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.
It was the queen’s speech today, as it turns out. This happened.
“…the government intends to introduce a legislative bill to place the NCS [National Citizen Service] “on a permanent statutory footing”.”
So. To be honest, I am not terribly surprised. Youth work has been moving slowly in this direction for a long time, putting “stuff” over practice, and numbers over longevity. Just as it is with the employment statistics, it’s not about the quality it’s about the figures. It doesn’t matter if your job is a zero hours job you don’t want, what matters is you got one and you can be added to the employment figures (up by a whole 2,000 people by the way, someone find the party streamers…). And so it is with the National Citizen Service, who boasts with having worked with over 200,000 young people in the few years it’s been running.
Cameron wants this for his legacy. But what about the legacy of the young people? In five years time, will someone who has been on an NCS course be able to say their life has been changed for the better because of it? If we talk to all these 200,000 young people in 2026, how many will be able to say their lives have been improved and made better through being involved? I’ll wager it won’t be many.
We all know this isn’t youth work. It’s prescriptive and it pays absolutely no attention to the needs of the young people it’s working with. For some young people it’ll be a fun summer and a step up on their way into uni. But what about all the other ones who fall off the end once their involvement with NCS finishes? Every professional who works with young people knows young people like this and knows that NCS just will not work for them. It’s short-term work when what’s needed is long-term investment.
And where does this leave youth work? It leaves it unfunded and unappreciated. Money is being thrown towards the NCS, it’ll get more and more difficult to find funding for good, long term youth work projects. There is already a lack of investment in good youth work, now there’s a big shiny government-backed logo standing in the way of youth workers being able to do any kind of good effective practice.
We’re pumping £1.2 billion into something that no-one knows the long-term outcomes for. But then, what does the long-term matter when you’re going to be leaving your post as PM in 2020 anyway.
(also: see In Defence of Youth Work’s post on NCS here)
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.
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.