I feel cheeky/like a foney — Scope | Disability forum
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I feel cheeky/like a foney

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smileysun
smileysun Community member Posts: 21 Courageous
Hello everyone, I'm feeling a little bit cheeky and like a phoney to be honest, since receiving my pip decision via letter. I spoke with a lady over the phone about my struggles in day-to-day life, they included issues in motivation, concentration, initiating tasks, communicating, sensory issues, everything. I received a letter back saying I have been awarded 0 points in any category even though I provided reasonable examples with information backing up any points I made. 

I do want to fight for this, but the issue is is that I struggle to put my thoughts into words ( I think I have undiagnosed dyslexia ) along with aADHDand autism. 

Due to these struggles, I'm struggling to know how to fight back, where to start etc it's all very overwhelming and then Im fearful that Ill respond and they'll get back to me saying that im claiming something I'm not entitled too nor do I need, even though I know that I do need this payment more than anything. 

I work 4 days a week 5 hour days, and this is all I can manage without burning out or being overwhelmed, I explained to the pip assessor that in work I can handle interactions where it is a script, but if it goes off the script I get anxiety and I struggle with those conversations/interactions, I also struggle with interpersonal relationships especially when it is one on one conversation, as this is where my mind goes blank and I struggle with knowing what to say, this results in me getting home and crying as a result of this building up all day.

They state that because I am working, I am coping and managing well and I don't require the payment, despite explaining to them that I need to take multiple medications and I often forget ( due to my ADHD) I also explained that my boyfriend helps with budgeting and paying bills because I struggle to do this and I also explained to the assessor that I can't rreceivespecific therapy because the NHS will not provide that, they say id have to go private ( which is one of the biggest reasons why I really need this payment ) to help me understand myself better through therapies I don't have access too, another thing which was stated on my letter is that I don't take medication for ' autism ' there is no such thing!!! I take sertraline and I explained that I had to reduce my dose from 100mg to 50 because it didn't help manage my anxiety and that I am awaiting adhd medication, but my titration has been stalled due to it not being available ( I would argue to say that even though it's ludicrous to suggest that there is a ' magic ' pill for autism, that me taking sertraline and also awaiting adhd medication would suggest I need medications to ' manage ' my conditions.

I need prompting to prepare food, which leads to me not eating and drinking because I hyperfocus on other things, resulting in me not managing my nutritional needs correctly and I also forget to take my medication.

There are times where I have started preparing food and I have left the oven switched on due to a lack of concentration and also being distracted due to my adhd.

I cannot leave my house without headphones due to sensory issues and If things do not go according to plan, it can result in a breakdown in communication and I would struggle to ask for help, etc ( bus drivers and strangers in the street ) this would result in me having a meltdown crying and not knowing where to turn. I get lost all of the time if I am taking an unfamiliar bus route/bus as my sense of direction has always been poor and this is something I have faced my entire life, but according to the pip decision this is something I manage well. 

It also suggested that I can understand signs/instructions, even though at work they have to explain things to me in very literal terms in order for me to understand what is required of me, this is something which also affects my communication and I can often misinterpret what people think of me/their emotions, ( due to having autism ) this can trigger my RSD (rejection sensitive dysphoria ) which in turn affects my interpersonal/relations in and outside of work on a frequent basis ( adhd ) and medication can not control this. 

Ironically one of the things that was stated on my letter which told me my application had been declined, is that I don't have any occupational therapist intervention OR that I don't have therapies specifically for my conditions, even though It's not something that has ever been offered to me, despite me requesting this through my drs ( this is on my medical record ) 

I nearly lost my adhd medication during my initial titration ( with concerta ) , because the titration nurse suggested on the portal that my needs are to great and perhaps this service isn't catered to those, which would have been a detriment to myself and which also suggests that the coping strategies ( the pip assesor ) claimed that I have in place, clearly do not seem to be reflected in the report left by my clinician left on my portal.

I really need some advice and help, I am furious, upset, deflated and don't know where to turn.

If anybody could let me know if they have managed to be in receipt of pip and circumstances sound similar to my own, I would be so grateful to hear from you.

Thankyou so much for reading.

Comments

  • WhatThe
    WhatThe Community member, Scope Member Posts: 969 Pioneering
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    Hello smileysun, what a lovely name :) you've put your thoughts into words so well and I can identify with much of what you've said - you couldn't be any more authentic! People get confused when we're articulate. Written is different from spoken communication and I find it harder too.  

    another thing which was stated on my letter is that I don't take medication for 'autism'  :o  


  • Albus_Scope
    Albus_Scope Posts: 4,322 Scope online community team
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    Hiya @smileysun and welcome to the community!

    Please don't feel like a phoney, as an autistic myself, I can empathise with your struggles.  If you're having issues with getting things down on paper, I really recommend the app "Goblin Tools" I think it's about £2 on the Android store, I think it's on the Apple store too?  It has a great "Formaliser" section that will take your random thoughts and put them into a more formal format, so it's perfect for things like letters to the DWP.

    If you wanted to continue your claim, you can ask for a Mandatory Reconsideration, then if that is not upheld, you can go to a tribunal which currently has a 68% success rate and tends to be a lot easier than the actual DWP assessments. There's information on our site here which talks you through the process and we're all here for help and support if you need it. :)

    Also, medication for autism?  That's a new one to me. That sounds like the assessor has no clue about autism!
    Albus (he/him)

    Online Community Coordinator @ Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.
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    Opinions expressed are solely my own.
    Neurodivergent.
  • smileysun
    smileysun Community member Posts: 21 Courageous
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    @WhatThe
    @Albus_Scope I just wanted to say thank you for your fantastic reply :) I appreciate it. With your help, I was able to complete my letter of refusal using the links you forwarded to me. Now, I am just waiting for their reply. Your understanding of my situation has been very helpful to me. It was a tough day when I received that letter, but I am grateful that you and others understand where I am coming from. Perhaps I am judging myself too harshly. Regardless, thank you again for your help!
  • Albus_Scope
    Albus_Scope Posts: 4,322 Scope online community team
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    So glad things are on the up @smileysun, that's honestly amazing news.  We are all our own worst critics, so a little bit of understanding can go a long way. :)  Will you keep us updated please? 

    If you wanted to stick around and have a chat to take your mind off things, our Coffee Lounge is always great. :) 
    Albus (he/him)

    Online Community Coordinator @ Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.
    Want to give us feedback? Complete our feedback form now.
    Opinions expressed are solely my own.
    Neurodivergent.
  • MikMcMikal
    MikMcMikal Community member Posts: 6 Listener
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    Unfortunately these days the main aim of the assessor is to find a reason why not, instead of a reason why.
    I used to get DLA but lost it when I moved to Spain, since returning to the UK I simply haven't bothered re applying as I know the multiple hoops I'll need to jump through.
    The onus seems to be on "us lot" proving to "that lot" that we deserve our benefit.
    I'd suggest you stick at it but hope for the best but prepare for the worst, anyway it looks like you are doing great in life because you are proactive.
  • poppy123456
    poppy123456 Community member Posts: 54,396 Disability Gamechanger
    edited April 12
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    The onus seems to be on "us lot" proving to "that lot" that we deserve our benefit.

    No, not at all because no one "deserves" to be awarded PIP. (myself included) We are awarded because we are entitled to it and scored enough of points needed for an award. 

    The onus is always our responsibility to prove we qualify, not theirs.
    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.

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