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Changes to my condition

kitkit Member Posts: 24 Connected
edited January 2020 in PIP, DLA and AA
Hi I wonder if anyone can help, I have fibromyalgia, copd, arthritis, osteoporosis, reynards and CFS I now have trouble with my right hand numbness and waiting for ulnar nerve decompression and have trouble with left hand from trapped nerves from the c1 to c6. I hot awarded higher rate mobility but standard care rate in 2018 and my review is not due till next year. The thing is I am really struggling with my hands more than ever. I am scared to put this forward to pip as other sites say I might lose my high rate mobility and I couldn't do without my car as that is my legs almost to me. Please could anyone give me good advise.
Kind regards Kit

Replies

  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    HI,

    Reporting a change of circumstances is always risky because they send you more forms to fill in and another face to face assessment is most likely. It's possible that you could lose everything you already have as well as have your award increased, decreased or it could remain the same.

    A worsening of condition doesn't mean you'll automatically score more points for a higher award and no one on an internet forum can tell you if you'll be entitled to a higher award. For this you'll need to get some face to face advice from an agency near you.

    Hope this helps.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • CressidaCressida Member Posts: 681 Pioneering
    edited January 2020
    @kit I think you need to look at the amount of money involved, difference between basic and enhanced (then multiply by the number of months left on your existing claim) and then consider is it worth the risk of losing your mobility. Like @poppy123456 has pointed out a worsening condition doesn't mean you will score more points. Just my opinion though. I'm not sure if the fact that you are waiting for a procedure would make any difference to the claim? Others are more knowledgeable than me about the system but I was under the impression that if you were waiting for treatment that may improve your condition they may look at your existing points? 

    Have you tried the hot wax baths for your hands? That sometimes helps me when my hands are particularly bad or clawed. 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    One other thing to point out which i did forget. You must have also had the worsening of condition for at least 3 months and expect it to last at least a further 9 months.

    Future appointments are not taken into consideration. Once you do have that operation then usually they only do those if they expect your condition to improve.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Sorry to hear you are struggling with your hands more @kit! Is this something you have brought up with a doctor? I hope the advice by others has been helpful.
    Community Partner
    Scope

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  • kitkit Member Posts: 24 Connected
    Thank yous all so much for your advice . Yes my Dr said to report changes but I stressed to her that I was worried. I think I will just leave it till my review next year I honestly dont think I could go through all that stress again. Many thanks to all and kind wishes x Kit
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Just incase you didn't know, if your current award was given by the DWP then reviews are now taking place 6 months before the award is due to end and not 1 year before.

    If you were awarded by the Tribunal then DWP will contact you about 14 weeks before the award is due to end.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • kitkit Member Posts: 24 Connected
    Thank you Poppy. I have just been to see the consultant and the only way he can stop the tingling in my left hand is to perform an Anterior cervical discectomy, he advised against this because of my other medical conditions. So it looks like my thumb and first 2 finger will remain to tingle for the rest of my life. It just never seems to ease. I also have trouble with my right hand but he can perform ulnar nerve decompression on that to relieve the tingling and knocking things over. I'm totally at a loss what to do for the best.  Kind regards xx Kit 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    No problem. It's your decision what you do but as i advised, a worsening of condition doesn't mean you'll be awarded more points for a higher award.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • kitkit Member Posts: 24 Connected
    Yes I thought the same so just going to leave it till review 
  • Gwendoline1Gwendoline1 Member Posts: 226 Pioneering
    Hiya kit, I know you’ve decided to wait until your review and I agree totally in what Cressida and poppy123456 have written.
    Why I felt I needed to reply is this, if somewhere nagging instead you, you felt you had changed your mind and you were going to report a change this is my experience when you do.
    I had been awarded standard/standard for 3 years but within less than a year my health took a dip and my needs changed a lot. I decided to report the changes and did all the necessary paper work ( it was a fantastic person in CAB that did it for me ) and it was sent off.
    I don’t want to put anyone off reporting changes, that would be totally wrong of me and out of order so to speak.
    Im just trying to word correctly how I felt from the time the form was posted until I knew the outcome. The only way of explaining is that I personally would never do that again.
    I received enhanced/enhanced for 10 years. 
    Why would I been so negative you may say with the outcome I received.
    I kept fearing the worst, would it be taken off, all the ‘ what ifs’ .
    If I had to repeat my past I’d have waited for my review, 7 months of what ifs’ is mind blowing.
    Everyone is different, for me it was very hard and an experience I’d never want to repeat.
    Good luck and all the best, I hope this post as been of some kind of help😀😀


  • kitkit Member Posts: 24 Connected
    This is what scares me Gwen, it's the what ifs. I have anxiety problems as well and I think this would add to that a lot. The only thing is I now have to pay for more help with my hands being the way they are but dont have the income to do it comfortably so I find I need to skip certain help . Its certainly a hard one, and on the other hand they state you must report changes, but I'm honestly scared to, so will I be penalised for doing that as well. Thank you Gwen for getting back to me and best wishes xx Kit
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    The words "all changes must be reported" is very misleading especially for PIP because a worsening of condition doesn't mean you'll score more points as i advised. If you decide not to go ahead and report those changes then no, you won't be penalised.

    For support/help have you referred yourself for a needs assessment? if not, then you can do that here, https://www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/getting-a-needs-assessment/

    There maybe some help available for you once that assessment has taken place.

    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • Gwendoline1Gwendoline1 Member Posts: 226 Pioneering
    Hiya kit
    Im so glad poppy123456 as replied to you, I have no knowledge regarding giving advice to anyone, only experiences I’ve been through.
    One of my conditions also affect my hands too, not much fun.
    Id be lying to misled anyone by saying it was a breeze, as I’ve explained it was far from that.
    The extra money as made such a difference.
    Id never want to put you or anyone else off reporting a change but the strength you need ‘ mentally’ is exhausting and frightening.
    Another person may not have felt the way I did and may share their positive experiences.
    I don’t want to influence you in anyway and go with what you feel is right.
    Again good luck 😀😀
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