positive or negative experience claiming benefits and why ? - Page 4 — Scope | Disability forum
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positive or negative experience claiming benefits and why ?

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  • [Deleted User]
    [Deleted User] Posts: 587 Listener
    @justdon agreed, my Dad was a very very funny Irish man, some of the stuff he used to come out with literally made us cry with laughter. Anyway, I'm going to shut up as the thread is about positive and negative benefit experiences and not about me being funny lol ;) 
  • [Deleted User]
    [Deleted User] Posts: 231 Pioneering
    The user and all related content has been deleted.
  • Jurph
    Jurph Community member Posts: 369 Pioneering
    I'm one of those that had good and bad.

    I'd been struggling for a number of years, seen many specialist but as I live with my parents, I didn't think I'd qualify for anything. I had previously had an NHS low income certificate to help with prescriptions/glasses/dentists as although I was fed, clothed and housed, my parents just didn't gave the money to help with the extras.

    When I was diagnosed with Fibromyalgia, I realised that I was unlikely to improve enough to hold down employment. After a few months of soul searching and investigations, I applied for ESA and PIP. 

    I filled out both sets of forms honestly. If I didn't need help, I said so. If it was only some of the time, I said so. I didn't know anything about 'descriptors' or anything like that.

    My PIP f2f came first, it was a month after I applied. She was lovely. She didn't push the physical assessment and allowed me to explain.

    Boy, was I wrong. The decision letter came 2 weeks later - a big fat 0 points. An awful lot of assumptions were made. I drive therefore I can bathe. Nothing that I'd now consider a lie but I couldn't believe it. Every single reason for refusal was 'is less than 50% of the time'.

    I came on here and did some research about how to do a Mandatory Reconsideration. I called up and asked for the assessor's report, but it never came! I had to send in my MR ysing just the decision letter so I didn't miss the deadline. I had someone at the CAB go over it before I sent it,

    2 weeks after I sent in my MR (and 3 calls later), I got the assessor's report. Helpful! My MR came back - still 0 points. They didn't reference my evidence or take into account that I had 5/6 appointments coming up with specialists (9 month wait for Hydrotherapy!)

    I can on here to ask advice and decide to appeal. I had nothing to lose so felt it was worth it. I contacted a local advocate who was brilliant. She thought my appeal was good and didn't change anything, she didn't actually do much but the moral support was invaluable.

    When I got my bundle, the decision maker had made the decision the day BEFORE they received the information they requested from my GP.

    The tribunal was scary and exhausting but after hearing my evidence, they awarded me standard care and enhanced mobility. They wrote a strongly worded letter to the DWP about making decisions before they receive the evidence THEY requested. The whole thing took 18 months!

    I had my first ESA f2f before I received my PIP decision (I'm thankful for that!) They put me straight in the Support Group. I was reassessed 16 months later and was again put in the Support Group.

    Interestingly, I wrote to my MP about the difference in assessments to be given the 'they're different benefits' standard response only to find out a month later that they were support a single assessment! Go figure!

    So yes, one awful, one pretty good!
  • [Deleted User]
    [Deleted User] Posts: 231 Pioneering
    The user and all related content has been deleted.
  • WhileIBreathIHope
    WhileIBreathIHope Posts: 216 Pioneering
    @justdon
    @Jurph

    My concern is the lead times and a numbers game tapering off those who managed to see it to conclusion. 

    My personal opinion again is a disability support person or charity the only way to get through the nightmare. 

    Tomorrow I have another hospital appointment about my walking and off to work later. 

    I'd be interested in the fibromyalgia descriptors, how would you say one day I can do xyz and next I can't think straight and joints on fire. 
  • chiarieds
    chiarieds Community member Posts: 16,007 Disability Gamechanger
    Hi @WhileIBreathIHope - I don't know if you've looked on the internet for information on 'Fibro fog;' my apologies if you have. See for example: https://www.arthritis.org/about-arthritis/types/fibromyalgia/articles/fibro-fog.php My thought is perhaps some of the descriptions there will echo with how this makes you feel & be useful in thinking how to write about it. And about the joint pain, saying you have a burning pain in whichever joints are affected should be fairly easily understood. Then add that you feel like that probably 4/5/6 days a week, whichever it is for you.
    There may be much better sites to look at, so you could try & few.

  • WhileIBreathIHope
    WhileIBreathIHope Posts: 216 Pioneering
    chiarieds said:
    Hi @WhileIBreathIHope - I don't know if you've looked on the internet for information on 'Fibro fog;' my apologies if you have. See for example: https://www.arthritis.org/about-arthritis/types/fibromyalgia/articles/fibro-fog.php My thought is perhaps some of the descriptions there will echo with how this makes you feel & be useful in thinking how to write about it. And about the joint pain, saying you have a burning pain in whichever joints are affected should be fairly easily understood. Then add that you feel like that probably 4/5/6 days a week, whichever it is for you.
    There may be much better sites to look at, so you could try & few.

    I’ve a diagnosis of fibromyalgia and yes I have got stuck after a hospital appointment I couldn’t think straight several years ago.
    My symptoms better, but I still get days I go out to work feeling like I have been on a bar crawl and beaten up.

    I’d like to assure people fibromyalgia and pain are real, I work as much as I can and not a malingerer- nor am I camped out on benefits as the last person I tried to explain to said.

    stay frosty
  • poppy123456
    poppy123456 Community member Posts: 53,338 Disability Gamechanger
    PIP isn't about a diagnosis, it's how those conditions affect your ability to carry out daily activity based on the PIP descriptors. Yes, i fully understand what fibro is because i have it myself. as well as other conditions.

    It's how your conditions affect you at least 50% of the time over a 12 month period. You need to explain in detail how your conditions affect you. Giving a couple of real life examples of what happened the last time you attempted that activity for each descriptor that applies to you.

    Do bare in mind that even though people do work and claim PIP, if the work you do contradicts the reasons for your claim then this can go against you when a decision's made.
    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.
  • WhileIBreathIHope
    WhileIBreathIHope Posts: 216 Pioneering
    PIP isn't about a diagnosis, it's how those conditions affect your ability to carry out daily activity based on the PIP descriptors. Yes, i fully understand what fibro is because i have it myself. as well as other conditions.

    It's how your conditions affect you at least 50% of the time over a 12 month period. You need to explain in detail how your conditions affect you. Giving a couple of real life examples of what happened the last time you attempted that activity for each descriptor that applies to you.

    Do bare in mind that even though people do work and claim PIP, if the work you do contradicts the reasons for your claim then this can go against you when a decision's made.
    I’d rather set fire to myself or a DWP office than be manipulated by DWP again and caged like an animal fearful any efforts to better my situation-with fact if you want to do any courses or work then it is used against you.
    I tried for years with sun shine smiles and we will look into it- life is a lemon I want my money back

    I ‘d love a more appropriately suitable job, I’m all ears for this nirvana of self employed job or hello boss stuck on a toilet, may be in this evening.

    Notice my council for direct payments in the BBC news for wrong doing- the comments section says it all. A scandalous situation others and myself suffered.
    We are not going to get justice and nobody will be accountable.

    so I will have to suck it up and struggle till I drop.
  • chiarieds
    chiarieds Community member Posts: 16,007 Disability Gamechanger
    @WhileIBreathIHope - Please know, I completely believe you. I have some understanding about fibromyalgia, as many people with one of my disorders (Chiari 1 Malformation) were often mis-diagnosed with fibro, so I read a lot about it, admittedly several years ago. I have chronic pain, so I know how badly it can affect a person, & how hard it is to live with.
    I feel everyone here is completely genuine & wish as justdon has mentioned that integrity would shine through.
    I'm only just beginning to realise how difficult it is for some here to complete the necessary PIP forms. The more people say, I hope the better we will be able to understand each other as I feel this very important.....& a way forward, so that people get the help they need.....both in knowing they're supported here & in completing the forms.
  • WhileIBreathIHope
    WhileIBreathIHope Posts: 216 Pioneering
    chiarieds said:
    @WhileIBreathIHope - Please know, I completely believe you. I have some understanding about fibromyalgia, as many people with one of my disorders (Chiari 1 Malformation) were often mis-diagnosed with fibro, so I read a lot about it, admittedly several years ago. I have chronic pain, so I know how badly it can affect a person, & how hard it is to live with.
    I feel everyone here is completely genuine & wish as justdon has mentioned that integrity would shine through.
    I'm only just beginning to realise how difficult it is for some here to complete the necessary PIP forms. The more people say, I hope the better we will be able to understand each other as I feel this very important.....& a way forward, so that people get the help they need.....both in knowing they're supported here & in completing the forms.
    I agree that frustration of situation should not be used to tear chunks out of each other, just hope that people see as a loose knitted group of individuals we are being targeted in the most narcissistic and awful way by a systematic denial of disability.

    thanks for your input ?
  • Jurph
    Jurph Community member Posts: 369 Pioneering
    My tribunal did mention Fibromyalgia when I sat down. They reassured me that they deal with a lot of people with Fibromyalgia. 

    Whether that means a lot are denied or that there's more understanding, I'm not sure.

    However, I do think that as wonderful as places like this are - the balance will always be to the negative. People don't sign up to these message boards to say claiming PIP was easy.

    I think most people are like me and come here for help when it goes wrong. Therefore, the majority of stories here will be negative.

Brightness

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