I can’t take this any more.

wizboque

I genuinely cannot take the endless battle with the government to be able to afford to live.

I was diagnosed with Asperger’s in January 2020 and found out about PIP around October the same year.

I applied, was rejected because I didn’t know the process but the woman lied in her report about my medication and the fact that i didn’t ask questions (even though i did) so I won my appeal.

I never actually saw the points they awarded me, I was just happy to have some money to live on.

a year later I needed a copy of my PIP point breakdown for something and I noticed I’d still not been marked correctly, so I asked them to reevaluate. I also developed long covid in this time.

they did an unplanned intervention and have now decided that I’m no longer entitled to pip, despite my condition worsening.

the most frustrating thing is the assessor took the notes and purely ignored the marking criteria.the assessment notes literally state that I have sensory issues with water so I require multiple Prompting  to force me in, i struggle to remember to change clothes without prompting and dress appropriately, I don’t eat without prompting etc. they acknowledge that I hyperfixate and neglect everything else.
I do not have the notion in my brain to do anything outside of my fixation.

I also am still suffering from long covid. I struggle to breathe on one side of my chest, my brain is all over the place and my memory is awful. I’m also exhausted by the smallest things. I have good days and bad days (or weeks).

the assessor has also stated that I only receive support from my gp, when I know for a fact that I told her that I speak to my gp, the mental health lady at my gp, the long covid clinic who in turn referred me to the crisis team. I mentioned that I speak to SCOPE and that I have a social worker currently being assigned to me too.

The crisis team sent a note to my gp to request my medication from the pharmacy in blister packs because of my memory issues. That’s noted but no points for help with managing therapies. They said I have medication that I stated helps me, but I rarely take it due to memory issues so it doesn’t help at all. The doctor is aware, he says I need to work on consistency. They then go onto say I receive no anxiety medication?

they say that I have no support for long covid but I told her that I’d recently been booked in for blood tests for long covid but fainted during them, I’ve been referred to a consultant on Christmas Eve but no mention of that either. They’ve said no mention of breathlessness and although anxiety was noted there was no signs of psychological distress. I’ve not been able to stop thinking about the assessment since then, I’ve called them multiple times to say I have extra evidence (mainly my long covid letter from the specialist nurse) and that I want my social worker involved last week and they said I had up to 8 weeks to send it in still. I received the decision to remove my pip today.

the thing that gets me most is that they say that I had a good rapport with the assessor but I felt like she was quite intimidating on the phone. I remember her getting frustrated with me a lot.

The government is going to push me to kill myself because I can’t handle the stress of their obvious desire to prevent people who are struggling from getting help. I couldn’t afford to live in the first place and now my pip is gone.

I know I will win the mandatory reconsideration because they’ve completely disregarded everything in the notes, but that’s another month of not being able to afford to eat and the mental anguish that comes along with it. I can’t take it any more.

chiarieds

Hi @wizboque - it looks like you've put in for a 'change of circumstances,' as you say, 'I asked them to re-evaluate.' Unfortunately this should not be done without getting advice, as your claim is then looked at again. Despite your condition worsening, unless this means you may gain points with the activities that are looked at with PIP, then it's not always best considered.

Unfortunately, as best as can be described as 'inaccuracies' are often seen with PIP assessments. Please try to put this behind you & seek advice from support local to you: https://advicelocal.uk/  choosing 'Welfare benefits' from the drop down menu. Such support may help you to further your claim, tho I must say that the success rate with a Mandatory Reconsideration is currently low. However the success rate with an ensuing tribunal is around the 70% mark if you appear in person.

Try to stay strong & take care of yourself.

Adrian_Scope

Hi @wizboque, I've just sent you a quick email. 

wizboque

Deppi said:

@wizboque , first breath, you are not alone. I have Asperger's as well, diagnosed in 1995  (yeah, old dog). I lived all my life from stigma, to hidden disability be it neighbours, employers, government etc etc

I want to focus on one thing, as you certainly have lots and good points to argue on MR and if it happens during appeal. You say: "although anxiety was noted there was no signs of psychological distress"

I will assume (can be wrong) you have autistic meltdowns. Whether you did report it or not, it is important to bring focus on it.

DWP has a major problem, they do not understand, that a meltdown is preceded by overwhelming psychological distress. This is your MH starting point, and from there you can work your way around the descriptors subject to your own situation.

Please revisit that, and keep in mind, only the tribunal and if lucky the appeal officers who might make an offer, will grab the importance of that, which you know exactly what it means as an autistic person (using autistic, as per DSM5 as you know, Asperger's has merged in ASD).

I will not give you the standard questions etc re killing yourself, and i will say, Asperger's makes you highly intelligent and you will recognise taking those thoughts aside is best. I am certain you are a fighter, and if you wrote above that, it may be on the rumble of an anticipated meltdown, and sure you will not act on it, or injure yourself. Take it from me, i am 55 and I have fractured hands, wrists, toes, legs many many times. So, i get it, i feel you. 

Please, try to focus to something else, and come back to it, in 5 minutes, or 5 days. It worked before, you made it work, it will work again and you will get your award.

I will be thinking of you.

Hi Deppi,

Thank you for your kind words, you are right in knowing that I haven’t harmed myself, I am just so overwhelmed because I cannot comprehend how they have come to the decision and I can’t afford to survive as it is.

Whenever I’ve tried to reach out to the few people in my life who I feel comfortable enough to talk to, I’m met with frustration and anger, which in turn makes me feel worse about my own shortcomings.

You’re correct in assuming that I do have autistic meltdowns, though I refer to them as panic attacks. I definitely mentioned that I have them during the assessment because I remember her asking me how they presented themselves. There’s no mention of that in the notes either. My partner mentioned that they happen and I’ve hit myself in the past during them at the end of the call.

The whole process causes me psychological trauma if I’m being honest. I have trouble with my perception of time passing and often miss deadlines because of this, so I I usually stay awake overnight if the appointment’s early…

My appointment was on a Tuesday, I thought it was Monday… I stayed up for 2 days because I couldn’t risk sleeping and not waking up for the assessment. Ever since I’ve not stopped worrying about it.

I’m also in the middle of a 2 year battle with my UC Tribunal so it’s not just PIP, it’s just constant resilience from the government. (Supplied for notes for over a year before getting my appointment, they then rang early morning to ask if I was available to take the assessment between 2-6 and then rang me back 5 minutes later to do it anyway?) I caught covid during the time and still haven’t recovered. I told the pip lady about the long covid clinic, had been referred to spirometry and a consultant on Christmas Eve but apparently I’m not receiving specialist support for that.

My partner now hates me because all I can do is fixate about these applications, but she’s also very unwell and is constantly in and out of hospital (T1D, CVS, Autonomic Dysfunction ~160/365, 5 days in, 3 days out, for months…) so the stress of this too is just overwhelming.

I’ve also realised that there’s no mention that I have trouble crossing roads due to a near death experience in the car last year. We didn’t crash but something happened to the engine as my partner was on the motorway, we lost control of the brakes and steering and we hit an adverse camber? Started veering across 3 lanes of traffic and we were probably 3 inches from crashing into another car. Somehow made it out unscathed. We had bought the car 4 days prior and we had week insurance with no breakdown, so we were stranded until we managed to find our bank cards… which were in the boot of the car… ever since, cars going past me fast freaks me out. 

I told the assessor about this but no mention again.

So not only are they not noting things down but the things she has written down are very obviously relevant to the marking criteria but I’ve gotten 0 marks and it’s another appeal to prove to them that they’re wrong. 

It’s just… maddening.

whilst I’m ranting I hate that they assume a certain level of competence when you say things. I try to make music on my computer and do not know musical scales, I pick sounds and find patterns that I think sound nice, but by saying that they assume I’m Beethoven.

I do not think I am stupid, I am just incapable of having the notion to do anything outside of my focus. I’m very much out of sight, out of mind. Due to that, everything aside from using the toilet gets neglected unless I’m prompted. The brain fog and exhaustion post covid really do not help because I get confused between steps a lot.

wizboque

chiarieds said:

Hi @wizboque - it looks like you've put in for a 'change of circumstances,' as you say, 'I asked them to re-evaluate.' Unfortunately this should not be done without getting advice, as your claim is then looked at again. Despite your condition worsening, unless this means you may gain points with the activities that are looked at with PIP, then it's not always best considered.

Unfortunately, as best as can be described as 'inaccuracies' are often seen with PIP assessments. Please try to put this behind you & seek advice from support local to you: https://advicelocal.uk/  choosing 'Welfare benefits' from the drop down menu. Such support may help you to further your claim, tho I must say that the success rate with a Mandatory Reconsideration is currently low. However the success rate with an ensuing tribunal is around the 70% mark if you appear in person.

Try to stay strong & take care of yourself.

Hi Chiareds,

I’m also being treated (or at least… scheduled to) for long covid and my mobility is severely impacted. I’ve got a hyper inflated lung which causes me to feel breathless on one side of my chest and my memory has declined seriously. I also feel like I have a stretch that I can’t fulfil constantly so it makes sleeping very difficult, my appetite is even worse and I feel weak all of the time.

I have all of this documented in a letter from the long covid clinic’s specialist nurse, and I called PIP twice to say that I plan on sending the evidence and they said that I still had 8 weeks to send it, last week.

I told them I’d just been assigned a social worker and I wanted to know how she could help with my application at the same time.

The same week they sent me a letter removing my pip.

I think I’m going to upload some pictures of what the assessor said and the marks they gave me

wizboque

Adrian_Scope said:

Hi @wizboque, I've just sent you a quick email. 

I replied I think

wizboque

@Deppi I see, I guess that’s where I went wrong. I just feel like there’s a negative connotation around the word “meltdown” so I try not to identify with it.

my partner is actually the one who brought up the punching myself etc. at the end of the phone call but it seems like she took note of nothing my partner said whatsoever.

I definitely did talk her ear off but there were other times where I heard frustration in her voice and when that happens then I tend to recede in and just kind of say yes, I’m not very experienced at navigating conversations without a screen and time to think.

I do not actually recall saying that they help, I’m fairly certain that I said something along the lines of I am sporadic with my medication due to my memory being poor, the doctor requested that I get them delivered to the pharmacy in blister packs to help with my consistency taking them.

My partner also mentioned that she prompts me but again no note of her input at all.

it’s all very frustrating.

I think once my social worker has a chance to look at it all then it will be easier but because it’s the weekend there’s nothing that can be done right this second.