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.
I spent more than half of 2014 blogging about the ongoing saga of my PIP application. I first applied in January and through a complicated form, a poorly-recorded assessment and nearly nine months of waiting I finally ended up getting a disibility benefit.
Twelve months later and it’s time to go through it all over again.
Yes I have the photocopies of the last form. Yes I still have the Word file with all my written answers in, and copies of my letters. Yes I know they hopefully won’t ask me in for another assessment.
But still. Another few months of wondering how long it’ll take and if I’ll actually be re-awarded.
I’m still exhausted from the last time.
Today I received the most entertaining and most depressing document of my life. The ATOS report for my Personal Independence Payments assessment.
You may remember I went for my assessment back in July. The guy who assessed me was really nice, he was relaxed and chatty and not like a driving examiner or someone terrifying, so I’m going to give him the benefit of the doubt and say that the document I received today was not due to his incompetence, but due to a broken system that does not allow people to do a good job.
Or spellcheck their documents, apparently:
“…she will manage to put out a bowel of cereal for herself.”
Right. Sounds…disgusting, really.
The guy was typing this as I watched so I know he didn’t try to type it with his head or with both hands tied behind his back.
“Has who cats”. I first interpreted this as meaning I had cats who were in the band The Who, until it was pointed out to me that it probably meant my cats were actually Timelords.
So yes, funny funny ha ha, until I realised that this document was about my life. This document was being provided to someone who would look at it and make a judgment on my quality of life. And there wasn’t even enough time to make sure it had proper spelling and grammar. In 28 pages I counted 31 spelling and grammar mistakes. And that doesn’t even count the sentences where I just thought “I have no idea what he’s trying to say here.” Also, typos can change the meaning of sentences. At one point it says “was the rheumatologist at the hospital” rather than “saw the rheumatologist at the hospital” which, while you can say that the DWP knew what he meant, still completely changes the meaning of what’s being said!
The assessment report says that the nice man who conducted my assessment was a physiotherapist. About four pages later it then has a space where he describes what he takes my mental health to be, based solely on his observations. As a physiotherapist. In this regard I feel lucky – I do not have complex mental health needs. However, I do not feel that my physiotherapist assessor was qualified to make mental health assessments of me purely by observation.
I was also observed to have “no abnormal movement in the upper limb” which made me wonder at which point I’d misplaced my other arm.
I’d also contest whether being able to calculate change fulfilled the requirement for “able to manage complex budgeting decisions”
The following quote really needs no further comment other that I found it rather offensive:
“…was of more than average build. Therefore she has no significant functional restriction in relation to taking nutrition.”
So, other than misplacing an arm, changing career and being called fat what was the outcome of this assessment?
Well they assessed me as being able to plan and follow a journey unaided, which anyone who has ever been in a car with me will tell you is really not the case. I was also assessed as being able to walk more than 200 metres, which was proved by the fact I “parked in the multi-storey car a park for which walked from with 2 elbow crutches to the centre (110 metres)“
(random sentence structure left in for your own amusement)
It also repeatedly states there is no restriction of movement in my upper limbs, which seeing as I have fibromyalgia and not arthritis, is unsurprising. Fibromyalgia is a pain condition. I can still move my arms around.
This document is ridiculous and laughable. A professional company that puts out assessments on people that will have a profound effect in their lives should not look like the document I was sent today, riddled with spelling and grammar errors, awfully written and completed in a hurry. I went into huge amounts of detail on my application form. The amounts of blank page on this assessment made me feel like this was not an accurate representation.
And it’s not the fault of the assessors. ATOS telling medical professionals to assess patients for things they’re not qualified to assess for. They send out assessment reports that look unprofessional and it just shows that they have no respect for the people they are assessing. They just want them through the door as fast as possible.
Hey all. Sorry for the rather extended hiatus.
It’s been a while, and a few things have happened. Firstly, the important thing: I got a letter last month to say I had been awarded Personal Independence Payments. I’ll be honest, I was stunned I was awarded it first time round. I was fully expecting to have to appeal but I was lucky. I was able to fill out the form “properly” and knew how to make sure I answered the questions in my assessment so they fully understood my condition. I found it a stressful and difficult (and very, very long) process. I cannot imagine how someone with mental health difficulties, who isn’t good at forms or has no-one to help them would ever manage to get through this process. The assembly line of assessing people’s complex lives through a series of tick boxes.
But. For now this fight is over. But there are still other fights to fight.
My next battle is going to be with the NHS.
Also the council. Them too.
I’ve been ill for almost a year. In that time I’ve been referred to a rheumatologist who I was under for all of twenty minutes who told me I had fibromyalgia, which was the same thing as chronic fatigue syndrome. I then fought with my GP for months to be put on the right medication treatment. I’m now waiting for my pain clinic appointment – still two months away – and trying to work out how on earth I’m going to get a referral to the M.E./CFS clinic I so want to be seen by. I already know that my GP isn’t comfortable dealing with cases who are “under” specialists but technically, I’m under no-one.
My husband and I had a crisis point a while ago. I called Adult Services, to try and get some help. But we weren’t eligible for any.
A couple of weeks ago I was alone in the house and I got stuck on the kitchen floor while feeding the cats at 5am.
But I’m under no medical professional and adult care cannot provide anything for me. I’ve been feeling worse over the last few weeks. Leaving the house is becoming a rare luxury. So why is it that there is nothing to help me?
Disability campaigner Sue Marsh wrote a piece about her current stay in hospital. It’s well worth a read. She talks about how nurses are rushed off their feet, and don’t have the time to complete basic tasks with patients such as making sure they are properly fed. If this is the state of someone who is ill in hospital, no wonder that services for people with chronic illness are in such short supply.
The NHS is disappearing. My husband and I and millions of people like us rely on the NHS to keep us walking, functioning and living. I’m terrified about what’s going to happen to the NHS if the Tories get into power for another five years.
Actually, I already know what’s going to happen. It will be dismantled and sold. And then, I really won’t have any chance of getting help.
The building I went for my PIP assessment in is probably the most inaccessible building I’ve ever been in during my 32 long years on this earth. ATOS in this area will do home assessments for people with mobility issues, which is good as the entrance has three heavy doors you have to be buzzed through, the tiniest waiting room of all time and the tiniest assessment rooms.
PIP assessors are a medical professional of some sort – OT, physio etc. which means the chap I saw should at least know a bit about what’s going on. He was really nice, which was good, but I felt like the assessment wasn’t thorough, and just went through everything I’d already written about in detail on my form. He asked about what conditions I had, the medications and their side effects. He was supposed to ask about a “typical day” but in fact he only covered eating and drinking and didn’t ask any more. The quote of the day was: “I need to write down an explanation of what this condition is because the person reading it won’t know about it”. Confidence boost right there!
Then there was a “physical” which was composed of your usual basic physical tests – touch your toes, squeeze my fingers, push against my hands and so on. If I’d have applied with a mental health condition I’d be quite confused by this point.
I did take someone along with me – my mum – who took notes (she didn’t ask if she could but she wasn’t stopped). The ideal person for me to take should’ve been my husband but a) see above re. wheelchair accessibility and b) it would be a foolish idea for me to walk into my PIP assessment with someone who is more disabled than I am.
It was exhausting. Towards the end I just couldn’t get all my words out. I missed so much. I feel like the right questions weren’t asked. I feel like I wasn’t enabled by the assessor to make sure I explained everything.
It felt like an exam. It felt like I should revise, make sure I can remember everything, make sure I answer the questions with the right answers. I felt like I was being tested, and I would come out with a pass or fail. Because the system is set up to make us fail. It’s set up so that we feel like we’re having to say and do the “right” things to be able to pass the PIP exam. We have to prove our disabilities, our illnesses. And rather than a system designed to make sure people receive the support and help they need, rather then a system that will hold your hand and guide you through with your best interests at heart, it is designed to put you on trial. To say “prove it”. And even when you do, it doesn’t always believe you.
I’m currently working on the assumption that I’m going to have to appeal. I figure that way, if I am successful first time it’ll be a nice surprise, but I’m being realistic. But this phase is done. Now I wait for the brown envelope with the PIP exam results in.