How I’ve Been – What Applying For Benefits Is Like

TW: Frank discussion of worsening mental illness, ATOS

Hello readers,

It’s been a little quiet around here for a while and if you follow me on twitter (I’m @autistliam) you might have an idea why. I’ve spent the last few months trying to find out what is happening with a claim for disability benefits I made over 6 months ago, whilst at the same time trying to fill in the forms and provide evidence for two more benefits I’m eligible for *and* manage my social care *and* get to all the doctor and hospital appointments I have to go to *and*… well, and have a life. I have friends and family and lovers to spend time with, books to read, films to see…

And because of the horrific bureaucracy I’ve found myself having to grapple with, I’ve had to do all that whilst living on less than £25 a week, perpetually wondering whether this is the week I’ll hear good news or whether I’ll have to ask my Uni for yet another crisis loan just to keep myself fed. It turned out that this week was finally the week that I have been awarded PIP – Enhanced Rate Care, back dated to cover most of the time I’ve spent living on as little as possible. It’s a relief to finally have it (even though I need to appeal the decision NOT to award me any Mobility payments) but it doesn’t really make up for what I’ve been put through.

It’s been a whole year since I started filling out a DLA form that took me five months to complete, working around my postgraduate degree and around treatment for my yet-to-be-diagnosed chronic illness. I sent that form just ahead of the deadline for the PIP change over but the DWP decided that I would be assessed for PIP anyway – for their convenience, not mine. They sent me a new form and just four weeks to fill it in. Overtaken by stress and despair, I considered killing myself and started self-harming after not doing so for months, saw my GP and was put onto antidepressants and considered quitting my degree but thankfully opted instead to take a year out. That was in May, I’ve been signed off as too ill to work since then but as I never had a job in the first place my sicknotes don’t get me any money. I managed, somehow, to fill in and return the PIP form – complete with over 12000 words of additional information and several sheets of evidence, within the four weeks they asked for. They never acknowledged receiving the form. I next heard something in July, when I was asked to attend an assessment with ATOS on the fifth of August. I arranged for my partner to be available to take me to the assessment and stay with me. I survived the misleading questions and attempts to catch me out in an over two hour long assessment – during which I had a small meltdown, was asked simple arithmetic questions, had my sight in both eyes tested after explaining that I can only use one at once and was asked to explain what triggers my PTSD and why and how often I harm myself and how often I consider killing myself.
After that, I heard nothing for a month. I had no money coming in and had to ask my Uni to loan me a month’s rent in order to have anywhere to live. My advisor phoned the DWP. ATOS had not sent them a report about my assessment yet. Try again next week.
That was early September. Since then, I’ve been trying again next week *every week*. The Uni has given me two more loans to keep me housed and fed. ATOS took seven weeks to get my assessment report to the DWP. They didn’t tell me they’d received it. It took almost another month before they looked at it and made a decision. They didn’t tell me about that either. I found out today by having my advisor phone them to ask them whether the £1600 that had appeared in my account was actually for me. Apparently it is.

The last year hasn’t quite been Hell (I’ve seen Hell and it’s much worse) but the precarity of always being told that things will be okay soon with no clear idea of when “soon” will be is certainly torture. My mental health has been affected and I have needed to start antidepressants, needed to ask friends to help keep me alive by making sure I eat or by sitting with me when I’m struggling to keep myself safe. I suddenly have some money and an income and can afford to eat better and to buy things but so long on less than £25 a week has made me forget what I even wanted.
I suspect it was to replace the clothes that I have worn through. Perhaps it was to eat in my campus bar every now and then or maybe to buy more than one drink at the pub. I need to replace my passport and haven’t been able to afford to.

Before all this, I was doing an MA and considering volunteering or part time work. Right now, I am doing neither as all my energy goes towards trying to sort out my benefits, social care and health. Being too ill to work is a full time job in itself.

This ordeal has changed me. It’s not been as hard as it would have been if I were not a student, I’m very grateful for help received from University Welfare Services, friends and partners and hundreds of supportive people on twitter. I hope to get my life back on track soon, I’m going back to Uni properly in May and I hope to have my PIP, ESA and Housing Benefit sorted by then. If things are sorted soon, I’ll look into volunteering.

In the meantime, I’ll try to write. I have been so scared to write this, so worried that somehow it would affect the result if I wrote this blog post before getting my first payment.

EDITED TO ADD:
As this blog post is going much further than I ever expected it to, I’d like to clarify some things that I didn’t make wholly clear.
Firstly, PIP is a benefit you can get whether you work or not. The out-of-work benefit for UK disabled people is ESA and I’m currently filling in the form for that and will have to have *another* ATOS assessment in the next three months for that.
Secondly, the people who told us repeatedly to “try again next week” were *DWP and ATOS staff*. They told my advisor every week that I’d get a decision the next week – for over two months.
Thirdly, without my advisor at the Uni phoning them for me I would *never have heard anything* from the DWP between August and now. And I would have no money to afford to phone or write to them either.
Finally, I just want to repeat that I have had fantastic support from my Uni, my friends, my partners and my doctors. Other people *will* be facing this alone and we need to find ways to find them and help them.

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10 thoughts on “How I’ve Been – What Applying For Benefits Is Like

  1. Thank you for writing this. I totally get that you would be scared to put this out before you finally got your income sorted. The average person just has no idea what going through these applications and assessments is like. I had a 7 month period of reduced income (and no income at all for a while) when I had to go through appeal for incapacity benefit. Like you, I experienced quite a decline in my mental health.

    Glad you got it sorted in the end and hooray for your university for providing support.

    Thanks once again for speaking out.

  2. I’m sorry I didn’t comment on this sooner, but thanks for writing this so very well.

    It’s actually something that, as a veteran of the benefits system, it’s easy even for me to forget. Yes, there are these layers of crap and in recent years – especially with the involvement of ATOS, they’ve got even crappy. But having been through the mill a few times, you forget how it can be the first time.

    I think very many people facing this alone – not necessarily because they have no friends or family around, but because they have no friends or family who are able to support them in these ways – simply give up. I also think it must be harder for newly disabled folks who don’t know any other disabled people. For them, it must feel so personal.

    It can be disheartening and sometimes frightening to hear about other people’s bad experiences. But at least we all know we’re not alone in this, and the treatment we receive isn’t a personal attack on us (the first time I was refused DLA, I was 16 and it felt as if the entire state did not believe the account I gave of my own condition).

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  8. hello, that’s a moving article, I wish they stopped putting you through that. I am tempted to ask which uni you go to, because they sound much more humane than mine are to students who take time out – they would rather I was out on the streets than help me, despite the millions they spend on parties and buildings…

    I’m applying for PIP too and I wish you the best of luck in everything.

    I have PTSD, anxiety and depression too and I am really hoping my assessment will be less of a nightmare than I have heard everywhere! Currently, I have zero income and zero HB — I totally recommend foodbanks and community meals!

    Thanks,

    Best wishes,

    Lisa

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