Battle Commenced

30 Aug

After taking an afternoon to read the instructional notes and the forty paged PIP2 form, I ruminated, cogitated, considered, made notes, and sat at my desk last Saturday morning and began the dreaded task.

Okay so the first couple of pages were not so daunting, listing the names, address and last appointment dates of medical professionals I have contact with. They only have boxes for three, I have six, hmm, how to prioritise, those I see the most (Physio, Occ Health) or the more important sounding (Consultant, GP) and make a note to add the others in the ‘additional information’ section.

Now to the gritty part, how my disability affects what I do in general areas of life, how it’s gotten around, what aids are used, what extra is needed. The tick boxes are ticked, then the explanation paragraph, how to be concise and exact to cover all scenarios within the half dozen lines in the box provided. Completing these things can be mentally demoralising because you have to admit, in writing, all the things I cannot achieve and the impact it has every moment of everyday, the exact opposite I am trying to think about every moment of everyday. Also I am so used to doing things the way I do, it is easy to forget it is not the general natural way that ‘ables’ do it, my usual is so normal I don’t think of it as different or awkward, but it needs adding to the form. Always keeping in mind the reader knows less than nothing.

I scribble draft one in pencil on my note pad, edit it, and check the wording for its accuracy and spelling before committing it to the form in ink. As my fingers, wrists and arms are affected by my FSHD I struggle holding the pen/pencil and writing clean and clearly for any length of time can cause strain and cramp, so after three questions that’s enough. Time to put it away and come back to it another day. I returned to it Sunday morning, reread what I had written, add something I had forgotten and start again with the next question, and again on Tuesday, making other notes of what to add in the ‘additional information’ page.

So far I have a detailed letter of support from the Muscular Dystrophy Regional Care Advisor and a lengthy report from the Occupational Therapist, I am waiting to receive a second lengthy report with risk assessment from my Social Worker.

Across the weekend I will finish the form, a friend (former work colleague) is visiting Saturday and she’ll read it through to see if it makes sense. Then Sunday I’ll scan the pages into my computer and copy the reports I have, printing my details on the back of every page incase they get separated in the office. While my BFF is here we will wander to the post office and despite it being a free post return, get a certificate of postage, pay extra for it to be tracked and signed for. I’m wondering what it costs to hire a guy with a briefcase chained to his waist because I am not going to be happy if it goes missing before being properly processed.

The saga continues…..


Posted by on August 30, 2019 in Projects


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9 responses to “Battle Commenced

  1. menhir1

    August 31, 2019 at 11:59 am

    Some years ago, I ended up stating on repeat forms and repeart questions that every time I was asked to complete my details, it was opening up wounds and distress, the very things I was trying to deal with. The reasons, causation etc was already on their records and none of that had changed. What I was attempting to change was the way I could deal with all of it.

    It is a very intrusive mechnistic process completing the books of forms at the intervals that are deemed by the offices of Government machinery to be appropriate. I do understand the need for updating and checking, however, the methods used are very blunt instruments. One size does definitely not fit all. Anything more tailored has become suspect because of the inexpertise of the gatekeeping staff and the apparent lack of interest by some-not all- the professionals. Also, tailoring doesn’t fit the need for profit-making by the third party agencies given the quango contract.

    I am pleased to hear you have special friends around to give you some physical support with the task in hand. I also think that there are some cases, probably like yours, that will pass through the basic process you have begun. You have admirable innate courage Ma Brave!


    Liked by 2 people

    • AnneMarie

      August 31, 2019 at 12:07 pm

      I fully agree that the DLA system needs reviewing, it has been forgotten, tinkered etc by the civil service and claimants across the decades, but a contract such as this should be non-profit and all parties grossly underestimated the task.


  2. deacongill

    August 31, 2019 at 4:07 pm

    I’m very struck by the way that this form exacerbates mental and emotional distress under the guise of assessing you. You’re probably only giving them info they already have which just needs some updating. So glad you have supportive friends around. You are indeed a courageous woman. Not that that helps, at a time like this!

    Liked by 1 person

    • AnneMarie

      August 31, 2019 at 4:10 pm

      I am constantly concerned for the thousands of others who are uninformed of the process and don’t reach out for help with what is such an important firm for much needed funds and what is classed a ‘gateway benefit’ (the fact you receive it benchmarks your eligibility to other assistance). I can fully understand how some have suffered, how it’s brought in mental breakdown, anxiety attacks and driven some to attempt/commit suicide.


      • Renee Schonefeld

        August 31, 2019 at 8:20 pm

        I am like you do things “differently ” and yep get told that isn’t the right way. I say but it’s my way and I can’t do it your way. I’ve been doing it 53 years my way. I hate filling out that paperwork. I get asked stupid stuff like do I own a cow.

        Liked by 1 person

      • AnneMarie

        August 31, 2019 at 9:58 pm

        Tedious isn’t it 😘


      • deacongill

        September 4, 2019 at 7:11 pm

        This is just awful. Talk about a hostile environment.

        Liked by 1 person

  3. snowbird

    September 3, 2019 at 10:47 pm

    Jeez! Utterly exhausting what you have to go through! I always completed my MIL’s and answered all questions re the worst day scenario…never the good day one. It’s utterly horrific, why doesn’t the GP account alone sort everything? When my sister was dying of cancer she had a nightmare trying to get benefits! It all makes me utterly furious!!! Good luck gal….xxx

    Liked by 1 person

    • AnneMarie

      September 4, 2019 at 10:41 am

      I rarely see my GP, if I did he’d probably mix me up with someone else or one of the coroners reports all over his desk 🙄



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