In July 2015, two months and one assessment after I began my claim, I received the decision letter from the DWP. I was nervous to open it, but it turned out to be good news. I was being awarded Standard Daily Living and Enhanced Mobility for 2 years, and I had a £900 back payment!
For 15 months, I was fine, until we received a review form in the post in September 2016. The form said it was to check I was still getting the award I needed, and so I needed to tell them whether things were better, worse or the same as when I started the claim. The form consisted of tick boxes next to each descriptor, and I had to tick either ‘Harder’, ‘Easier’ or ‘No Change’, giving a reason why things had changed if applicable. My mum helped me fill it in, as I struggle to handwrite things these days. We ticked ‘No Change’ for about half of the questions, and ‘Harder’ for the rest, citing my depression and increased anxiety and fatigue as the reasons why things were harder. Thinking we would be all right, we sent the form back.
By October, we received a letter from ATOS, inviting me to attend an assessment to check I was getting the correct rate of PIP. I didn’t want to go (these assessments make my anxiety so much worse), but we didn’t have any choice, as I know they cancel your PIP if you refuse to attend an assessment. So I mentally prepared to have my second ever ATOS assessment.
On 27th October 2016, I went for the dreaded assessment. Despite there being an assessment centre in my home town, we had to travel 40 miles to the next county for some reason. I went with my parents as I can’t drive; my dad drove and my mum did the directions. We nearly got lost a couple of times, but we got there with twenty minutes to spare.
When I saw the assessment centre, I was horrified. It was probably the least accessible building I had ever seen. It was an old Tudor building with steps up to the narrow front door, explaining why the letter said the entrance was at the back. Dad drove round the back to the tiny car park, and we thankfully managed to get a space. The car park was surfaced with gravel, and we couldn’t push my wheelchair over it. This meant I had to walk with my crutches until I got to the concrete pavement by the building, at which point I got into the chair and Mum pushed me.
The entrance proved to be the biggest challenge. The door was narrow and Mum had to undo the bolt so both halves of the door were open; even then it was a squeeze, and I nearly scraped my knuckles as I went through the doorway. The threshold was ridiculous, and we had to tip the wheelchair right back to get over it.
When we finally got inside the bloody place, we found the floor so uneven it might have made some people seasick to wheel across it. I have never seen such an uneven floor indoors; my dad, who is just as cynical as me, described it as ‘undulating’.
I got very stressed in the waiting room as the receptionist was playing tinny music on the radio, which hurt my ears. I had to put my headphones on; listening to ‘Moonlight Shadow’ on repeat blocked out the annoying noise, but didn’t do anything to calm me down. If it wasn’t already obvious, I was very anxious about the assessment – I felt sick all morning and hadn’t eaten all day – and this wasn’t helped by the assessment starting ten minutes late (despite there being no one being assessed before me).
Finally, the assessor came into the waiting room and called my name. She got me to get out of my wheelchair and walk roughly ten metres into the assessment room. I walked slowly and leaned heavily on my crutches, just like I always do. She didn’t see most of my walk, as she walked off and went into the room, leaving me struggling behind her. Mum took my wheelchair and went back to the waiting area.
When I finally got into the room, I sat down on one of the chairs and propped my crutches against the other one. I was out of breath and my wrists hurt. I took my chewable stim toy out of my pocket and put it in my mouth; I chewed on it for most of the assessment.
The assessor shook my hand (I hate handshakes, but I was scared of offending her, so I did it anyway) and sat down opposite me behind the desk and started to type on her computer. She told me she was a mental health nurse, and had a degree in CBT (I absolutely hate Cognitive Behavioural Therapy, so that didn’t reassure me). She asked me for my ID, and we had the following exchange:
Assessor: Can you show me your ID?
Me: [Confused] What?
Assessor: Can you show me your ID?
Assessor: [Louder] Your ID.
Me: Oh. [Feeling like an idiot, I take my bus pass and debit card out of my folder and pass them to her.]
I don’t know why that confused me so much, but it did. In the car on the way home, my mum said it might have been helpful had she told me she wanted my ‘identification’ or something else, rather than just saying ‘ID’ louder. I have to agree.
During the assessment, the assessor came across as very friendly and kind, and I started to let my guard down with her. She seemed sympathetic when I told her about my friends abandoning me, and was gobsmacked when she learned the Chronic Fatigue clinic keep refusing to see me, and that I don’t have a CFS care plan at all. I felt like she understood my situation, and that rarely happens when I meet medics.
She asked me about my hobbies. I told her I write fanfiction and enter writing magazine competitions, but I mainly watch TV. She asked what kind of TV, and I told her I like comedy box sets. She asked me what was my favourite, so I told her I love The Fast Show – and I made a little joke and said how it’s the perfect programme if you have a short attention span.
She asked if I was in school; I told her I quit sixth form in February, and explained that, because I wasn’t in education, the government had cut my Child Benefit and I now had to pay for my prescriptions. She asked me what I got in my GCSEs, and seemed impressed when I told her I got 1 A*, 4 As and 3 Bs. She also asked if I could drive (no, I can’t) and who I live with (my parents and my younger sister). She enquired about the house, and I told her the house is unadapted, and we can’t have a stair lift because we have the wrong type of stairs.
She got me to spell ‘world’ backwards (I managed to do it, but had to think really hard) and to do a really simple sum (£1.00 – 25p) and asked me about my medication (I knew their names and what they were for, but I couldn’t remember all of the doses).
Then we moved on to the musculoskeletal examination. I had to stumble over to the bed, and leaned against it to stop myself falling over. I was out of breath and my legs were already aching. She told me I could carry on holding on during the exam, as it wasn’t a test of my balance. She got me to tilt my head to the sides, to raise my arms and put them behind my back and to lift my legs and rotate my ankles. I could do all of these, but slowly, and my legs were trembling when I lifted them. I wasn’t able to crouch; all I could do was barely bend my knees before my thighs started to tremble, causing me pain. I couldn’t touch my toes either, although I have never been able to do that, and trying to really hurt my lower back.
When I was back in my seat, my lower back kept hurting, and all four of my limbs ached. She asked me if there was anything else I wanted to tell her about. I said about my sensory issues caused my undiagnosed yet bloody obvious autism (my psychologist described me as presenting ‘clear symptoms of an autism spectrum disorder’), but she dismissed this because I don’t have my diagnosis yet. This annoyed with me, but I was too anxious to say anything.
Then the assessment was over. She called my mum into the room and I got into my wheelchair. She said goodbye and we left the room and prepared for the ordeal of getting back out of the building.
The DWP’s Decision
We received a letter from the DWP on 9th November. This set off alarm bells, as we were told it would probably take six to eight weeks to get a response. When I opened the letter, my suspicions were confirmed.
The letter, dated 5th November, told me that I no longer qualified for PIP and they cut my benefit on the day the letter was dated. A few days later, my mum received a letter from the DWP telling her that, because my PIP had been cut, she had lost her Carer’s Allowance. Suffice it to say, we were extremely angry and upset.
The ‘Pack of Lies’ – AKA The Assessment Report
The day after the assessment, we had phoned the DWP to request a copy of the report the assessor had sent to the DWP. It arrived a couple of days after the DWP’s decision letter. It certainly explained why the DWP had cut me off, because it was full of lies (my Mum referred to it as a ‘pack of lies’).
The problems with her report include:
- She logged the wrong date as the start of my PIP claim. It was actually started in May 2015, but she had put it down as 27th April 2009 – otherwise known as my 10th birthday!
- She only logged one of the six consultants letters we submitted with my claim.
- Her ‘informal observations’ were wrong, and because they were observations, I was not given the chance at the time to correct her.
- She said I looked well kempt, but that was only because my mum checked I had clean clothes on and washed my hair the day before.
- She mentioned that I made ‘adequate’ eye contact, despite the fact I never once looked at her eyes and she spent the whole assessment looking at the computer screen.
- She said I didn’t look anxious, but I was fidgeting and felt dreadfully anxious.
- She apparently did the following mental state tests, which I definitely did not do:
- Serial Sevens (the test where you have to count backwards from 100 in sevens)
- Three commands (a test where you have to follow three consecutive commands)
- During my musculoskeletal examination, the following things apparently happened:
- She said I crouched to the floor and then stood up again – I barely bent my knees at all and my legs were wobbling.
- She also said I did exercises lying on the couch, which never happened, as I never even sat on the couch, let alone lay down.
- Best of all, she told me that I could hold onto the bed to steady myself as it wasn’t a ‘balance test’, and then wrote in the report about how I appeared to be balanced whilst doing the bloody exam!
- Apparently I can manage my money and remember to take my meds on time because I know the names and doses of my medication.
- I also must eat well enough because I’m overweight, despite the fact that if have a restricted diet and am only overweight because my old antidepressants made me put on 2 stone.
- She used the fact that I am not under a community mental health team to discount my issues with everything (such as motivating myself to eat or shower), despite the fact that I am under a CMHT, and several of my letters state this.
This part can be explained in a single sentence: the DWP agreed with the report and didn’t change my award. Because of course a mental health nurse can’t possibly be wrong and she must be telling the truth just because she’s one of their ‘health professionals’! (Sarcasm)
So, to sum up the entire experience, it was a disaster. I started a new claim in January, which should hopefully be more successful.