Written for the benefit of those who have to be assessed by Atos and for my MH as I need to vent!
I’m on ESA due to my ME/CFS. People have been telling me for ages that I should apply for PIP as it’s money that I’m entitled to, to help me. Hearing all the horror stories about Atos and how people who are almost dead (wish I was exaggerating) being turned down, I saw no point in even trying. Then I met some people who had been successful and the extra money had helped them and their families enormously. It has also opened a door to other support.
Initially, I phoned up DWP on behalf of my son who has ASD. I ended up also applying for myself which felt a little strange, as if I was trying it on! The forms arrived and I was overwhelmed by the amount that needed to be filled in. Luckily, I was helped to fill in my son’s form by a CAB carer support scheme who regaled me with tales of Atos being inconsiderate and ridiculous (telling people who can’t cook to use a microwave – aside from the cost of ready meals, it’s not remotely practical for a family). None of this filled me with much hope.
The biggest tip I was given was to fill out the form as if it were your worst day i.e. the days when I can barely move, in pain, emotional…. After requesting an extension on the forms, I managed to get all the supporting paperwork together to send off the forms.
Maybe I was delusional but I had all the hope that neither of us would need an assessment and that the money would be freely given. I think, having heard all the horror stories, I should have realised that this was NEVER going to happen.
After a surprisingly short wait, two letters arrived. They wanted to me to be at Gloucester for 9am!! A minor meltdown ensued before getting my act together and phoning them. I garbled a whole heap of words at the man on the other end of the phone and he concluded that it was odd as they was a centre in my home town. Phew!
That encounter was positive and I really began to feel differently about it all. Anyway, judgement day arrived with a returning sense dread. A woman with a friendly voice had phoned the day before to make sure we were going to be there. I was taken aback by the niceness. Despite this, I woke up feeling sick and shaky.
The building wasn’t hard to find and was only a short walk from the bus stop. We were met with locked doors, a security guard came to let us in. Then another locked door….then a receptionist behind bullet resistant glass….sat in a huge empty room with just a leery looking security guard and a place to hang coats for company.
Immediately, I felt like I was seen to be a dangerous person, a low life to be feared. We sat down on some very uncomfortable chairs and waited. I clocked the cameras and the alarms on the ceiling. My son overheard the receptionist saying that she expected people to be more grateful that they were offering to pay for expenses. All was not well.
My son started to get agitated as we waited. 5 mins late, 10…15…20….23 All I wanted to do was to lie down and sleep but the chairs made that impossible. A woman came to the door and called my name, panic. I checked that my son was going to be ok and left the room.
The woman met me with a smile and I thought she was nice. She told me that she had been a district nurse before working with Atos and that she was well informed about health problems. Then the questions, which were exactly the same as the form I’d already filled in.
Her whole demeanour changed, it was like talking to a robot. My brain went dead and I struggled to tell her how my life was impacted. I had to talk about what illnesses I had, the meds I was on, how my day to day life was affected. None of the questions seemed to give me the chance to explain how I struggle.
She gave me three words to remember, then I had to answer some simple maths questions and show her that I can move my arms. It was almost like I was having an outer body experience, I didn’t feel in touch with what was going on at all. Aside from forgetting all of the symptoms, I found myself mumbling and looking anywhere but her face.
She asked me to repeat the three words, I could only remember two. One word being ’tissues’ which was easy to remember as there was a box in front of me which I had to make use of. I did my best not to cry as I thought it would be seen as manipulation. I couldn’t stop all the tears when she asked about my PTSD and how I cope with crowds.
And then it was over. I said thanks and that it wasn’t as bad as I was expecting it to be (IKR?!) and waited for my son. He seemed to think his went ok, he’d had the same maths to do and had to spell ‘world’ backwards. How any of this is useful with conditions like ME, ASD and mental health problems, I’ll never know! We both commented on how they asked lots about our asthma even though it wasn’t relevant to why we were there.
After letting ourselves out (forgot to mention, on the way to the assessment we had to pass through another locked door. May as well have been a prison) I went to the toilets and collapsed in tears. It literally felt like everything I had held in just exploded out of me. If my son hadn’t have been there, I’m not sure how long I would have cried for. I was overwhelmed with the sense that I had screwed up in defending myself again, like I did in court. Having to justify to this woman why I should have £20 a week for an illness that you cannot see. It was all too much.
Now all I can do is wait and see what they say. I’ve already looked into the appeal process as I’m convinced that it went as bad as it could have.
We shall see.
Love, hugs and blanket dens