Our one year PIPaversary came and went shortly before Christmas, in a blur of end of term tiredness. One whole year since we opened our claim for government payments to help meet the added costs of disability. For those unfamiliar, PIP stands for Personal Independence Payments and is there to help with the added cost of disability. It is awarded based on the way that your disability impacts your daily life in two ways: the daily living component covering washing, dressing, eating etc, and the mobility component covering getting out and about. Both components have two levels, ‘basic’ and ‘enhanced’ to represent different levels of impact disability has on daily living.
11 months since we had 28 days to fill in a long document detailing how Al’s disability affects his daily life. I spent hours seeking guidance online for how to do the form. Al was very ill and really struggled to do it. He also found it incredibly stressful.
In May we went to our assessment. More stress. In the waiting room outside, the woman before us was leaving in an ambulance after collapsing during the assessment. The assessment itself seemed ok but it was hard to tell. We had no idea what was coming.
Then we got the report.
I still get angry when I think about the report and how little resemblance it bears to the assessment and our submission.
Reports difficulties, but
This is a phrase which makes me rage. It was repeated half a dozen time in the final PIP assessment report. It was used to essentially call us liars or to minimise Al’s experiences. The author of the report was a physiotherapist with no training in the complexities of ME, yet here they were telling us Al could do things we both knew he couldn’t. It’s angering and bewildering being gaslit by the government.
The report said Al did not ‘look tired’ was ‘well-kempt’ and able to be articulate about his disability. Baked into the report were assumptions about how disabled people ought to look or behave. Al was punished for not performing the DWP version of disability. He was awarded basic rate PIP and we set out to challenge this decision.
The appeals process has two phases: mandatory reconsideration and tribunal. In each, the claimant has a tight time frame to respond to an incredibly technocratic and bureaucratic system. Well, tight for us as we battled his deteriorating condition and my full time job. The government routinely missed their deadlines with no consequences.
Our request for reconsideration was refused. I prepared our tribunal case, which helpfully needed to be completed during the first two weeks of teaching this year. I listed in detail each assumption, inaccuracy and omission. I lost sleep as I tried to figure out how to articulate Al’s condition impacts him in a way that they would understand, and be unable to contradict or ignore. It was unbelievably stressful. I felt overwhelmed. I spent five hours typing up our case one Saturday.
I have a PhD which is technically in social policy. This is not a system designed to be user-friendly. I cannot imagine how people not used to this level of red tape cope. I am staggered that this is thought to be a system fit for purpose. Thank goodness for welfare rights organisations and the Citizens Advice Bureau!
And I had the thought of the tribunal ahead of me.
In the one year since our first call to the DWP we were now at the point of taking them to tribunal. I submitted our case and had our evidence ready to go. Their deadline to respond came and went. Then out of the blue we get a text saying the appeal is over and the DWP have capitulated to our appeal case in full. No tribunal hearing. One less thing to stress about. But what a fight it was.
We get to go through this all over again in 2 years as we have to redo the whole process. We get to do another benefits claim in the meantime as Al has given up work recently and we move from sick pay to ESA. I’m dreading it. It’s a combative, hostile system, with assumptions and misunderstanding about disability embedded into the heart of it. How can a one hour assessment by someone with no expertise on ME possibly deliver an accurate picture of a complex and variable set of interacting symptoms and their impacts?
This is an area where my academic interests and personal experiences collide and I’m still working through it. As you might be able to tell, there are some strong emotions present alongside a more academic understanding of the flaws in the system. If you want to read further than my blog, the Frances Ryan’s book Crippled is a good place to start.
As for me, it’s a new year and time for a new encounter with the DWP. Let’s hope it doesn’t take a year this time.