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Help Please, Condition has worsened.

Carl_abc Member Posts: 11 Connected
Hi all, I'd like to thank anyone who reads this in advance for your time.

So my condition has worsened quite substantially since my last PIP review, but I'm reluctant to inform them about it as I have had a (few) bad experience (s) with Atos and PIP in general.

I have Fibromyalgia, Hypermobile Ehlers Danlos, excruciating lower back pain, sciatica, Chronic anxiety and Bipolar. So my ability to complete the PIP descriptors safely etc. Is limited. 

Is there someone/somewhere that could help me out with the process this time around? As PIP reduced me down last time from Enhance Daily Living to standard, and have completely avoided giving me mobility full stop.

Anyone that can help me out with the process will be much appreciated. 

I'm in Tyne and Wear if there's a service anyone knows of that may help?

Ps. tried Citizens Advice before - I can't handle their tiny waiting room where I live - due to my anxiety. Also tried B&W PIP Docs before.


  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    Hi @Carl_abc -  I'm sorry I don't have any answers for you, but I hope one of our members may be better able to help you with other resources in your area. @poppy123456 might you help, please?

    I have the hypermobile type of Ehlers-Danlos Syndrome too; lower back pain + neurological pain...not much fun! Just wanted to let you know that I understand some of the many problems you're facing.
  • poppy123456
    poppy123456 Member Posts: 28,477 Disability Gamechanger

    Have you looked at the PIP descriptors to see if you could score more points for a higher award? A worsening of condition doesn’t automatically mean you’ll be entitled to more points. 

    You’ll also be sent more forms to fill in and most likely have to attend a face to face assessment. Evidence will also need to be sent with the form to support your claim. 

    You do risk losing everything you already have but of course your award could also remain the same or increase. 

    No one on an Internet forum can help you fill out the forms, we can only advise you. When filling them out you should put as much information as possible about how your conditions affect you. Adding 2-3 real life examples of what happened the last time you attempted that activity for each descriptor that applies to you. 

    There are are a few welfare rights advice centres available in the Tyne and Wear area but I’m unable to put a link because I’m using my phone to advise you. Due to a very recent house move my computer isn’t yet up and running. 

    Please think carefully before reporting a worsening of condition. 
  • Carl_abc
    Carl_abc Member Posts: 11 Connected
    Thanks @chiarieds, I never thought I'd be like this at 26, It's a huge contrast to 8 Years or so ago where I was regional amateur boxing champion and as fit as a fiddle. 

    Thanks also @poppy123456, I thought I scored more on the descriptors on my last review, but more so now - now my physical mobility has taken a battering and can't walk more than a few steps without the stabbing pain in my lower back and legs - I avoid going out most days because I'm in agony. 

    My partner has to come with me everywhere due to anxiety - I can't go out without someone as I'm prone to anxiety attacks and outbursts of aggression.

    I've been left high and dry by the NHS - GP has been all but helpful until recently where I've started seeing a new GP/ Pain specialist.

    I've managed to find a few welfare rights places, I'm due to call them this morning. I am aware that notification of worsened condition can result in a reduction of award, which is why I'll be looking for some help with the forms to maximize my chances of putting a true picture across to the DWP.

    Thanks again ?
  • poppy123456
    poppy123456 Member Posts: 28,477 Disability Gamechanger
    Despite finding some welfare rights in your area I must admit that the best person to put across how your conditions affect you is yourself. There’s no specific wording to use when filling out the form, just tell it how it is. 

    The problem I found in the past with agencies is that you can’t tell them everything single thing about your conditions in a short space of time. They will still only know the basics. Having had help many times in the past for filling out forms only the basic information was used. 

    During my my daughters last PIP review I fill out her forms myself, told them everything she needs support with and why she needs it. Gave 2 real life examples for each descriptor that applies to her. Sent relevant evidence with the form to support her claim that specifically stated the things she needs support with. I used extra sheets of paper which were typed out so easier to read. 

    Based on all of that she had a paper based assessment and her award remained the same, Enhanced for both parts. I know for certain that she wouldn’t have had that if I had got help from an agency to fill out the form. 

    Future appointment letters aren’t classed as evidence and letters from a GP aren’t the best to send because they very rarely know exactly how your conditions affect you against the descriptors. 

    Good of luck if you do go ahead and report the changes and do let us know the outcome. If you have any questions along the way please just ask and I’m sure someone here will be happy to advise you. 


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