Advice for PIP appeal and MR letter ignored (ASD, BPD, ADHD & Physical deformity)

TiffanyAnne
TiffanyAnne Online Community Member Posts: 4 Listener
in PIP, DLA, ADP and AA
So I'm just looking for a bit of advice really, I've read a lot of these forums in the last six months but thought maybe explaining my situation could find me some more solid advice.

I applied for PIP regarding the above conditions, I am diagnosed with Borderline Personality Disorder and a rare deformity called Madelungs Deformity where my lower arm bones didn't form correctly and I have pain in my wrists often. At the beginning of my claim I had a pending ADHD diagnoses (over a year waiting still...) and just after recieving my first decline with 0 points I had a letter which confirms they are now looking at the possibility of ASD as well. This was included in my mandatory reconsideration which again was 0 points. 

I thought perhaps in the first claim as I didn't know the point system that was my downfall so for my MR I ended up writing an 8000 word letter to cover EVERYTHING.

I made sure to spell it out so simply with everything "I can not cook without an aid, my wrist support, due to overhwhelming pain." etc. Why I cannot do it, what help I need, what happens without help.. Still 0 points on everything and I'm so confused as to why? 

In terms of evidence, it was overwhelming. I had hospital notes from my overdose years ago, multiple assessments which show I've struggled with what I've reported for over ten years, my work confirming the adjustments they made, my mum confirming she has to drive me due to anxiety, confirming she literally works with my due to my anxiety and depressive moods. A letter from my counsellor, letter confirming extra time at university for exams due to my struggles with concentration, letter with advice from pysiotherapist and even an occupational therapist confirming I cannot do certain tasks at work such as preparing food due to my wrists. 

It was noted a lot by my "assessor" that because I work a 0 hour contract and take up some hours at work that proves I have motivation which completely cancels out any sections claimed under mental health. I have to work a 0 hour contract as I cannot work a contract due to my mood swings and anxiety. If I work too often it will lead to me self harming and feeling suicidal etc because of the stress. It's dramatic I know but it's just how the BPD affects me, very intense reactions :( 

She also noted how I don't take medication. I use to have anti-depressants which I felt made me worse so I came off them for a while. I considered going back on them however in the last two years pursuing the ADHD route I considered if a lot of my problems came from that rather than BPD which could be misdiagnosed so I choose to stay off pills until it's confirmed. In terms of painkillers my brother is an addict to prescription drugs so I will do everything I can (use wrist supports, psysiotherapy, heat/cold treatment and over the counter medication) to manage my wrist pain. I do not like medication. I explained all of this on the MR letter.

I could go on forever about the things in her assessment but I'm sure you guys know the way it works now. But one big thing that got me was looking through a guide on information the assessor should get it states they need to take into consideration readjustments at work etc. I asked her if I should take about my struggles at work and what they put in place and she told me "no, it's based on the next sections not how you do at work." I included the adjustments in my MR after knowing this but it doesn't help her report just stating a bunch of stuff that isn't true. 

My biggest struggle now is deciding what to do and if I have a chance. Hopefully the appeal process would take so long that the ADHD or ASD is confirmed and that could sway it. In my MR letter I asked to be called by the decision maker mainly so I could explain the medication, the updates in the ASD/ADHD and so fourth. They did not call me. I'm worried that they simply did not read my whole letter. They didn't add ASD. Didn't read all the extra evidence I provided. 

Should I call them first and challenge this? Ask why I wasn't called? Kinda passive aggressively ask if they recieved everything as it wasn't addressed? 

Or should I just go straight to the appeal? Do I need to start everything again from the start? Attach all the evidence again? How much do I write?

I'm so scared if I write too much it won't be read, same as my MR.. I just wondered if anyone had been through a similar situation and where I should go from here. 

Thank you in advance if anyone responds, it means a lot. 

Comments

  • poppy123456
    poppy123456 Online Community Member Posts: 64,463 Championing
    They don't always ring before making the MR decision. Only 27% of MR decision change so the chances of the decision changing at this stage was always going to be very slim. You've done the MR stage, now it's time to move onto the Trfibunal.
    PIP isn't about a diagnosis, so that it's needed at all. I will say though that less is very often more when it comes to evidence. A letter that's 8,000 words is quite excessive and in my opinion, far too much.
    For the real world examples all you need is at least 2 examples per descriptor that applies, you should aim for at least half an A4 side of paper per descriptor. This would be much less than 8,000 words.
    They do not need to know your life story. You should move on from the decision letter reasons for refusal and the assessment report lies/contradictions because a lot of it is general copy and paste.
    Once you've requested the Tribunal you can get some expert advice from an agency near you.

  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    edited November 2022
    Hello @TiffanyAnne

    Welcome to the community! :)

    Thank you, for being so brave in sharing your story with us <3 I'm so sorry you've been through such a stressful time. I wanted to comment to say we'll be emailing you from our community email later today, we would like to support you in any way we can.

    With your PIP review / appeal, Turn2US have some brilliant advice on how to request and the process of Tribunal.
  • TiffanyAnne
    TiffanyAnne Online Community Member Posts: 4 Listener
    poppy123456 said:
    They don't always ring before making the MR decision. Only 27% of MR decision change so the chances of the decision changing at this stage was always going to be very slim. You've done the MR stage, now it's time to move onto the Trfibunal.
    PIP isn't about a diagnosis, so that it's needed at all. I will say though that less is very often more when it comes to evidence. A letter that's 8,000 words is quite excessive and in my opinion, far too much.
    For the real world examples all you need is at least 2 examples per descriptor that applies, you should aim for at least half an A4 side of paper per descriptor. This would be much less than 8,000 words.
    They do not need to know your life story. You should move on from the decision letter reasons for refusal and the assessment report lies/contradictions because a lot of it is general copy and paste.
    Once you've requested the Tribunal you can get some expert advice from an agency near you.

    Yeah I didn't think it was about diagnosis but my assessor noted I wasn't diagnosed yet so wasn't sure if it might change how it's viewed (even though it shouldn't).

    So what kind of evidence would I need to include going forward and which to leave out? 

    Looking at the tribunal thing to fill out it gives me three sections "what you disagree with" "why" and "other reasons for appealing." So would I keep adding the what you disagree with sections and cover the different areas again except a bit more concise? 

    Then in terms of other reasons they say to note things that you felt weren't considered so would this maybe be when I mention work adjustments that weren't considered and the reasoning I'm not on medication?
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,922 Championing
    I can hear how this would make you question things @TiffanyAnne. I think you have done a really great job at reaching out to us. 

    From my understanding, the kind of evidence that you would need to include is anything that demonstrates the impact on you.

    I am hoping other people might be able to provide you with more concrete examples though based on their own experiences and respond to your other questions.

    I mainly wanted to respond to you to let you know I have seen your response, I hear you and I am wishing you the best of luck with this.

    Please don't hesitate to let us know if there's anything else we can do to support you. We are all here for you and listening to you.

    You don't have to face this, or anything else, alone if you don't want to. Take care for now and we will look forward to, hopefully, hearing from you again soon  :)

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