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.
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.
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.
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.
I cannot fill this form out.
I mean, literally. I cannot fill this form out.
I spent a large part of Friday beginning to work on it. The technique I used was to write all my answers on paper so I could look through them, change them and then get them checked by someone ready to put on the form. It feels like I’m writing a thesis paper – do drafts, get it checked, write it up ready for submission.
Since Friday I’ve got as far as question 6. I’m exhausted. The act of completing this application is in fact making me sicker. I’d been completing it by doing a question, taking a break, doing a question, taking a break. I phoned a local disability charity last week, who called me back yesterday and said I could go to a drop-in tomorrow to get someone to look over the form with me. This means that I really need to have the questions filled out “in draft” by tomorrow morning. I have nine more questions to do.
I am someone who knows a fair bit about benefits, who has a husband who’s already completed a DLA form and who knows where to go for help and assistance if I need it. I can drive myself (subject to pain levels and “how zonked on painkillers are we today?”), I can go to places to get help and I’m capable of going and seeking that help and yet this form is exhausting me. What if I was someone who didn’t have that help, who lived on their own or who had mental health problems that prevented them from going to an outside agency? THIS is why people aren’t claiming Disability benefits when they’re entitled to them.
The Catch 22 of disability benefits is that if you’re disabled enough to need them, you’re too disabled to apply.
Hello, happy 2014 and so on…
This post is a bit of an update to a change in my life, and a blog that’s going to come out of it.
You may remember this post from May last year, where I talked about our flat becoming flooded. Well, that turned into having to live in temporary accommodation for four and a half months. We moved back into our flat in the middle of September last year. At the end of October, I stopped working due to illness. At the beginning of December, my GP provisionally diagnosed me with fibromyalgia.
At the moment I’m not sure what’s going to happen re. work and so on. I’m trying to work out what my new “normal” is, and how and if work can fit around that. I currently suffer from chronic pain and chronic fatigue. Apart from quick trips to the supermarket at the end of the road, I’m only managing to leave the house on average once a week. This is a very new way of having to live my life and it’s taking me some time to get my head around it.
Today, my application form for Personal Independence Payments arrived. Personal Independence Payment, (or PIP) is the new version of Disability Living Allowance that anyone who is making a new claim has to apply for. It’s a 40-page document that asks you to describe the minutiae of every day, and how your condition makes things worse for you.
I was a professional, working towards my Masters Degree in my chosen subject, self-employed and working. I’m now barely able to leave my house. I want to document my journey through transitioning from working professional to chronically ill person. I am the person whose life turned around in a small amount of time because they got ill and had to work out if they were still going to be able to work.
I have until the February 9th to finish my PIP form. My appointment with the rheumatologist isn’t until February 26th, but I figure it’s better to get things started now.
Onwards and upwards…