Personal Independence Payment Update

You may remember that back in October I wrote about how difficult I found the few days following my physical assessment as part of the application process for the Personal Independence Payment (PIP) benefit. The ladies who assessed me were very kind and the time I spent with them wasn’t the aggressive inquisition I was expecting. What blindsided me afterward was the impact having to discuss how very restricted I am on my worst days would have. When you’re doing your best to look on the bright side of your difficulties, having to do the opposite so a stranger understands your daily life has a detrimental effect. Thankfully, I managed to pull myself out of that glass-half-empty state after a few days.

I had always intended on writing an update on my application when it ended, but I have to admit that I didn’t expect it to be a nine-month process. I’m pleased to say that this past weekend I found out that my application had finally been approved, but not without several stressful hiccups along the way.

Government benefits for the unwell and disabled are as confusing as they are controversial but, just as the name suggests, PIP is paid to disabled people to help them cover additional costs brought on by their illness. It helps to bring their level of independence back up to a more normal place. In my case, it might pay for taxis so that I can do more without thinking so much about the cost or waiting for someone to accompany me. I paid myself for my walking stick, my memory foam mattress topper (it helps me stay still at night), my large screen computer monitor etc. This money would help pay for those things. While my struggling health was a big factor in me leaving my last job, working freelance and therefore putting myself in a less secure financial position, this benefit isn’t about how much or how little your illness allows you to work. That’s the Employment and Support Allowance (ESA). I have not applied for this benefit.

To return to the PIP process, during my physical assessment I was told that I should officially submit the additional documents I took along with me to support my case. I did this immediately. I didn’t hear from the Department for Work and Pensions (DWP) for another two months. In mid-December I was informed that my application was being declined and that someone would call me before the end of the year to discuss how they reached their decision. At this stage I would get the chance to ask for the application to be reconsidered.

It’s strange, I’d steeled myself for a no and yet when it came I was heartbroken. Of course the money was important, but when you’re struggling to live as normal a life as possible and you feel that you haven’t been able to make them believe how bad things can be on those worst days, you start questioning yourself. The letter basically said that they acknowledge that I am disabled, but not that I’m disabled enough to receive their support. Disability can make you feel less of a person and a bit of a shadow. It can sometimes feel like you’re not a whole person and that everyone else is racing ahead of you. And yet, here was the Government telling me that I wasn’t enough of a disabled person either. It does bizarre things to your self-image and sense of identity.

Tired as I had become with the whole process, I knew I had to continue and appeal. I don’t really do ‘giving up’. I didn’t trust that the phone call would actually happen, so I called the DWP the following week and told them that I wanted my case reopened. If you make this request within a certain number of weeks and the decision is changed, your payments are backdated to when you started the application. For me, that was last August. The phone call came and I repeated this request. I was told that if I wanted a different outcome I’d need more evidence, ideally a GP’s report. I didn’t really see how my GP repeating information they already had would make a difference, and on finding out that the report would cost £40 I wondered whether I should go ahead or not. Of course, I did. With Christmas holidays and needing to meet with my GP beforehand, it took about a month to secure the report. It was, however, worth the extra work and money. He explained in no uncertain terms how difficult, impactful and, most importantly, how unpredictable vestibular hypersensitivity can be, not just from one day to the next but from one minute to the next.

On receiving my extra evidence I called the DWP to double-check that I had the correct address. During this conversation I discovered that the additional paperwork I had sent them in October hadn’t been applied to my case until after the original decision had been made. There was no explanation as to why it had taken two months for this evidence to be added to my file. I was furious and wondered if the same would happen with my GP report. I had to take a chance.

Last weekend, so some two and a half months after submitting the report, the new assessor reversed the decision, with my payments backdated to August. Every four weeks I’ll be receiving a payment that helps me to live a more independent life. I went through a battery of different emotions on Saturday. First shock and surprise, then intense guilt. I’m not even sure what I felt guilty about. Maybe that I won my case, but so many other poorly people hadn’t. Why me and not them, maybe? Later that evening it suddenly hit me that nine months of fighting was over and that I had been successful. I burst into floods of ugly tears. When you keep getting knocked back and thrown down, you start expecting things to go badly. You stop trusting that the best will happen because experience tells you it’s unlikely. So when someone finally turns around saying that you deserve some help, it’s quite a shock. Now I just feel relieved and a little more supported. It’s a comfort.

While I’m appreciative that my application was approved second time around, this system really is dogged by errors, delays and flaws that cost time, money and support. The paperwork I submitted in August was originally rejected because nobody at the DWP marked it as arrived until three weeks after it had landed in their offices. This was two weeks after my deadline for returning it. I had to make a special request for the case to be reopened, even though the fault was theirs. As previously mentioned, the same happened with my first batch of additional evidence. The amount of time lost to these kinds of errors is ridiculous.

On top of this, the system is set up to fail you. It’s there to prove that you don’t need help, rather than the reverse. It’s guilty, until proven innocent, not vice versa. I understand the need to weed out those trying to trick the system into paying them money they don’t deserve, but the way the questions and assessments are targeted means that the lack of consideration for unpredictability in illness is failing many people. The first assessor decided that because I can walk to my local shops a few times a week (three or four streets at the most), I had sufficient independence. On reading the GP’s report, the second focussed on the days where I struggle to stay upright walking around my house. The first didn’t take notice of the fact that I hold on to the windowsill in the shower. The second took the fact that I needed to hold on at all as a disadvantage. It’s scary that such differences in human interpretation of facts is all that lies between being supported or not.

My understanding is that my back payment has already been processed and that support will continue into winter of 2015, with a check-in later this year to see if anything has changed. This has been a long few months of fighting, but I’m glad I carried on when I felt defeated by the system.

If anyone in a similar position is reading this and wants more details or advice, please feel free to email or tweet me. I’m very happy to help. If you want to know more about what I experienced during and after the medical examination, click here.

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