I was transferred to ESA from income support (should have been incapacity, but they complained about NI contributions).
I don't handle phonecalls well, because processing unfamiliar or excessive auditory sensory information overloads my brain and my language processing capability diminishes, inhibiting my ability to understand meaning, or convey it. The DWP and Jobcenter were told repeatedly not to phone me, but to phone my mother instead, as she was my designated advocate/carer, but they ignored those requests.
They sent the ESA50 form to fill in, and I started stressing out and getting depressed, putting it off for ages because I just couldn't handle thinking about anything related to it, and because a lot of the questions just don't make sense. Eventaully my mother helped me fill it in, which ended up being a very long and stressful afternoon. The form included a letter from the asperger's specialist in my county, saying that it would be inappropriate for me to have to go through an ATOS medical/interview, because of how badly I would handle it (I believe people with asperger's are supposed to be exempted from these, according to the actual ATOS handbook).
I didn't have a medical, but was put into the Work Related Activity Group. That made no sense, because how can a person who is exempted from one interview, then be found fit to attend more?
We started the appeals process.
We recieved copies of the forms that the ATOS 'HCP' filled in in my absence, and sent on to the DWP decision maker. The form was filled in incorrectly, padded out with a whole load of irrelevant things, and outright contradicted what was said in the ESA50 and medical evidence.
I got my first appointment to see my Personal Advisor at the Jobcenter. They phoned me. My mother phoned them back to complain, to say that the ATOS decision was being appealed, ask them what information the DWP had passed on to them, and demand that they make 'reasonable acommodations' for the interview, as well as to ask what qualifications the Personal Advisor had, to deal with someone with an ASD. The Personal Advisor dismissed what my mother said, said they didn't need to know anything about my medical problems, and claimed that she had dealt with one person who had AS before.
With no sleep the night before, I was hyperventilating and shaking on the way to the appointment, had to do breathing exercises for a good 10 minutes outside before I was calm enough to go in, although I was still shaking and hyperventilating. They'd been told that I don't respond well to fluorescent lights or being surrounded by people, but I still had to sit in the waiting area in the middle of the open office for another 10 minutes, with half a dozen people talking on phones or with clients.
The only accommodation made was that the lights in the interview room were turned off. By this point I'm getting chest pains and sweating. The PA starts the interview like nothing is wrong with me, while I've shut down to the point I'm almost entirely mute, except for angrily spluttering out one or 2 words at a time. The PA goes on about how they're going to help me by having me come in for more interviews, and sending me off to groups sessions, acting like they'll somehow be able to fix something that the NHS and the county's psychology department haven't done anything about in 9 years since diagnosis, because they don't have anyone qualified to do anything besides prescribe anti-depressants, all of which I have reacted badly to, including those recommended by the professor who diagnosed me, as being more suited for people with AS.
My mum asks how anything the PA is proposing is going to help me, when it's obvious that even this interview is affecting me badly. The PA acts like a hyperventilating, shivering, sweating, stuttering person is perfectly normal, and starts talking down to me about how I need to push myself and try to interact with people more. I've already tried that, I pushed myself into social situations and failed thanks to shutdowns and chronic anxiety, in the following depression I started self harming in an attempt to suppress the suicidal thoughts, going as far as holding my arm against a wall and punching it until I heard the bone crack, when cutting just wasn't working any more.
I'm now losing feeling in my hands and feet, and starting to get chest pains, but I'm finally angry enough to stutter out: "I d-d-don't nnnnneed tthisss, I nnnnneed proper help. M-m-medical help." PA caries on talking down to me. Mum says that these interviews are not going to be any kind of help to me, PA carries on saying that I have to attend them because ATOS said I was fit to do this. Mum says ATOS accepted that I wasn't fit to attend their interview, and that we're appealing their decision because it makes no sense for them to do that, and then send me to other interviews. PA carries on with 'you have to attend these'.
By now I can't feel my arms or legs at all, the chest pains have me hunched over, and I'm alternating between short fast breaths and sucking down deep breaths. Mum says that the interview is over, and that we're leaving. The PA starts talking about sanctions for not completing the interview. By now I'm in such a state I think I'm having a heart attack or a stroke. I've never been anxious beyond hyperventilating before, so I have no idea what's happening to me. I splutter out "Call the f-f-f****** p-p-police" (I' mean ambulance, but couldn't even remember the word).
I'm having difficulty standing, not being able to feel my legs, so mum asks the PA to help me to the door. She refuses. Mum tries to help me up, but I fall flat on my face onto the floor, banging my head (enough to bruise it), and I'm unable to get up at all. Now I'm dribbling into the carpet and completely incoherent. Mum's panicing and asking for someone to phone for an ambulance, the PA is like "You have to move him, I have another client". Eventually someone from in the main office calls the paramedics, who thankfully show up very quickly.
I start to calm down with them there, but I'm still unable to move, talk, or get my breathing and heart rate down. They leave it up to mum to keep trying to calm me down, but remain there for the ~15 minutes it take for her to get me to the point she can hold my arm across her shoulders and walk me out of the Jobcenter. It's really lucky that her flat is right next to the JC, but I still have to sit in her car for a few minutes before I can walk the ~200 yards to her flat, where I collapse on the sofa, exhausted, but now getting a massive high from all the adrenaline my body produced. Now I'm all jittery and still stuttering, as well as utterly exhausted. Mum gets me hot sweet tea, and keeps talking to me until she's happy for me to go back home.
The whole experience was so traumatising that I don't go out of my front door for a couple of weeks, and I'm running out of food. Mum does shopping for me and makes appointments for me to go and see a friend of hers from work who does counselling (she's a reflexologist and aromatherapist). I'm lucky that health center is on the edge of town so I can get to it without going through town. After the second session I can finally spend long enough in the supermarket (also thankfully on the edge of town), when it's early in the morning and very quiet, to get one basket. After 6 weeks of therapy (interrupted because of my sleep problems) I can handle going to the supermarket long enough to fill one of the small trolleys, again provided it's very early or very late, and the place is almost empty. I'm still not leaving my flat for any other reasons.
Months pass with neither the jobcenter or DWP sending me anything, or phoning either me or my mother, and I'm starting to get worried about what is happening. We start preparing for the appeal, and make an appointment to see the asperger's specialist.
He's pretty appalled at what I had to go through at the jobcenter, and their complete lack of communication since then, and agrees to write a letter to send off with the appeal, when the paperwork for it arrives.
The letter is OK, but has a couple of mistakes about the order in which interractions with the jobcenter DWP happened, so I start writing a letter back, trying to go into as much detail as possible. Again having to think about this is stressing me out, making me depressed, and taking a long time to do.
I get a letter from the DWP saying that they have reconsidered the information given to them in the ESA50 form and the accompanying medical evidence, and decided to put me in the support group.
All it would have taken to avoid one of the most traumatic experiences of my life, would be for one person to do their job, and read the f*****g forms we'd sent them in the first place.
ATOS, The DWP and Jobcenter are uncaring, unqualified and thoroughly incompetent. What they did more likely than not broke the law, but of course that doesn't mean a thing when I can't afford legal representation.
If you are going to appeal or challenge any decision ATOS/the DWP makes against the advice of your own doctor or specialist, this may come in handy:
IMPORTANT: How to Gain Exemption from DWP/Atos ‘Fit for Work’ & WRAG decisions by Applying ESA Regulations 29 and 35 NEW CAMPAIGN BY BLACK TRIANGLE & DPAC
IMPORTANT! BLACK TRIANGLE & DPAC REGS 29&35 CAMPAIGN: FAILED YOUR DWP/ATOS WCA & INTEND TO APPEAL? DOWNLOAD THESE DOCUMENTS FOR YOUR GP!
Essentially, if in the opinion of your own doctor or specialist your being placed into the WRAG or Work Program would negatively affect your health, then regardless of any of the questions asked on the ESA50 or in the interview with the ATOS HCP, you should not be put into the WRAG or Work Program.
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You aren't thinking or really existing unless you're willing to risk even your own sanity in the judgment of your existence.
19 Apr 2013, 3:35 pm
