Hi, my name is SooziChameleone! — Scope | Disability forum
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Hi, my name is SooziChameleone!

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SooziChameleone
SooziChameleone Community member Posts: 5 Listener
in Start here and say hello!
Hi everyone! I have joined your community because I have a condition called EDS and, after having Hypermobility my whole life, the condition has now worsened and I am in the process of seeing a specialist, have nerve painkillers to take and am sorting out my benefits. I am confident that it will all be a smooth process, as I am already in receipt of UC and PIP. These were awarded to me based on mental health issues that prevented me from working most of last year but I returned in December and happily worked until I had to stop this week due to being physically incapable. So my understanding is that I will be reassessed and have my benefits adjusted based on mobility issues that have caused me to have to stop working such a physical job (I'm a Mental Health Support Worker for the NHS).

I'm really pleased to join this community and I welcome any and all advice that anyone has for my situation! I have a great understanding of how the assessment process works, but any fellow Zebras on here I'd love to learn what you do to manage your pain and mobility issues!
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  • poppy123456
    poppy123456 Community member Posts: 54,222 Disability Gamechanger
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    HI and welcome,

    PIP isn't awarded based on a diagnosis, it's how those conditions affect your ability to carry out daily activity based on the PIP descriptors.

    As you're already claiming PIP if it's a change of circumstances you're talking about then for this you need to have had those conditions for at least 3 months and expect them to last at least a further 9 months. A worsening of condition doesn't automatically mean you'll score more points for a higher award.

    Reporting a change of circumstances means more forms will be sent to you, which you'll need to fill out and return with all your supporting relevant evidence. Another face to face assessment is most likely needed because most people have them. You risk losing everything you already have by reporting those changes. Of course the award could also stay the same or be increased too. Do be aware that PIP isn't about not being able to work.

    For your UC then if you're not already claiming limited capability for work then you can start this process off by sending in fit notes from your GP and you'll eventually be referred for a work capability assessment. You'll be sent forms to fill in and return with your evidence. A face to face assessment is most likely because most people have them for this. Once a decision's been made it will either be LCWRA, LCW or fit for work. This assessment is about your ability to do any type of work and not just the work that you used to do because it's about the work you can do and not the work you can't do.

    Hope this helps.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
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  • SooziChameleone
    SooziChameleone Community member Posts: 5 Listener
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    Hi Poppy, I know all of this and specifically state in my post, what kind of advice etc I was looking for, and that the advice I seek is unrelated to my claim and related to the condition I have hd all of my life and how others with it, manage it. We all experience our conditions in a way that is unique to us as we are all individuals but I have already received great advice from one of the few friends of mine who also have EDS and so I thought I would cast the net wider and seek out advice via this platform. However, thanks for taking the time to post this anyway!
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  • poppy123456
    poppy123456 Community member Posts: 54,222 Disability Gamechanger
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    One of the things you stated was this " So my understanding is that I will be reassessed and have my benefits adjusted based on mobility issues " which isn't exactly correct, which is the reason i gave you the advice. I'm sorry it's not the advice you were looking for.

    I'm sure one of our other members will give you some advice regarding your EDS.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
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  • SooziChameleone
    SooziChameleone Community member Posts: 5 Listener
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    It may not he exactly correct, but it essentially is correct. My PIP will be adjusted now that I have severe mobility issues. I don't know what isn't correct about that, apart from the timeframes that you pointed out, which I did know. 

    No need to apologise, I was highlighting what sort of advice I requested in my original post. It was helpful of you to provide further information, in case I didn't know everything that you brought to my attention.

    Yes, it was a Google search re. EDS that led me to here as someone else was discussing it, and so I thought I may as well join ?
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  • poppy123456
    poppy123456 Community member Posts: 54,222 Disability Gamechanger
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    SooziChameleone said:
    It may not he exactly correct, but it essentially is correct. My PIP will be adjusted now that I have severe mobility issues. I don't know what isn't correct about that, apart from the timeframes that you pointed out, which I did know. 

    If you've reported a worsening of condition then yes, it's possible that you'll be awarded a higher award but there's no guarantee that will happen, which was why i pointed that out to you.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
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  • SooziChameleone
    SooziChameleone Community member Posts: 5 Listener
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    Yes, I understand the purpose of what you said, but I have solid reasoning to believe that my PIP amount will change/increase. The solid reasoning is exemplified by many things, such as: I literally need a wheelchair and am paying a friend to help me with basic household tasks lol. Again, thanks for your information!
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  • chiarieds
    chiarieds Community member Posts: 16,103 Disability Gamechanger
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    Hi @SooziChameleone - Welcome to the community. I'm a retired Superintendent Physiotherapist & also have hEDS + occipitoatlantoaxial hypermobility & complex Chiari 1 Malformation. Unfortunately my neuropathic pain is greater than that due to my hypermobility. As you say we're all affected differently, so what may work for one person will not necessarily work for another. So, like my friend Poppy, I doubt I'd be able to help you.
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  • SooziChameleone
    SooziChameleone Community member Posts: 5 Listener
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    Hi! Nice to meet you. Thanks for your contribution anyway! My friend has EDS (possibly vascular, it's being queried as she believes it has recently changed) and she has been a fantastic source of help and information. Things like gentle yoga and swimming are things that she does that I'll also be taking up to support my mobility and improve my strength, and so it's things like this that I would like to hear from others (activities or strategies they undertake to help support and manage their EDS). Looking forward to hearing from others, I'm always keen to learn and receive advice in order to become further informed!
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