So I’m not one to boast (honest!) but I like to think of myself as a reasonably intelligent person. I have a Masters degree. I’ve worked in housing and youth work and at various points I’ve worked in a professional capacity with benefits offices, social services and housing organisations. I’ve written benefits forms for almost every benefit there is at one point or another, and I feel pretty confident that I know how the benefits system works.
And I’d like you to bear the above in mind when I say, trying to organise my PIP appeal is not easy.
My “bundle” arrived in the post a few days ago. This is the pile of paperwork the DWP send you when you say you’re going to a tribunal to challenge their decision. Because the tribunal is handled by the courts, the DWP has to give up any documentation they have for my PIP application so we can look over it and make my case for qualifying for PIP. Firstly let’s cast aside the fact that 99.9% of the 183 pages I was sent I already have. When they say you are sent a bundle that’s literally what you get. A wodge of A4 papers. Consisting of any application forms you’ve done, any supporting documentation you’ve sent, any assessments you’ve had, anything and everything they’ve used to assess your PIP claim.
And that’s it. You’re sent the info and that’s all you have. The rest is up to you.
Luckily, I already know that there are places that have a very high rate of success if you go to them for support with your tribunal. I know that if you have someone representing you at the tribunal you’re more likely to succeed. I know that I could use various local resources – Citizen’s Advice, the local Law Centre etc. – to help me put forward a good case at tribunal and so increase the likelihood of it being successful. I have the knowledge and the ability to be proactive and to go to the right places to get support in doing this. But even with all my background working in this area, I’m still finding it confusing.
I wonder how many claimants who should be receiving PIP stopped at the first refusal letter, because they didn’t know what mandatory reconsideration was and they didn’t have the support to apply for it. I wonder how many found the court form to request a tribunal far too confusing and just couldn’t do it. I wonder how many people on hearing the word “tribunal” were terrified at the thought of having to go to a court and argue their case. And I wonder how many people upon receiving 180-odd pages of meaningless paperwork just felt they couldn’t deal with the stress of it all. I can see why.
I almost feel lucky to be in the position I’m in because I know how to jump through the hoops. The system is set up to fail everyone who isn’t able to do that. This process is designed to confuse. It’s designed to be impenetrable to anyone who doesn’t already have a complex understanding of the benefits system. It’s designed to target those who are most vulnerable, who are struggling the hardest and who need the most help. It’s designed to make them give up.
This morning I woke up, lay in bed for a little while on my heat pad in an attempt to warm up, then got out of bed and went to make breakfast. I ate my porridge in front of my computer as I often do, and took to Twitter complaining that as it was raining I had lots of pain (also as I often do!) I ate my breakfast and took my medication, which included Naproxen and Tramadol. I complained on Twitter a little more and empathised with others also experiencing a chronic pain flare up in this rainy weather.
My best awake time is in the morning. So I began doing some work as I knew after lunch my brain would turn to mush and I’d probably have to go to bed for a while. My husband went to empty the postbox and lo and behold I had a brown envelope.
My PIP reconsideration hasn’t been successful, I’m going to have to go to appeal.
I don’t even have the energy to feel massively angry about it. I’m just tired of it. More paper, more assessments, more trying to prove that I am actually ill and I don’t sit around for most of the day doing very little because it’s fun (it’s not fun). What can we do other than go “righto then” and get on with it. Anything else requires too much energy and I don’t have much of that right now.
So. Righto then. On we go.
On September 21st 2015 I had a letter telling me my Personal Independence Payments had been stopped after my re-assessment. On 12th October, I put in a written request for mandatory reconsideration of my claim.
I called the DWP last week, a month after I’d sent the letter. They found it on their system, and the person I spoke to on the phone told me they’d basically forgotten about it. It had been scanned and entered, and then left.
Today I called again. The decision still hasn’t been made. This time I was told it could take up to nine weeks for a decision. Which is halfway through December. Just shy of three months after my PIP was stopped.
In this time, surprisingly, I have not magically become better. I have not adapted to life without PIP because, funnily enough, I kinda need it. My extra financial requirements have not disappeared. But now I don’t have the cash to meet them.
My PIP paid for my weekly gentle yoga classes that helped me move and got me out of the house. It paid for a bus, it paid for me to park the car. It paid for me to use the local Shopmobility services when I went out. As a result of me losing my PIP our ESA payments also went down. This means I now cannot afford the yoga class, or transport, or much of anything really for the moment. Losing my PIP – albeit only temporarily, I hope – has meant I’ve lost a lot of my independence. I cannot afford to get out the house. I cannot afford to go to places and meet people. This is how people become isolated – it takes sick and disabled people more energy than most to get out the house in the first place. If they’re constantly worrying about if they can afford to, that’s not going to help.
I’ll be alright – I know how to fight this and if it goes further and I have to appeal, well, I can do that. But it’s not fun, and it’s not easy, and I’m ill and I’m tired. How am I going to make myself “work ready” if I have to spend all my very limited energy fighting for the basic stuff I need to be able to live my life? Removing essential money from sick and disabled people doesn’t make them more likely to succeed, it won’t make them more motivated to go out and work. In fact, it is doing just the opposite. We’re all very tired of fighting.
It’s a well-known piece of trivia that Ian Duncan Smith does not like disabled people. He actively puts forward policies that ruin lives – the Bedroom Tax, the “fit for work” tests to name but a couple. However he’s now decided to come out and be completely truthful about how he feels about sick and disabled people.
He feels they deserve to live in poverty.
Disabled people should have to work their way out poverty and not simply be taken out of it by state financial assistance, Iain Duncan Smith has said.
The Work and Pensions Secretary said it was not the role of government to pay the disabled enough to stop them being poor and that the correct way to escape poverty was by working.
This is a HUGE attack on disabled people. This is the Work and Pensions Secretary saying “you deserve this”. Saying “you are lesser than everyone else because you cannot work”.
“We won’t lift you out of poverty by simply transferring taxpayers’ money to you. With our help, you’ll work your way out of poverty.”
This is IDS creating a “them and us” situation. “We” are the taxpayers, “we” are the hard workers, “we” are worthwhile, productive people. “You” live off our dime, and “you” are getting handouts from our pockets. “You” need to work harder, because the reason you’re in the situation you are is because of your own personal failing.
Showing an enormous ignorance about disability, IDS is suggesting that disabled people don’t work because they are not encouraged to, because they are not inspired to, because “…when the system makes doctors ask a simplistic question: are you too sick to work at all? If the answer is yes, they’re signed off work – perhaps for ever.”
(IDS has clearly never tried to sign off sick…)
These statements are ignorant at best and dangerously damaging at worse. He the person who is in charge of ensuring disabled people are able to live by providing enough for us to do so, he is the one holding the purse strings. Disabled people who ARE able to work need so much more help and support – they need MORE money. And those who cannot? Should not live in poverty just because they are in a situation that they have absolutely no control over.
Last time I wrote about having my Personal Independence Payment assessment I said it felt like an exam I had to pass. As it turns out, this time I seem to have failed.
Yep, after doing my renewal application for my PIP, I was declined. I was half expecting this anyway but it still came as a shock. So now comes the mandatory reconsideration period and the appeals process. I’ve also requested a copy of my assessment to see if it’s as comedic as the last one was.
As an ill person, the expectations the DWP have of me are a bit confusing. I’m told that in order to be a productive member of society I have to work, that working is the best option for everyone and that their aim is to get everyone working. Yet, as soon as I try and be productive and proactive, I’m told I’m not ill enough to be receiving any help. Which means you cannot win. You cannot be productive while also being ill as the DWP don’t have a box for that. You can’t be a professional, an educated person because if you’re able to be educated and have a profession then you’re clearly not ill. The truth, as it always is, is far, far more complicated than that.
Me doing an MA does not means I don’t still have chronic pain. The fact I can write a blog entry doesn’t mean I won’t have to go to sleep for the afternoon due to chronic fatigue. Reading a book doesn’t mean I don’t need my pain medication. You’re told to be productive yet that means you’re not ill. If you’re ill you’re told you have to be productive.
**DISCLAIMER: All the opinions and experiences in this post relate to me. Everyone’s experiences of disability and illness are different and no two people will have the same views, opinions and feeling about the topic.**
Next month, I won’t have worked for two years. It really doesn’t seem that long but it also really does seem that long. I wouldn’t be lying if I said that I don’t know what happened to 2014 and 2015 – a year spent working out what my illness does and how I could live with it, and another year trying to get myself back to as “normal” as I could be while still making accommodations for my condition. Time moves fast when you’re doing very little, it seems.
I’ve had two ATOS assessments in that time, both for PIP. The first one was kind of a blur – I’d been ill for a few months, I didn’t really know what was going on, what medications I should be on, how I was going to pace myself, all the things that you eventually pick up and learn the longer you live with being ill. My second assessment was last week and it was a different experience. Not because it was conducted at home rather than at their offices, or because the questions were different (they weren’t) but because I’ve lived in this body with this condition for nearly two years and I know it a lot better now.
I’ve gone through different stages of dealing with being ill. For a while I was just “ill”. One day I could do something, then over the course of a weekend I just got ill. I can remember the weekend clearly as the Monday was the final time I went into work. Then you start looking for reasons and ways to help. Diagnoses, medications, pacing, reducing the amount you achieve in a day. Resting a lot. Sleeping a lot. Getting into the groove of “being ill”.
And then once you’ve got the rhythm of your illness – you’ve worked out that your big flares usually come a week after the event that triggers them, that if you spend the morning in town you’d better not plan any activities for the afternoon, that if you’re going to need to be clean and showered for some reason you’d best plan that into your previous day (also your definition of “clean” gets reeealllly loose…) – you start to live with it rather than fight against it. This doesn’t mean everything is roses and happiness, far from it. You get days of pain and days of exhaustion, you can’t drive as far as you used to or walk as far or be able to use your brain and think after 3pm. But you have what I called my “new normal” – and you forget that this isn’t other people’s normal.
I’ve found myself stuck in a really bizarre place. I’ve just finished a postgraduate degree and I’ve worked for ten years in a profession (granted the profession has been ripped to pieces by the Tories but I digress…) and so my desire is to work, because I love my profession and I want to be able to practice it. But then, you’re put in a position with your ATOS assessor where you have to describe in minute detail how you can’t always cook your own meals, how sometimes you don’t have the energy to wash your own hair, how someone else has to come in and do your vacuuming for you. I’ve found it very difficult to take both the realities of being a professional, and of someone who is ill and needs assistance and help with everyday tasks, and apply them to the same person – me. How can I be both those people at once?
And I know where this confusion comes from. Having an ATOS assessment makes you constantly second-guess yourself. Can I walk further than I said I could? If I can open a can now does that mean I can actually cook? Am I better than I was, am I more able than I think I am, am I being lazy? The constant second-guessing and the need to prove that you’re ill or disabled makes you stand face to face with the worst bits of your illnesses. I can’t leave the house for days, I can’t wash my hair more than once a week, I can’t cook my own dinners. It’s almost impossible, to me at least, to take that view of myself and pair it with “I’m a professional with a postgraduate degree and the desire to work”. The DWP make disabled and ill people justify the worst of themselves and then they expect them to “pull up their bootstraps” and make the best of the situation. After you’ve been repeatedly shot down by churning out all the reasons your mind and body is unable to work properly, under the fear that you won’t be believed, it’s a difficult task to turn that around and be motivated and positive.
But hey, maybe that was their plan all the time. Motivated and positive ill and disabled people get ideas and opinions and the means to express them, and we can’t be doing with that.
It’s strange, because obviously I have a lot of things to say about this. I have to go for another assessment after having been on PIP for just a year which really wasn’t expected, but they were a hell of a lot faster this time than last I’ll give them that. I’m going into this one having already had one assessment and so I know a bit more about how the process works, but I feel like I can’t talk about much of that at the moment. Because the internet has ears. And the paranoia of ill and disabled people is high. And I’m worried that my concerns about my assessment will be taken the wrong way. So instead, I thought I’d talk about something else.
I got ill almost two years ago now. It seems like yesterday and a lifetime ago at the same time. When I look back at how I was before I got ill, the work I did, the activities I did, how busy I was, it definitely seems like another life. And the problem with that is, the way I am now has become normalised in my mind. And so I forget that I still do things differently in order to accommodate my condition because I’m now not aware that I do them.
I don’t go into town because I know it’ll make me tired and I have things to do at home. I have to plan my showers days in advance sometimes, to make sure I’m actually, y’know, clean but to make sure I have time to rest afterwards. I get tired in the afternoons. I get pain and fatigue when it rains. I take strong painkillers, I don’t clean my own house, and just today I vetoed a trip to the supermarket at the end of the road because I felt in too much pain (even though I would’ve driven there rather than walked).
But that’s now my “normal”. I do all these things without thinking about it because it’s habit. Which worries me that I might miss them when I’m talking to the ATOS person.
Last time I said it felt like an exam. So I guess it’s time to start revision.