This was the text I woke up to on Friday from the DWP. Upon reading it I felt sick. I also felt patronised (as if I needed telling to fill in the form carefully!) and intimidated (fill in the form or else you won’t get the money that you need to meet the extra costs that come with your impairment.)
In a sense I am one of the lucky ones, in that I have not been asked to go through this process until now. It’s important to outline the psychological effect that PIP, and the prospect of this change, has had though. The problems with the PIP assessment process have been well documented and the worry about having to go through this process has been at the back of my mind for literally years.
Imagine waiting for a letter you have wanted to come through the post. Each day you await for the arrival of the mail that day with a sense of keen anticipation. You might even look out for the person delivering the post and feel a little surge of adrenaline when you hear their footsteps or the doorbell. Now imagine that this is a letter you have dreaded getting. Swap that excitement for fear. This is what waiting for that letter has felt like.
I got this letter on the Thursday before Easter. Or more to the point my wife did. She’s been keeping an eye out for the post for years too. She saw that the letter was from the DWP, guessed what it might be and opened it for me. She was then able to tell me, very gently that the letter had arrived.
After calming down slightly, I picked up the phone to begin my claim. I wanted to at least have started the ball rolling before Easter. I captured how I felt after the call in the following tweet:
I’ve always been told that first impressions matter. You set the tone, get it right, and it establishes trust and helps to build good foundations. I’d heard the horror stories with PIP. I’d read the critical reports and tweets and news stories. They’d have made sure everything was thought of and ran smoothly now, right?
I was left shaken and literally shaking after that first phone call. The failure to be able to even answer basic questions like ‘what comes first, form or assessment?’ (turns out it’s the form!) gave me no confidence at all.
At times the call also resembled a police interview under caution as I was warned that I had to be accurate and warned about fraud at least twice. The impact of this is that it ramps up the nerves. I felt like I was under suspicion and being watched.
I was also struck by the technical nature of the process, the questions involved and what was asked of me. So much so that I talked about the possibility of using an advocacy service to help me at one point. When you consider that I have a Cambridge degree and a PhD and am struggling, what hope does someone without that background have? The process is a fundamentally inaccessible one.
I’ve also had to make an appointment with my GP. Apparently one of the things that can happen is that a medical assessment can be filled in without you actually being consulted with. I should say at this point that my GP is great and has been supportive in the past. What my GP doesn’t have is 35 years worth of experience of Cerebral Palsy and an understanding of how this condition can impact on day to day life. We’ll hopefully get to fill out the medical paperwork he gets sent together.
So now I await the form. Thankfully, I’ve had lots of support from my friends and other disabled people who have been through the process. I’m really grateful for this as it has helped me to have a better understanding of the process and what will happen next.
Let’s see what the form brings…