ATOS-ed Again

Just for my DWP diary, I will quickly note that I had another PIP Assessment two or three weeks ago. The actual appointment was far less awful than I was expecting (though whether or not the report they make from it will be remotely accurate remains to be seen) but the experience of getting to and from the building , getting around the building and sitting in the waiting room was awful.

We’d told them in advance that we needed wheelchair access and preferably a ground floor room. Whilst we did get seen in a wheelchair accessible ground floor room, the assessment centre was located really far away from any bus stops and there was no wheelchair accessible route to the building – the choices of routes where “walk on the road cos the pavement is too narrow for a wheelchair” or “Steep ramp up to another slightly less steep ramp followed by 20 metres of cobblestones and then cross the car park while cars are moving”. So, no, not wheelchair accessible at all really.
We spent over an hour in the waiting room, regularly being told it’d be another 10 minutes or so until we were seen. It was an extremely hot day – one of the hottest so far this year and it was hot inside too but no one dared to leave. One woman nearly fainted from the heat. My boyfriend eventually worked out that there was air-conditioning – they just hadn’t considered turning it on. He asked them to turn it on and they did but seriously, who expects vulnerable people to sit for hours in extreme heat and doesn’t think to use the air-con that is available?
And maybe I’m being petty here but: while I avoided the terribly uncomfortable seating by staying in my wheelchair, the seats were laid out in a pattern creating corridors between rows of seats and the pattern left no space for any wheelchair users to park. All three wheelchair users in the room had to just block of a bit of corridor at the end of a row and hope no one would need us to move. It was as if they didn’t expect us.
Another sign that they clearly didn’t expect wheelchair users was that all the internal doors had to be opened for me by two people for me to pass through. No “Press to Open” doors or large light doors with easy to open handles. Just heavy doors that I couldn’t have opened.

Like I said above, the assessment itself went much better than I’d expected – this time they didn’t ask me why I was still alive with my suicidal thoughts, didn’t ask me how I got PTSD and didn’t make me do any unnecessary physical exams (all of which happened at my first PIP assessment). But really I wish the constant assessments would stop and the fear of the next new and exciting way ATOS and the DWP can dehumanise me and threaten to impoverish me could lift.

My ESA is now £19 a week

You’re reading that correctly. The DWP has decided to give me just £19 a week to live off.
Yes, sure I still ge the PIP that I have been living off – but that’s money for my extra disability related expenses. It’s not for living off as I have been made to do since the end of September 2016 until this week – the end of February 2017.
So now I have £19 a week to cover my half of the groceries and the bills and my council tax and and and… So I’ll still have to live off my PIP.

I’m in the Support Group – they finally bothered to tell me (my Work Capacity Assessment was in October) – so I don’t get sanctions. So what’s happened to more than half the money I used to be paid to live from?
What did I do wrong to deserve this?

I GOT A BOYFRIEND AND WE LIVE TOGETHER.

That’s my “crime”. As far as the DWP are concerned, we are married (we’re not), his money is my money and my money is his (it’s not) and his “income” of a student loan plus mine of £19 a week is enough for two adults to live off (it’s not). But even if we were married and we did share finances and his income were enough for two, why should I be paid less when it is still just as impossible for me to work?

I’m in the Support Group. I’m not expected to look for work. I’m not expected to work. I have chronic, lifelong conditions that aren’t really expected to improve and can’t be cured. Employment Support Allowance, despite the name, is basically an income replacement for people like me who are not expected o be able to work for an income while ill – including those of us who might well be ill for the rest of our lives.
To take my only income away because my partner has money is… well I can think of a few words for what it is but I think I’ll go with “wrong”. It is morally wrong to force disabled people to rely on our partners.

IT IS MORALLY WRONG TO FORCE DISABLED PEOPLE TO RELY ON OUR PARTNERS.

My boyfriend is lovely. The DWP don’t know that. They don’t know what will happen to me once they make us so financially unequal that I have to depend on him for living costs. They don’t care: all they know is he has an “income” which is far below minimum wage – if he’d had a full time minimum wage job, we believe they’d have left me with no ESA income at all. They don’t care about making me live out of my PIP. They don’t care about whether he’d decide to spend all his money on himself and none on me and leave me to scrape by – financial abuse and other forms of domestic violence are extremely common in disabled people’s relationships. The DWP have no idea and no desire to get an idea about what this will do to me and him in particular or to disabled people across the country.

£19 doesn’t even buy an MP’s breakfast.
£19 doesn’t cover a taxi to and from the hospital.
£19 a week is my income. That’s £2.70 a day.
That couldn’t even buy me a lunch a day.

And the awful thing is, by the DWP’s own rules this is how the benefits system is supposed to work. This is not a mistake or an error. This is the UK’s “generous” benefits system in action.

If you want to help, messages of support are appreciated. Financial help in the form of buying things from my #disabilitywishlist here: http://www.amazon.co.uk/registry/wishlist/KKHWCC2WHEK9/ref=cm_sw_r_tw_ws_x_29ATyb29DYK3N or sending me coffee money via paypal here: www.paypal.me/yetanotherlefty

Journalists interested in talking to me, please see the Contact page.

How I am: an Update 

Hello readers,

I’ve missed you and I wonder if you have missed me.

A lot has happened since my last post. There’s no gentle or easy way to say it but my mother died. She had been very ill for a long time and in November 2016 she died. I don’t really want to write about that but it is important to me that you all know.

I did not know it at the time but while I and my family were trying to cope with my mother’s worsening health, her death and her funeral, the DWP had quietly stopped paying my ESA.

In fact, they’d stopped paying my ESA in September. Without telling me. Or giving me any reason why or instructions on how to fix whatever problem they had.

After several phone calls, we found out that we needed to fill in an ESA 3 form. That was before we realised that my payments had stopped. We weren’t told that the payments had been stopped until after we’d completed and returned the form and phoned them to ask if they’d got it.

They said that my payments would be backpayed and paid on the 20th of December. Which was 2 days ago.

I’m yet to be paid or even told in writing why my payments were stopped. All I did “wrong” was move house. I tried to tell the DWP in advance, sending letters to several addresses but none were received apparently. They heard from the local council that I’d moved and then stopped paying me.

They haven’t told me the conclusion of my WCA either.

I’m sure it will all be okay for me because I have a boyfriend who is able to phone them and chase it up until this is sorted.

So, yeah. Dear readers, that is why I’ve been quiet of late.

Another Work Capacity Assessment 

I’ve got a WCA this week.

I’m flipping rapidly from panic to despair to calm and back again to panic. Because I should get the right result but the consequences of the wrong result are unthinkable.

Astute readers will recall that I very recently had a WCA – less than a month ago. That one was cancelled ten minutes into the assessment because I have a condition that only a Doctor is allowed to assess and the assessment company had booked me in with a Nurse. The DWP or the assessment company or someone had lost so much of my information as to lose half of my conditions from my file.

The reaction of the staff at the assessment centre suggested that this was not an unusual event.

So now I have a work capacity assessment this week.

Another Entry For My “DWP Diary”

Sometimes this blog of mine is just a diary of my interactions with the DWP. I’m even considering going back and tagging such entries “”DWP Diary” for ease of reference.

I got a letter this morning inviting me for a(nother) face-to-face assessment – or Work Capacity Assessment scheduled for three weeks from now. Already I am feeling powerless and scared. I’ve done this before and I know it’ll probably go my way but the potential consequences if it doesn’t are terrifying. If I were to somehow end up in the Work Related Activity group, the results could even be life-threatening. It’s a heck of a huge thing to have to try to keep from thinking about. I got the right award last time. I’ve only got more ill since then. I’ll be being backed up by my boyfriend and by letters showing that I got referred back into long term therapy *partly because my GP and therapist expect my mental health to plummet in response to being reassessed*. Yeah.

I suspect it will all be terrifying and awful and make me very ill… and get the right result because it’s pretty obvious what the result should be.
But nonetheless, the system is set up to put me through this torturous examination of every task I need help with and why and ask me these same questions every couple of years.. quite possibly for the rest of my life.

How can anyone think this is a good idea?

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.

PTSD and Disclosure

Rather than continue with the demoralising and exhausting task of writing down all the little things i struggle with for my Disability Living Allowance form, I’m going to put it aside for the night and write a blog post that’s been going round my mind for a week or so.

I have Post-Traumatic Stress Disorder and I’ve been fairly open about my diagnosis since about six months after I received it (prior to that I kept things between myself, my therapist, my girlfriend and some carefully chosen close friends). If I feel up to it, I will describe how my PTSD affects my life, how I cope with it and even what it was like at its worst. I can and will talk about what it’s like because I know that there’s a heck of a lot of other people quietly going through the same thing and *someone* has to be willing to talk about it and that might as well be me.

There’s something that I don’t talk about though as a rule. I don’t answer any form of the question “What caused your PTSD?”

Unlike most other mental illness, PTSD is caused by and about something that happened to a person. Depression typically isn’t “about” anything at all, it just is. Anxiety can come out of nowhere. But PTSD is an illness that means that at some point in your life something awful has happened to you, typically something that made you feel like you were going to die. An event or multiple events that either snatch away suddenly or slowly erode your sense of being safe and leave you with the feeling that you will never be safe again – that’s how you end up with PTSD.

So, people are curious. And I sort of understand that. But. Please, please if someone you know discloses to you that they have PTSD do NOT ask them “What caused your PTSD?”. Don’t ask “How can you have PTSD?” or “Why do you have PTSD?” or “How did this happen?”.

Just don’t.

Got that? Don’t.

Even if you are really close to that person. Even if you’re shocked. Even if you can’t think of anything bad that ever happened to them. Do. Not. Ask. What. Caused. Their. PTSD.

If they feel able to tell you, they will. If they want to tell you, they will. If you really need to know, they’ll tell you.

It takes a huge amount of courage in our society to admit to struggling with mental health problems at all and PTSD is a particularly difficult mental health problem to disclose for many reasons. Not least among them is that PTSD itself can make trusting people incredibly difficult and the fear of perhaps having to say out loud what happened to cause it and risk triggering a flashback. There’s also the fear of not being believed – a significant and loud minority of people think PTSD is a “made up illness” invented either by people who wanted to claim disability benefits or by drugs companies in order to sell more pills. Then there’s the shame – the feeling that your past shouldn’t still be affecting you after all this time. It takes bravery to say to anyone “I have PTSD”.

So, if someone tells you about their PTSD please remember they’ve thought about it for a long time and decided they want you to know. During that thinking time they’ll likely have thought about how much they want to tell you about the cause(s). They may have decided, as I have, that you don’t need to know.

Asking puts people in the difficult position of either refusing to answer a direct question or giving you sensitive information at a time when they feel vulnerable, scared and disinclined to trust people.

So; I’ll turn this round on you. Why do you want to know?

  • You’re just curious / just making conversation. That clearly isn’t as important as making sure the person with PTSD feels safe. Try saying something supportive instead like “That sounds very hard for you. Is there anything I can do to help?” or “Would you like to talk about it?” or even “I’ll make a pot of tea”
  • You want to help and feel you’d be more useful if you knew exactly what you were dealing with. See above for ways to help. The person with PTSD is better placed than you to judge how much you need to know. Ask specific questions like “Would you like me to read reviews of the film before we go? What kind of content might you need warnings for?”
  • You don’t believe them because you’ve never seen or heard of anything *really* bad happening to them. First off, it’s close to impossible that you have actually been with this person every second of their life unless you are their conjoined twin – and even conjoined twins could have been affected very differently by things that happen to them. Lots of things could have happened while you weren’t watching or you may have misunderstood the significance of events that happened while you were. If you don’t know what the bad thing/s is.were, then perhaps the person has deliberately kept them from you. They have the right to do this, to protect you or them or someone else. You don’t have any right to this information until and unless they want to tell you. If you’re surprised say something like “This is surprising news. I thought you were okay / I knew things were bad but didn’t know things were this bad” or stick with being sympathetic and helpful – even if you don’t believe it. It’s better to assume they’re telling the truth than accidentally confirm their belief that they can’t trust anyone and should keep these things to themself.
  • You’re worried that something you did caused this. That worry can wait. Be sympathetic and helpful or excuse yourself if you can’t. I understand the worry but it’s not a question for the first time someone talks to you about their diagnosis.
  • You can’t think of anything else to say. Be honest and say “I don’t know what to say”

What I want you to know about PTSD before you encounter someone else with the diagnosis – especially someone newly diagnosed – is that you need to trust them to work out what they want to tell you and when. On their terms, not yours.

My terms involve not telling most people what happened. My own family don’t know what happened and I intend to keep it that way until and unless it ever feels appropriate to actually tell them. Your terms or your friends’ terms may be different but that’s ultimately up to each person living with PTSD to decide, not the people around us no matter how they know us.