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.
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.
Last week it was my 5 month PIP-iversary. Hurrah! That meant it was time to contact the Department for Work and Pensions. Boo.
For various reasons including an epic 2-day fibromyalgia flare and general “not wanting to speak to the Department for Work and Pensions”, I put off making the phone call until this morning. But, seeing as I’d already waited on the phone for half an hour to get a GP appointment and was already in a pretty foul mood, I figured in for a penny, in for a pound and rang the DWP.
I was on the phone for, at a generous guess, 45 seconds. That was how long it took for me to tell the automated phone system that I wanted to find out how my PIP application was doing, and for it to tell me that they didn’t want people to contact them about their applications until 26 weeks from application.
My application is dated at the beginning of January. Which puts me somewhere in the middle of week 23. I have to wait until the middle of July before they’ll even talk to me about it. And that’s FINE, apparently.
But, forget about me. I’m fine, apart from a few flares and some pain I’ll be alright. I’ve got family and friends who are helping me. But, what about people who can’t look after themselves? People use their (currently) DLA to get access to adapted cars, wheelchairs, specialist equipment, carers…imagine being told that you’ll have to wait for over half a year before they will even consider that they might be taking a long time about helping you. People are literally dying before the DWP gets round to them.
And that’s assuming that, after your 26 week wait, they’ll tell you you’re getting some money off them. According to Benefits And Work, after the first nine months of PIP being rolled out, only 15.4% of the 220,300 applications had been processed, and of THOSE only 37% were awarded anything:
“To put this in perspective, this means that only 12,654 people, out of the 220,300 who have made a new claim for PIP in the 9 months since the beginning of April 2013, have been awarded PIP.”
That is 5.75%. The likelihood of you receiving PIP on your first application is just over 1 in 20. That’s not good.
But, I don’t need to be worrying about that yet. Because I’m not allowed to talk to them about it for another month. Because taking 6 months to process a benefit claim is just fine. Apparently.
As you read this I will be somewhere between Cornwall and Bristol I imagine, but I did want this to go out today as it’s my 5 month PIP-iversary today. Hurrah!
Well, now, let’s be fair. It’s five months since my claim was opened. It’s only FOUR months since I sent it back to the DWP so they could throw it at ATOS to wait in a large pile for months. Because I wouldn’t want the DWP to look like they were taking an excessively long time about it or anything.
In those four months:
- I have received a diagnosis of fibromyalgia
- I have gone onto and off medications.
- I have gained symptoms that are completely different from the ones that I put on the form
- I have stopped being able to do things that I could do when I filled in the form
- I can’t walk as well as I could
- I can’t drive as well as I could
- I’ve got a better idea of my “base line” and what my “flare” times are like, and it’s a lot worse than I thought
So, long story short, what’s on that form bares a passing resemblance to me in January 2014. It really doesn’t bear any resemblance to me in June 2014. Unsurprisingly.
But when I finally do get the letter that says they want to poke at me and see if I am what I say I am, they’re going to base their assessments on what I said in January. And then when I get a letter saying I’m not eligible for PIP (I am both realistic in my thinking and looking to the worst outcome as to not disappoint myself) I will have to appeal with my new situation, my new medications, my new symptoms. So they can take another 6 months to look at it. By which point it will more than likely have changed again.
Do you ever get the feeling you’re chasing your tail? That you’re running round in circles?
At some point this week I will call the DWP, again, and see if my form has seen any daylight since February. And then I’ll wait another month.
My PIP application and OT referral were submitted in February. I don’t expect to hear anything soon.
Various doctors (and a practice nurse) at my GP surgery have told me to increase, then decrease, then increase my medication. I am in constant pain but won’t be given stronger painkillers. I am in constant pain but am not allowed a referral to the pain clinic until I’ve been on my current medication (amatriplyline, 50mg) for a month, and then I have to try another medication (gabapentin), and then I might be allowed a referral. I am currently not under the care of any specialists.
I’ve realised I cannot do the work I so desperately want to do because I will not be able to manage it. I cannot get out of the house because I can’t drive very frequently any more, and leaving the house exhausts me. I am not eligible for social care.
So I can’t work, I’m in constant pain and I’m refused better pain medication or access to specialist care.
Exactly what the hell am I supposed to do now?