PIP, DLA and AA
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Want to give up PIP feel so restricted

atypicalatypical Member Posts: 5 Listener
Hello All,

I think the whole process from start to finish has finally caught up with me.

I have condition that varies with my knee but over 50% of the time it impacts me, great face2face assessor got that.  Wonderful great you may think and so did I.

Now though I feel my first barrier in life is this PIP award, not sure if its the wording, the changes, or the whole process.  Am sitting her I should enjoy this I've got it, but I simply cannot, because well it now feels like a barrier and because of how its worded in the award am like damn can I do that or does that go against PIP??

I am at the stage of saying no take it back because I simply cannot cope with it. I got through the bariers of my disability but can't through this barrier now.

Anyone else feel like this and how have you got over it espically on your better days?

Thanks
Pam

Replies

  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    Hi Pam
    What you are feeling is not uncommon, When you are having a good day you almost feel like a fraud. PIP is awarded to help you lead the best life you can. It recognises that you have some difficulty and an assessor has made the call and agreed. It is not a barrier to prevent you doing things, you don't have to live down to it, rather you should live up to it and make the best use of your life on your good days.

    CR .
    Be all you can be, make  every day count. Namaste
  • atypicalatypical Member Posts: 5 Listener
    Thanks CR

    I thought i would not be alone in how I feel

    I know am not going to be running a 5k anytime soon, but on those good days for me it's always if i bumped into an assessor or DWP now they'd be screaming fraud criminal after me, it be the next day when am just like death they wouldn't see.

    Pam
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    I am pretty useless most mornings, waiting for meds to kick in etc. So when I can hardly  physically move I hang around here and other forums, poking my oar in when I think I can help. That way I hope I am doing something usefull. A shift of focus can often make me feel not so useless for a time
    Be all you can be, make  every day count. Namaste
  • wildlifewildlife Member Posts: 1,314 Pioneering
    @atypical Wow I know exactly how you feel and I probably don't need to say why you feel like this as you've worked it out for yourself and put it into words that most of us will be able to identify with. However it's not you that's caused this so why should you suffer. The fault lies with the system, the actual process of a PIP application causes all sorts of negative emotions to rise to the surface. We ought to have help from Victim Support to recover from the experience it's so bad.
                 I suggest you see it from a different perspective, that it's the PIP process that needs to change not you. So forget what PIP says you can or cannot do. Provided your condition that made you entitled to the benefit doesn't change for the better do all the things you enjoy within the limitations of your physical capability. You have every right to live life whether you're disabled or not. Think of the programmes like DIY SOS where a property is adapted to provide an environment that gives a disabled child the dignity and quality of life they so deserve. No-one then takes their benefit away. So use your PIP to make life more comfortable and to ease your suffering and you won't go far wrong.
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    @typical

    I assume you put on PIP form that you have a minority of good days so why feel guilty?
  • atypicalatypical Member Posts: 5 Listener
    @matilda

    On the form, I described how it is on the bad days, and listed what my doctor told me to do e.g. gentle exercise.

    At the face2face I told the assessor that the questions had been answered on how it is on the majority of days and that was how it impacted me. I told the assessor how I need to choose one activity over the other.

    The award letter does say that
    "Your condition varies so scored on how it is most days."

    I may feel more comfortable when the assessors' report comes through the post, I've requested It but can take awhile.

    If I am still feeling this level of anxiety and worry I'll just give it up the money really helps but it's not worth this level of worry.

    thanks
    Pam
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    @atypical

    PIP is complex, often far from logical and certainly often not applied within the legislation or guidelines.  Not sure even the DWP understand the rules.  If you meet the descriptors then you qualify for PIP.  I would  not overthink it. PIP is not an exact science.

  • DasiydoDasiydo Member Posts: 94 Courageous
    I sick Of PIP haven't come first their was I'll second could not find my flat after wait half hour went toilet 25 time with Axnity so have some behalf of me phone check PIP but FTU which mean fail turn up I so angery with PIp I decided give notice to my flat and moving out I want go back Disability Benefits just had enough I can how peoples are kill them self over PIP 
    V.shaw
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    It is understandable to think that we don't deserve the awards we are given, especially when our condition doesn't affect us all the time. When you read the forums or listen to the news about people being turned down for awards that they so obviously deserve we can feel guilty. Remember it is not your fault ! Even if you wanted to you couldn't give your award to them. If you give up your award, not only won't it help anyone else, it could actually be detrimental. The HCP who made the assessment could be subjected to scrutiny, just for doing their job properly.
    It is, of course, for each of us to come to terms with ourselves, how we cope with the situation we find ourself in. For many people on PIP, finding a purpose is important. Some people are able to return to work or find new work with the help of PIP.. Others take up new hobbies or develop new interests.
    The importance is that PIP is  only awarded to deserving people, with genuine  needs who meet the criteria. There are exceptions of course but no lying, cheating lazy, goodfornothing waster would give a second thought to returning their money. So trust that the system got it right for you, if your condition improves, then is the time to have a reassessment and let the system work as it should.

    Be all you can be, make  every day count. Namaste
  • BenefitsTrainingCoBenefitsTrainingCo Member Posts: 2,692 Pioneering
    Hi atypical - as everyone on here has said, PIP is paid to people who meet the criteria and have been through a long and depressing claiming process to establish that they satisfy the rules. The intention of PIP is to assist you with the extra expenses of being 'disabled'. and to enable you to lead a fuller and more participatory life, for example, by being able to get a taxi if you need one.It is not intended to be a label, or a liability, it's just a financial means of being able to do things that you want or need to do. Don't overthink it, as Matilda says! If you are having a good day, and can perhaps walk further or feel less pain than the PIP descriptors 'permit', then don't worry about it. PIP is intended to reflect how things are for you most of the time, not all the time, and people with fluctuating conditions are accommodated within the PIP rules. So - don't worry, be glad you have it, and as CockneyRebel says 'let the system work as it should', which it clearly is doing in your case! 
    All the best,

    Jayne
    The Benefits Training Co:
    Paul Bradley
    Michael Chambers
    Will Hadwen
    Sarah Hayle
    Maria Solomon
    David Stickland
  • atypicalatypical Member Posts: 5 Listener
    Ok thanks 

    @CockneyRebel @Matilda @wildlife

    so just because I have PiP does not mean my condition has vanished but Pip has removed some of the barriers and impact of my condition and that's why I have been successful.

    if I give it up all those barriers and impacts would come back.

    is that PIP's purpose to help remove or reduce those barriers caused by disability/condition?

    Thanks
    Pam
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    The purpose of PIP is to help remove barriers caused by financial cost. Obviously, your difficulties still remain, PIP is paid to help with the additional costs of living  with your condition. For some people that could be the cost of taxis or the cost of adaptations to your home. It maybe that you need a special diet. PIP awards are given so that  you can live the best life you can without cost being a barrier. At least that is the theory.
    Try not to over think it, you got an award because the HCP and the DM deemed that you met the criteria for one. It does not mean that you have to think of yourself as disabled, it does not mean that you can't do the things that you feel able to do. It does mean that you should live the best life you can

    CR
    Be all you can be, make  every day count. Namaste
  • DasiydoDasiydo Member Posts: 94 Courageous
    I feel can't cope with another let down by PIP just can't face at movement 
    V.shaw
  • wildlifewildlife Member Posts: 1,314 Pioneering
    @ Dasiydo  If you start your own discussion (click on new discussion) you can tell us all about where you are at in trying to get PIP and someone will help you. I am a very strong person normally but going through the PIP process has made me ill so you're not alone..X
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    Although my appeal succeeded, still three months after my PIP nightmare ended I am stressed.  For example, when I came back from the Tribunal I put my bundle of papers in a heap - and even the thought of touching them again  causes my stress levels to rise
  • wildlifewildlife Member Posts: 1,314 Pioneering
    @Matilda Good job you didn't do a Subject Access request you'd have a much bigger pile. I am suffering too and still not finished. Will try and have a break once I've supplied all the necessary info. to ICE and ICO. Not really sure what ICE (Independent Claims Examiner) want to be able to investigate my ATOS complaint. Will ring them on Monday.. 
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    @wildlife

    I couldn't have coped with any more red tape - I'd have been a nervous wreck.

    Hop it doesn't take too much longer for you to get a resolution.


  • wildlifewildlife Member Posts: 1,314 Pioneering
     @Matilda I am a nervous wreck but I've come a long way and aim to find out if we are/aren't protected by law. ATOS took 5 months to reply to my complaint and the timescale with ICE is even worse as they're still on complaints from June 2016. So there needs to be something else in place to protect all these people who are victims of abuse, sounds harsh but that's what it is. OK kindness and empathy may not be appropriate in a business setting but honesty in recording the correct facts is a must. Anything less than that is unacceptable. 
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    @wildlife

    Yes, Atos assessors are corrupt and blasé with it.  I've said before that my assessor wrote that she watched me take my bag off over my head, put it down on the floor and then pick it up again when I was about to leave.  I never removed my bag from my body once, not even during the exercises!

    I hadn't the strength to complain on top of all the other hassle. But I admire you and all the others who do complain.

    An MPs' enquiry into Atos complaints was abandoned because of the general election and there appears to be no sign of a new one.
  • wildlifewildlife Member Posts: 1,314 Pioneering
    @Matilda ATOS sent me 6 X A4 sheets of how the report was in line with DWP guidelines. Their favourite cop out which I've had twice from different sources at ATOS is: It is very difficult to reconcile what was said or not said at the assessment we basically have two different versions of events. Translated that means they believe the assessor is telling the correct version and I'm lying. I'm hoping ICE will see that I wasn't likely to have removed the plastic label from a water bottle held between my knees. Let's hope so anyway..
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    @wildlife

    I suspect that Atos have little credibility with Tribunals which in part is why so many appeals succeed. 
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    Atos/Capita being employed by the DWP obviously carry the most weight with them. When you have to go to tribunal; there is no such Bias, all evidence carries the same starting weight. Then the panel will decide between an HCP version and your version backed up with credible professional evidence. This is why tribunals find in favour for the majority of the time
    Be all you can be, make  every day count. Namaste
  • NystagmiteNystagmite Member Posts: 609 Pioneering
    wildlife said:
    @Matilda ATOS sent me 6 X A4 sheets of how the report was in line with DWP guidelines. Their favourite cop out which I've had twice from different sources at ATOS is: It is very difficult to reconcile what was said or not said at the assessment we basically have two different versions of events. Translated that means they believe the assessor is telling the correct version and I'm lying. I'm hoping ICE will see that I wasn't likely to have removed the plastic label from a water bottle held between my knees. Let's hope so anyway..
    That's what ATOS said to me. Most odd how my GP, both parents (neither of whom were present at my assessment) and my friend (who was present; but has never discussed my medical problems with parents) all agree that I have issues with things. ATOS will tell you different. ATOS have met me once, friend spends time with me at least once a month and has known me for almost 5 years.

    I will never understand how a decision on one's disability can be made in one hour. It's not as if we're asked to carry out tasks. Maybe if they did ask us to do things, they'd realise how much some of us struggle...
  • wildlifewildlife Member Posts: 1,314 Pioneering
    @Nystagmite You're right it can't be assessed in an hour. I was trying to chop parsley this morning when a pain shot through my left arm. I've been in 5 road accidents, 2 with severe whiplash and 1 when the car rolled over and the roof caved in hitting me on the head. I had it a car first and shaken about like a rag doll. Now I constantly drop things, knock pans, spill hot liquid, burn things, cannot bend down to the oven nor have the strength to slice a carrot, but according to ATOS I am able to prepare food with just an aid. What aid? I have a perching stool that's all. They accept I have weakness in both legs and peripheral neuropathy. Had 4 falls last year, yet because I take pain killers, the results of my MSE were normal for upper body strength (all lies) which were the only reasons she could dream up why I can step over the side of the bath and stand to shower. My assessor wrote in functional history that "she feels she needs to hold on to a rail with both hands". She wrote "she feels" lots of times which makes the DM think it's all in my mind. "When sitting she feels she has more pain in her Feet" That's a good one. It leaves me speechless that a so called Paramedic can write such rubbish (yet to be investigated whether she was qualified). It would be a matter of life or death if attending an emergency. Thank-you for listening, I wasn't sure what to give ICE by way of more evidence of malpractice, I now have a few ideas.      
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    I've been to a Tribunal and won so know what they do.  I still think part of the reason so many succeed is because Atos have little credibility.
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    @wildlife

    Paramedics are advanced first aiders; certainly not qualified to assess people with complex disabilities.
  • NystagmiteNystagmite Member Posts: 609 Pioneering
    wildlife said:
    @Nystagmite You're right it can't be assessed in an hour. I was trying to chop parsley this morning when a pain shot through my left arm. I've been in 5 road accidents, 2 with severe whiplash and 1 when the car rolled over and the roof caved in hitting me on the head. I had it a car first and shaken about like a rag doll. Now I constantly drop things, knock pans, spill hot liquid, burn things, cannot bend down to the oven nor have the strength to slice a carrot, but according to ATOS I am able to prepare food with just an aid. What aid? I have a perching stool that's all. They accept I have weakness in both legs and peripheral neuropathy. Had 4 falls last year, yet because I take pain killers, the results of my MSE were normal for upper body strength (all lies) which were the only reasons she could dream up why I can step over the side of the bath and stand to shower. My assessor wrote in functional history that "she feels she needs to hold on to a rail with both hands". She wrote "she feels" lots of times which makes the DM think it's all in my mind. "When sitting she feels she has more pain in her Feet" That's a good one. It leaves me speechless that a so called Paramedic can write such rubbish (yet to be investigated whether she was qualified). It would be a matter of life or death if attending an emergency. Thank-you for listening, I wasn't sure what to give ICE by way of more evidence of malpractice, I now have a few ideas.      
    They said aids would work with me. But what aids tell you how to cook food and when your food is actually cooked, I really don't know. I was never actually asked what difficulties I have cooking - it was stated on the form I have difficulties due to poor vision; but was only asked what I lived on. My mum wrote something for my MR about my difficulties with cooking too, which was ignored. I can't even make a cup of tea unaided; so goodness knows how anyone thinks I can cook a meal.

    Most odd how I got DLA because I can't cook a meal without needing help from another person. I've not suddenly got better.
  • DasiydoDasiydo Member Posts: 94 Courageous
    I feel low today third time luck With PIP but do know change rule with panic attacks at be 0 point but tonight be out
    V.shaw
  • rosscolfcrosscolfc Member Posts: 29 Courageous
    Know exactly what your feeling. I'd say I have 2 good days in a week. 
    If I plan my days well. 
    But a trip to the shopping centre or national trust with the family will lead to the next 24/48hrs written off with my usual symptoms of pain, muscle spasms and stiffness where just walking to the loo is effort. 

    But out when I'm having a good day. Or if I'm really lucky 2 or 3 good days on the bounce I feel mentally drained. It's a weird emotion I think mainly because I miss employment. And I think wow why can't every day be like this, I'll get back into work. Then a day later I'm flat on my back in agony thinking whose going to employ me, in One day off for 2/3! 

    All i I can say is stay strong and remember. You didn't chose to be disabled. Your not a fraudster. It's been diagnosed by doctors who know a dam sight more than some government QUANGO!
  • BenefitsTrainingCoBenefitsTrainingCo Member Posts: 2,692 Pioneering
    Dasiydo - as requested above, you could start your own thread on this. I'm wondering if you are talking about the changed rules about planning & following journeys. These mean that there are some points which can't be scored on the basis of panic attacks, but if you can't take any journey at all because of panic attacks, you can still score points. If your condition changes from day to day, then you could still get points as long as you were unable to go out more than 50% of the time.
    You can also still score points (but not very many) if you need prompting to take a journey, in order to avoid your panic attacks.

    Hope that helps. 

    atypical, it's awful how the government's policies and the terrible quality of the assessments and administration has led to people who get through the process having doubts like yours. As everyone has said, PIP is paid for the extra costs of disability. You're entitled to it and you had a decent assessor. It does happen - and that is how it should happen. You got what was rightfully yours. It's still not very much when you think about how the world is set up.

    Will
    The Benefits Training Co:
    Paul Bradley
    Michael Chambers
    Will Hadwen
    Sarah Hayle
    Maria Solomon
    David Stickland
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