PIP, DLA and AA
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PIP change over terrifies me

TopkittenTopkitten Member Posts: 1,263 Pioneering
I haven't been around for some time and, even though I said I wouldn't be back, need to find out information. I should have guessed that when I finally DID get the changeover letter it would come at a bad time and it has.

Going back some years now I had great difficulties getting awarded DLA, not because I didn't deserve it but because I have unique issues that no one else understands and because I don't go about things the right way often. It took 4 years, 3 applications, 3 appeals and 1 second appeal to get treated fairly and I cannot go through all that again just because some Governmental idiot has decided to mess up the system. Especially as I now understand that I will lose my benefit if I get a bad first decision and the appeal process is most likely still so messed up.

I tried to get DLA firstly on my own and then with the help of CAB for the appeal, it failed. My second attempt was assisted by MIND and again CAB helped with the appeal, still no luck. The final attempt was using someone from DWP for the initial form filling and then CAB helped with the appeal and the second appeal after the first appeal's poor decision was thrown out by a clerk, didn't even go to the higher tribunal. However, the appeal board was the same 3 people for every appeal and the judge is well-known for her stance that disability only begins when breathing ceases. I know that sounds daft but it was how the lady from the CAB described her.

Now I have to go through the change over and I am in a different area for CAB and this group will only see people in their office and that is something I cannot do. I have today requested to apply for PIP but must wait until Saturday before I can even do the initial assessment. Even though I am now considerably worse than when I applied for DLA I very much doubt anyone in the PIP process will understand as my condition has no name, no treatment options and literally does not exist. I seem to be the first person to ever suffer it.

Without meaning to give offense here I shall explain a little but I do wonder about some people saying they cannot walk when they a) suffer much less pain than I do whilst I refuse to stop walking, b) use far less pain medication than I need to take in order to do so and c) do not try to keep going rather than obeying a doctor who says "You should stop walking". The bones in my spine are fine but I have 7 or 8 discs collapsing in the lower spine and 1 rupture in the cervical spine. The pain never stops even if I do nothing but does give me pain levels comparable to 8 or 9 slipped discs constantly. I also get sciatica in both legs constantly and yet I still walk. I am on the highest pain killer given to people which I use in patch form and am always under medicated due to GP's reluctance to increase pain killers once I reached potentially deadly levels of that pain killer. Hence I suffer much more than anyone in the health service says I should. Because neural pain isn't constant I will always be able to walk a few steps no matter how bad I get, enough to handle transfers such as bed to wheelchair etc. It also means that the worst of the suffering is delayed so I have to judge when to stop rather than waiting until it hurts. After all, it always hurts anyway. However, this means that I am always valued at lower levels when both pain control and assessment decisions are made. It is very frustrating.

I use 2 sticks to get about the house and sometimes one and risk falling when I carry anything. I have 2 wheelchairs, an electric scooter and a motobility vehicle with a hoist fitted to get the scooter in and out but, because I can drive, people don't understand what I put up with to keep it. If I didn't have it I could not leave my home. Because there is no treatment and no surgical options and because I have suffered for over 12 years I am under no specialists most of the time. The hospital Pain Clinic have finished anything they can do for me and now refuse referrals and the Community Pain Clinic discharged me last year as they neither understood my problems nor wanted to even try to treat me. Orthopaedics discharged me at Xmas rather than admit the mistake of putting me down for the wrong surgery for the one disc that is operable which left me worse off than ever. Add to this I have been blacklisted for care in the home again to cover up mistakes this time made by a Social Worker. Only this week I had to complain to NHS England to get a home visit by a GP as they were refusing to see me despite the fact that it was their fault for not keeping medication in line with suffering and meaning that for 3 weeks I have been unable to go out. If the health services cannot get it right what chance do I have for the PIP system to get things right?

Anyway, I have rattled on too much as I tend to do when things are going wrong again.

I have done an online assessment and should get high rate mobility on the PIP scale and should get whatever the equivalent is for DLA care but I have little or no supporting documentation and no GP I trust to give a reasonable explanation plus I have been told all I can get is a letter from the surgery and would have to pay for it. My mental health is in a bad way and I have been classed as suicidal for 5 years, fighting the urge to give in every day. I have been threatened with being sectioned and yet I am not under Mental Health. The list goes on and on. How do I prove to the idiots in the PIP assessment system that I am ill?

TK
"I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.

Replies

  • bevt2017bevt2017 Member Posts: 353 Pioneering
    Hi @Topkitten

    I remember you, welcome back.

    I'm so sorry they are putting you through all that ordeal again.
    I know all to well how upsetting assessments can be.

    My only advice would be for you to contact your MP? 
     Bev x
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    Ty for the reply @bevt2017.

    I have tried once before complaining to my MP regarding the Care issue. Despite my clearly stating I could not go to see him the reply I received said I should go to see him. When I repeated my inability to do so he simply referred the complaint to Social Care's internal complaints procedure who whitewashed the whole incident.

    I complained because I was not allowed to have support to leave the house despite being assessed as needing it. It meant I went 3 months unregistered with a GP. Because the Social Worker finally made to telephone calls to a surgery and finally allowed me the care the complaints decision was that she did a good hob by making 2 calls she shouldn't have to help me. The 3 month wait for help and medication was brushed under the carpet.

    I have no confidence in my MP at all.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • bevt2017bevt2017 Member Posts: 353 Pioneering
    Hi @Topkitten

    That's disgusting!
    Your MP should be helping you, not fobbing you off.

    Your right you shouldn't have to do that.

    I had a meeting on monday with two men from the job centre at the deaf society. They were temporary employed by the job centre, to find out how DWP and ESA can change there treatment of disabled people.
    I have never had a problem with ESA but i have had a nightmere with DWP.
    It looks like they have finally released the system doesn't
    Work. 

    Bev x
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    @bevt2017 , to be fair DWP used to be quite good with DLA but with the introduction of PIP and UC it has made things much more complicated especially considering the problems with the latter 2. Appropriate training is now very difficult and things are having to change on the fly and, with all the budget cuts and changes in benefits, having everyone up to date has become an impossible task.

    Like you my ESA was fine and most of my problems with DLA occurred when PIP was first introduced and the government was bearing down on them to cut benefits generally. However, it would have been sorted out much sooner if there hadn't been such a stupid judge involved in my case repeatedly.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • bevt2017bevt2017 Member Posts: 353 Pioneering
    Hi @Topkitten

    I've only dealt with P.I.P being new to disability.

    I normally don't comment on DWP discutions ect. but when I saw your name I remembered what you did for me.
    I've only recently been awarded enhanced for both, but it has been a nightmere.
    I know in a few years I will have to do it all again, and the thought makes me feel sick.

    Sorry i couldn't be more helpful.
    I wish you the best of luck, and hope all goes well for you.
    Bev x
  • YadnadYadnad Posts: 2,856 Member
    I know in a few years I will have to do it all again, and the thought makes me feel sick.
    Oh yes I know that feeling well!
    Since 2015 I have had 3 assessments/re-assessments for PIP. Each one for 3 years but reviewed every 2 years.

    After the third time I have given up completely as not being able to face this constant review every 24 months. At 70 I would have expected the DWP to use some sense.
    In a way I feel relief in knowing that I will never have to go through another face to face assessment, MR & Tribunal never mind having to fill out those forms and wonder where I can get some updated evidence from.
  • WaylayWaylay Member Posts: 949 Pioneering
    @Topkitten, I mean this to be helpful - I hope you take it that way. 

    You said: Without meaning to give offense here I shall explain a little but I do wonder about some people saying they cannot walk when they a) suffer much less pain than I do whilst I refuse to stop walking, b) use far less pain medication than I need to take in order to do so and c) do not try to keep going rather than obeying a doctor who says "You should stop walking". 

    There's no way to compare pain between people, because all pain is subjective. I'm sure many of us have wished that we could plug something into our brains that would let others feel what we deal with! Unfortunately such a thing doesn't exist. Pain doesn't come from the damaged tissues in your body - your unconscious brain (not your mind!) creates it as a response to signals from those tissues in order to get you to do whatever is needed to survive / reduce injury (usually, fight, run, rest, or see a doctor).

    This is why a guy with a nail through his shoe can come into A&E in absolute agony, even though it turns out that the nail has gone between his toes. His brain reacted to a warning signal from a toe that the nail rubbed along. It saw a nail protruding from his shoe, went, "OMG DISASTER" and caused him to feel agony. It's also why someone who thought they got scratched by a twig can feel almost nothing, even though they'd actually been bitten by an enormously venemous snake (an extremely painful experience which is often fatal - he survived after days in a coma). Pain is an experience that often has very little to do with the amount of actual damage. Other issues, such as central sensitization, can also weigh in here.

    Similarly, the way people respond to medications is pretty variable too. Many redheads/gingers react very differently to drugs, including caffeine, than most people. Others don't react at all to opiates. My partner gets absolutely no effect from codeine or morphine.

    So comparing these things between people isn't offensive - it's impossible. However, saying things like you wrote above to other patients often does cause offense, because you're basically saying that everyone else suffers less than you, but they don't work/try as hard as you. Saying this to other patients is unlikely to result in much support or help. 

    Saying it to the non-disabled, doctors, assessors, etc. is likely to get you labelled as "overdramatic", "attention-seeking", or "over-catastrophizing". I'm not saying that you ARE any of those things, just that they're labels which often get pinned to people who speak this way. Saying that you're in severe pain may not get you any better treatment from professionals at this point, but you never know. Maybe?
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger

    You said: Without meaning to give offense here I shall explain a little but I do wonder about some people saying they cannot walk when they a) suffer much less pain than I do whilst I refuse to stop walking, b) use far less pain medication than I need to take in order to do so and c) do not try to keep going rather than obeying a doctor who says "You should stop walking". 


    I have no idea how on earth you can say this! You just can't compare yourself to anyone, especially when you have no idea what other people go through. I'm sorry you're dealing with so much right now but please stop comparing yourself to others by saying things like this. I wish you good luck with your PIP claim and hope you won't have to fight it this time.

    Relevant evidence will need to be sent with your form because they very rarely contact anyone for evidence. The onus is on you to make sure it's sent.
    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.
  • bevt2017bevt2017 Member Posts: 353 Pioneering
    Hi @Yadnad

    I'm so sorry that DWP have put you through so much, that you have decided not to deal with them anymore. 
    I can totally understand were your coming from. But for me I just can't afford not to.
     
    Some disabled people I know are to frightened to tell DWP of change in cirumstance, because they know they will have to go through the process all over again.

    This is why I will still keep fighting and not give in.

    When my MP had a meeting with the Secretary of state for P.I.P. There response was that claimants were not sending in enough information "I totally disagree".

    My MP has also got meetings with the IAS and CHDA to discuss How the process and how it effects some claiments.

    I wish you all the very best
    Take care
    Bev x
  • [Deleted User][Deleted User] Posts: 142 Listener
    The one thing I take comfort from is that so many of us are in very similar situations, and we’re all terrified of this change over so you’re not alone. Everyone is dealing with a variety of debilitating illnesses and feeling like we have to prove them again and again after being given ‘indefinite’ claims thinking we’d never be subjected to form filling, medials, appeals and tribunals again. 
    Mice been one of the very lucky ones and had DLA since I was a child, only had to appeal once when I was 18 and that was my own fault as I didn’t fill out the form with as much information as I should have. And 23 it was given to me indefinitely (never had a medical for DLA) and esa was very straight forward too, put into the support group without a f2f, now I’m changing from DLA to PIP I am also worried as my DLA is my only source of income along with my ESA, I’m dreading having to go for an assessment as I have major anxiety issues along with numerous physical issues, I can’t compare my pain levels to anyone else, as that just isn’t fair. Even though I am in daily constant pain as was told by my spinal surgeon another condition I have will make the pain I experience a lot worse than most other people, so don’t compare yourself to other people. Just remember that unlike DLA, PIP is more tailored for how this conditions effect you and not just the diagnosis! 
    And also take comfort from what the person on the PIP phone number told me when I rang to start my claim ‘don’t listen to all the horror stories you hear on the media’ some of us will have good experiences and some of us bad and unfair. It’s just the way it appears to be. 
    I wish you the best of luck and remember - this forum is full of wonderful people who will share their stories and support you as much as they can, even if it’s only lending a friendly ear whilst you vent! Xx 
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