like most neurological conditions it affects different people in different ways.

    Myself I fall asleep easily and once asleep I'm asleep for long times, and nothing can wake me. (So it classes as ivoluntary unconcious).
    From overnight hospital monitoring I also go into REM sleep within a couple of minutes, rather than the usual 90 mins after falling asleep.
    I've once had someone jab me in the thigh with a pin to try and wake me, they say I didn't even react.

    And that's why I can't go to work anymore, even working online employers don't like employees who can't work set hours. (and can't even ring to say they won't be working that day).

    So I am LCW, 15 points for 'unconciousness during normal waking hours' - but not LCWRA/Support Group because there is no 'unconciousness' descriptor at all for LCWRA, or for PIP come to that.
    (And you can believe that I had to fight at first to even get LCW awarded).

    PS. I often get people saying 'I wish I could sleep a long time like you do'.
    If I can be bothered I'll point out that they should think before opening their mouths.
    They definitely wouldn't like to be unable to hold a job, unable to keep appointments not even 'I'll see you at the ### later', unable to eat at regular meal times, and so on, you can't really plan anything when you can't be sure whether you'll be awake or not.

    (PS. My record is 4-1/2 days sparked out, and yes I was dehydrated and hungry when I finally woke, and the bed was soiled. As an old member here, Flymo, once said when we were talking about it - with many disabilities, shit happens).
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  4. #14
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    Damn , that’s sounds terrible. I can’t believe you had to fight for LCW , , surely this and the epilepsy would mean you get LCWRA. 4 1/2 days of sleep, bloody hell that unbelievable. I’ve had 4 of those overnight sleep studies , unlike you though I found it even more impossible to sleep with 50 wires attached to my head n heart .

  5. #15
    Senior Member nukecad's Avatar
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    Quote Originally Posted by Pau View Post
    surely this and the epilepsy would mean you get LCWRA.
    You'd think so wouldn't you? - And so usually do the jobcentre staff, (which shows how much they know), and so do some benefits advisors. - But the legislation isn't written like that.

    And TBH I don't have epilepsy much now, (still enough to get a bus pass though), but that wouldn't matter anyway.

    LCWRA, and PIP, have no descriptors at all for 'unconsciousness', they don't even consider it on it's own.

    With LCW/LCWRA that's because of the intention of the WCA groups, it's set out in their names.
    Not having "Consciousness during waking moments" at least once a week (LCW Descriptor 10a) will mean that you have 15 points so limited capability for work.
    But you are not unconscious all the time, (you'd be in hospital if you were), so you can do Work Related Activites while conscious, so there is no LCWRA descriptor for it.

    With PIP it's just a question of if you need care/support or not, not why you need that care/support. The 'why' only supports the 'need'.

    Epileptics (and narcoleptics) can only get LCWRA using the special regs for 'Risk of Harm' - if it's severe enough, no warning of a seizure, etc.
    (Doesn't apply to me, I don't suddenly fall unconscious without any warning).

    Epiliptics (and narcoleptics) can get PIP if they need care or supervision.
    (Doesn't apply to me, when awake I can care for myself, when unconscious there's nothing to care or supervise anyway. As long as I'm conscious for a couple of hours, on most days, then it's considered that I can care for myself).
    Last edited by nukecad; 17-01-22 at 08:28.
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  6. #16
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    I find this shocking nukecad , and the fact you had to fight for LCW too. Surely if there’s a risk you could sleep for days without hearing or feeling anything means you need some kind of support ? What if something was to happen around you (fire? flood? burglary?) .

  7. #17
    Senior Member nukecad's Avatar
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    I had to fight for LCW because it was early days of ESA (2011) and they didn't know what they were doing. OK even less than now.
    Plus I was new to benefits and didn't know it was a battle, so hadn't worded my ESA50 as well as I could have done.

    The DWP decision makers decided that to qualify for that descriptor you had to collapse suddenly, of cours that's not what it says at all and once it got to tribunal, 9 months after I first claimed, the tribunal awarded LCW without even having to talk to me.
    The decision was already typed up and sat on the table in front of my seat when I went into the court.
    (They did talk to me afterwards because not even the doctor on the panel had heard of IH before).

    Lesson learnt, I've always used better wording on ESA50's since and never had another problem (yet).
    Basically I simply changed wherever I had put 'deep unrousable sleep' to 'unconcious/unconciousness', ie. using the same words as the descriptor to make it easy for them.

    And of course I've learned a hell of a lot more about benefits since then.

    As for the rest, you missed out slowly starving to death, heart packing up again, etc.etc. but it doesn't matter - those would be 'unusual events' that are unlikely to happen so not covered by the legislation.

    And being honest/fair if I got awarded LCWRA or PIP the extra money isn't going to make the slightest difference to if any of those could happen, or to the probable outcome if it did.
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  8. #18
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    Ok , I understand that it if the extra wouldn’t make a difference and if you’re ok with the LCW element then why stress yourself out with trying . It’s why I didn’t apply for PIP although I was told many times to as I stood a very good chance . I’m ok with the LCWRA atm whilst I’m in therapy etc. BTW I haven’t heard anything from them since early 2019 . Just hope they leave me be until next year ( when my therapy ends ) .

  9. #19
    Senior Member nukecad's Avatar
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    Quote Originally Posted by Pau View Post
    if the extra wouldn’t make a difference and if you’re ok with the LCW element then why stress yourself out with trying
    I never said I was happy with only being able to get LCW, of course the extra for LCWRA (and PIP) would make a difference.

    But I know myself, and have had it confirmed by other advisors, that I just don't fit the criteria to get any more.
    So unless there's a change in the benefits laws it is what it is.

    (Unless I deliberately lied about things, and I know enough to get away with that, but I'm not that kind of person).
    I don't know everything. - But I'm good at searching for, and finding, stuff.

    Migration from ESA to Universal Credit- Click here for information.

  10. #20
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    But LCW for work means you have the potential to work in the future, so you’re taking steps to look , doesn’t it? Or am I wrong ? If you have a condition where you could potentially sleep for days on end how could you hold down any type of work ? Even part time . Unless of course you found a job where you could work whenever you wanted , highly unlikely though . I just don’t understand the decision making process.

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