How do you tell the job centre that the issue with finding work isn’t the “finding” part, but the “work” part? Finding a job isn’t the issue. There are jobs out there in my sector – not as many as there were but there are some. Believe me, in fleeting moments I have looked at different job roles and thought “if I wasn’t ill I’d be so good at that job”. I could have a job, a managerial post, with a salary. If I did that I’d be able to rent a flat privately, I wouldn’t be sitting on the council waiting list because the Local Housing Allowance won’t cover a private rented flat and I’m pretty sure life would be a lot sunnier.
Funnily enough, I’m not in this non-working position because I don’t want to work. Far from it. I’m here because I’m ill.
I’m here because I get about two hours functional working brain time a day, on a good day. I’m here because I currently can’t cook a meal, can’t clean my own flat (vacuuming and washing up both involving a level of standing and arm-usage I’m really not able to achieve right now), am fatigued to a level where I sometimes have to have meal replacement shakes for dinner and a bus ride to the local job centre and back leaves me in bed for the rest of the day. And sometimes the next one. I don’t do this because it’s an easier life. An easier life would be working a good full-time job and being able to take care of myself.
Yesterday I discovered I hadn’t been successful in my claim for ESA. Out of a required fifteen points, I had scored a measly six. For mobility. The pain, the fatigue, the general crapness of my ability to function wasn’t so crap that I would be deemed unable to work. I’m going for a mandatory reconsideration of course – especially as the decision maker on the phone told me “you put that your condition is variable, which means sometimes it doesn’t affect you” and we all know that’s not what variable means, for me variable means “sometimes I can put on clothes and leave the house!” – but in the meantime I’ve been transferred over to JSA and I have to attend a “work-focused interview” on Monday morning at the Job Centre.
Y’know, the one that puts me in bed for a day, that one.
I’m already exhausted.
And just when I was all excited that I would have to fill in any more forms.
After just under a year of trying, failing, trying again and finally succeeding to get PIP, welcome to the sequel: ESA. Yup. My circumstances have changed, and now I have to make my own ESA claim. It’s like deja vu all over again. I’ve been sent a “Capability for work questionnaire” with the famous “Can you pick up a £1 coin” question, I have my sick note from the doctor and I’ll have not only a “Capability for work assessment” but also a “compliance interview” (because I’m going from being on someone else’s ESA claim to going onto one of my own and apparently I have to Do That The Right Way).
Are you ready for months of fun exciting blog entries about my third trip through the wilderness with the Department for Work and Pensions? I know I am!*
*At this point I’d like to personally thank the Department for Work and Pensions for giving me months, nay YEARS of material to blog about. I couldn’t have done it without you.
Ok my text wasn’t quite worded like that but the sentiment was the same. Yup, I got PIP. After not having it since August, after two applications two medical assessments and a tribunal, I finally got my disability benefits back. My Personal Independence Payments can start doing what they’re supposed to be doing – giving me personal independence.
We are very relieved. And I am very relieved I can stop thinking about it for a year (I don’t know how long or what level it’s been awarded at yet) because I am now so very, very bored of talking about it.
It didn’t quite break me but it got pretty close. Look back at my PIP tag for the whole gory story but it’s not an unusual one, or even a particularly bad one in terms of the fight to get PIP. Even with the BS I’ve had to go through over the last 10 months, I’m still one of the lucky ones. My story is just another one of the thousands like it. Getting disability benefits is a fight, it shouldn’t be but it is. At least I get a ceasefire for a year.
I am awaiting an envelope, and that envelope will tell me when my ATOS assessment for my third PIP application will be. Third application, third assessment. I should be a pro at these by now.
When I had my appeal hearing back at the beginning of March, they asked me about my graduation. Not being at uni, or work, the actual ceremony. Did I go there myself? Were my family there? Why? Did I have to walk up steps? Did I use my sticks to walk across the stage? Did I talk to anyone? How did I get home?
Not gonna lie, about five minutes of questioning was based on around thirty seconds of my life.
My graduation was a very special day. It was not a “usual” day, and on that day I did not do my “usual” activities. I wanted to look nice, I wanted to enjoy myself, I didn’t want to walk across the stage with my sticks and I wanted to talk to people. Because I was so determined not to miss it, I accounted for days before and after it in order to save energy and then have time to recover afterwards.
I don’t want my full-time job to be “ill person”. Dealing with it is a full-time activity and it’s not going to disappear but I don’t need to have that as my primary identity: “Emsy, The Ill Person”. But anything I do that puts my illness into the number two spot (anything that requires me having to act like a regular human being and do things like “get dressed” or “leave the house”) is questioned by ATOS as a signifier that I’m not actually ill. If I don’t walk around (well, maybe not walk because, ATOS…) with a placard saying “GUYS I’M ILL” then I’m not ill. Or, I’m not ill *enough*.
I want to deal with my illness in my own way, in the way that is the best way for me and my (physical and mental) health. But if I do, I won’t be believed. At what point am I going to have to sacrifice money I need in order to have a sense of self-worth I also need? Because apparently, I can’t have both.
So, my PIP appeal was not successful. The panel didn’t award me enough points under the descriptors for me to qualify. So no PIP for me. I can reapply, and I will, but the back-payment of PIP between last September and now – which I would’ve had if my appeal had been successful – is gone.
I was going to write about the tribunal experience, about going into a courtroom and being questioned and about how this isn’t an exercise in helping someone, this is a tribunal hearing where you are expected to explain yourself. About how you have to give evidence in the “right” way, and not annoy the judge which suggests that they may be basing their decision on their opinion of you, rather than on your medical evidence.It shouldn’t matter how much I piss the judge off if the medical evidence stacks up in my favour. But thousands of people have done this before and this is not something out of the ordinary. For many sick and disabled people, this is ordinary. Going to court to try and get the basic level of help to live your life is now “ordinary”. Unremarkable. Expected. Acceptable.
Personal Independence Payment is supposed to provide you with exactly what it says – independence. For the year I had PIP I used it for yoga classes, bus travel, car parking, heat pads and support pillows and a whole load of other stuff. Having this stuff meant I could look after bits of my health – travelling, sleeping well, moving around to a level I could manage – that meant I was able to do other things I wanted to achieve, like finishing my MA. Unfortunately, the things my PIP allowed me to do turned out to be the very things that led to it then being taken away from me again. The argument “when I have PIP I’m independent so I need to continue having it in order to maintain that” wasn’t enough. Which leads me to believe this isn’t about “independence” at all.
As for me, I’m alright. On the day of the tribunal I was upset but I went through the five stages of grief pretty quickly and had got to acceptance by the next day. I’ll reapply, I have other things to do, this isn’t the be-all and end-all of everything. However it does mean you’ll now have to put up with me going through the PIP process *again*…but you can blame the tribunal service for that one!
My PIP tribunal is in a week and I am exhausted. I am now also very aware of the cost that goes into a tribunal, both monetary and health-wise. I am one person, with one PIP claim, and it’s taking an army of people. And an army of people come with an army of costs.
I received the “bundle”, that is all the documents the DWP hold about you as part of your PIP claim, back in January. My particular bundle consisted of 188 photocopied pages. Times that by two as a copy of all that is also sent to whoever’s representing you at tribunal, if anyone is. And then the DWP has to mail both of these reams of paper.
I am immensely lucky to have a local law centre that is very good at PIP tribunals. Everything I receive from them, I receive for free. An initial consultation, time for my representative to read through my bundle of papers, a longer interview, more time for him to write up witness statements and finally their time spent at my tribunal representing me. Legal time is expensive time, and someone somewhere has to foot the bill.
And the tribunal itself. A judge, and two representatives have to spend their time conducting my tribunal. The court has to be booked and paid for. Travel costs, more printing costs, any other of a myriad of administration tasks that have to be done. The filing of court papers. The sending out of the letters instructing when the tribunal will be. This is all expensive stuff. Someone has to pay for it.
And of course I’m hardly the only person in the country who has gone to tribunal for their PIP claim, very very far from it. According to Benefits and Work the number of PIP appeals in the first quarter was 14,751. This is costing the country a fortune.
But the other huge cost of a PIP tribunal is that it makes people who are already sick get sicker. I’m so, so tired of doing this and I know how to do this. I know how this system works and I know how to fill in forms and how to say everything the way it needs to be said. I have help and representation. And I’m tired. I can say categorically that the PIP appeal process is designed to be as difficult and as exhausting as possible, in order to make people who already struggle just give up completely. It’s designed to be a big, impassable mountain.
My tribunal’s next week. I’ll keep you posted.
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.