This link has inspired me to get off my backside and write again.
What grinds my gears is people who judge what being on ESA (Employment Support Allowance) or being long term sick/disabled is like without any knowledge outside of the Sun and the Mail. This is going to be tl;dr for a lot of people but I want it to be known from someone who’s been there what it’s like first hand to go through this system.
I have hypermobility and lipodystrophy – a nasty combination of conditions which make getting around really difficult. I can’t stand for periods more than 10 mins at a time, can’t sit for periods of more than 30 mins at a time (on average, some chairs make it more painful sooner, others I can sit in for longer). I didn’t ask to have either of these conditions. I did nothing to cause myself to have these conditions. I’ve had to go to Addenbrookes for my lipodystrophy, have over 12 vials of blood taken and they don’t know why I have it. But I do and nothing can change that.
Contrary to what the media might tell you, some of us on ESA have worked before. I worked for 10 years in low paid retail jobs, starting when I was in high school. During my GCSEs I did 20 hours a weekend, during my AS Levels I was working 24 hours a weekend. When I had to ditch my A Levels because of shit at home going down, I went into full time employment and was working 40 hours a week. At one point I was working 52 hour weeks on average. Can you even begin to imagine what it feels like when you have ‘all benefit claimants are scroungers’ said to you? When you’ve had to stop working through no fault of your own and want to take out of the system that you’ve already paid into? I got myself into serious amounts of debt a couple of years back when my mental health became the worst it’s ever been and felt I didn’t deserve to claim benefits because there were other people out there worse off than me. I almost lost my flat in the progress – the one stable home I’ve been able to have in my life.
I’m one of the poor sods who has to go through an ESA medical and have had to for the last few years. The first one I was put in the WRAG (Work Related Activity Group) after a ‘healthcare professional’ from ATOS was forcing my joints to move in my medical. My so-called support from an advice service had filled out my DLA (Disability Living Allowance) form for me, omitted a load of information which I never saw as he asked me to sign the form first and I was told this form was used in conjunction with my medical to determine my ESA award. When I attended the Jobcentre, my advisor told me I shouldn’t be there, that my hospital appointments would make looking for work unviable and I should appeal to get into the Support group. I didn’t have the strength to endure a lengthy appeal so I put up with being on the lower rate as I didn’t want to risk losing my income altogether.
Next assessment came around just after my local assessment centre (which is on the first floor) said it would no longer take anyone with mobility issues who would not be able to leave the building in the event of a fire as quickly as an able bodied person. While I have sympathy for this woman in Croydon (used to work there 10 years ago so know the area well and with fond memories), she only had to go to Balham. I had to go 40+ miles out of the way to Ipswich with no public transport option available for me. Because out here in the back of beyond, everything’s dated and we have awful public transport. I don’t drive; I can’t afford to run a car and I’m still on that DLA award that my ‘advisor’ fucked up which will run out September next year. As it’s a low mobility award, I don’t qualify for a car from Motobility. Again, didn’t want to rock the boat by disputing my award or go through the stress (and it is stressful to deal with the DWP) to get more money. When I got told I had to go to Ipswich, I had no idea how I’d go about it. They told me that they’d organise a taxi there and back. My doctor and I tried to get a home visit arranged but they claimed she didn’t send off the paperwork in time. Said doctor was pissed off about this as she faxed it the same day they requested it. So even though I had tried to arrange a more suitable home visit, ATOS themselves were obstructing me in having my disabilities accommodated.
At Ipswich, I got to see an actual doctor this time. He said right away that I shouldn’t have been called in for a medical and that it should have been done at home. He seemed genuinely sympathetic to my problems, skipped the physical examination as my movement with a walking stick was incredibly laboured, and cut the questioning short when I was brought to tears discussing my mental health. Got put in the Support group and was left alone for 2 years while ATOS ran away from their contract.
December last year I got a letter through at the start of the month saying I’m due for a medical in January. See, waiting for the ESA50 form is one thing – you live with a constant dread in the back of your mind that it could pop through the door any day. Once you fill it in and send it off, you don’t know when they’re going to call you in or if they’ll simply award you based on the form. Spoiler: most people get called in regardless of whether they have degenerative, permanent or temporary conditions. So once you get the form off, you’re constantly worrying when the hammer’s going to fall. Christmas was less than cheery as a result as the spectre of my medical was in the background.
So the day of the medical I had severe diarrhoea. I was on a new medication which didn’t exactly get on with one of my existing meds. I was still prepared to go but I was concerned about literally shitting myself. The assessment centre calls up to do a ‘numbers check’ for who would be attending and they ask how I am. I’ve long since given up the pretence of saying ‘Oh you know, I’m alright’ to anyone so I tell the guy what’s going on with my backside. He tells me that I shouldn’t come in and that they’ll re-organise the date. I ask for his name in case my money gets stopped because that would be hardly fair if they’ve told me not to come in when I’m willing, despite my condition at the time. I kept getting my ESA but waited 6 months for a rescheduled appointment.
So we’re at my third assessment in 5 years; bear in mind I’m lucky I’ve had so few as some people have had yearly ones. People with worse health problems than myself. This time Maximus are the guys in charge. My appointment’s at 10:30am on a Monday morning. When I arrived 10 mins early, I was the only person in the waiting area. This is good for my anxiety, I’m not constantly worrying that someone’s going to clock my hirsutism (symptom of Polycystic Ovarian Syndrome) but I’m still on edge given my past experiences. My boyfriend’s being amazing at keeping me calm, but as the time drags on and more people come in, I start to get more agitated. I start to worry they’ve called me and I’ve not heard them. After all, it’s now 11am and I was the first person I saw in the waiting room. No one else has been called in and now the numbers of people waiting are starting to make me shake and my breathing’s increasing. I want to go outside for some air but I can’t in case they call me in.
11:30am arrives, I’m shaking like a heroin addict (I’m not one, just throwing it out there), on the verge of hyperventilating and I can barely breathe with the scarf covering my face so people can’t see what’s behind it. Why didn’t I shave, you ask? Well see, the impending medical had exacerbated my depression to the point where I wasn’t able to look after myself properly. Because severe depression does that. It’s one part of the condition that I hate the most. Also, if my money’s stopped, I wouldn’t be able to shave my face so they might as well see what the reality is. My boyfriend manages after some negotiation with the receptionist to get me seated in a hallway away from people so I can try to calm down. The G4S security guard is looking on smugly, listening to a personal radio (we can hear the tinny sound of music) with his feet on a desk. It’s not like the Jobcentre where someone could throw a punch at you, those who go to assessment centres aren’t likely to kick off because they’re sick/disabled.
By 12pm I’m having a full-on panic attack. Spitting out phlegm on the floor, can’t focus on anything, crying constantly, barely able to support myself in an upright position on the chair. Boyfriend is now furious, G4S guard says he can’t help and smiles smugly, tells boyfriend that if he doesn’t calm down he’ll be thrown out. A staff member comes through to me with a box of tissues which are doing little to help as the obstruction in my nose from phlegm is coming back as soon as it’s cleared. I then get told someone is available to see me and get taken into an assessment room, assisted by a staff member, boyfriend and my walking stick. The physical is skipped again because I’m obviously in no fit state although the panic attack’s starting to subside. Boyfriend gets told he’s allowed to answer for me and I’m asked if I consent to this which I do as I’m barely capable of talking by this point. The guy doing my assessment says he’ll keep it to the bare minimum as it’s obvious I shouldn’t have been kept waiting for that long and boyfriend points out that what happened that day was forewarned about on my ESA50 which they have sitting right there on the desk. Assessor looks sheepish and tries to get through the options on his screen as fast as he can. By the end of the assessment (which lasted about 10 mins) I’m able to contribute on a couple of questions with short sentences. We leave as fast as I can manage, call a taxi and get back to mine. Boyfriend has a small breakdown in the kitchen as he’d never seen me as bad as I was that day after a year of dating. He has depression himself and his dad was in hospital at the time. A week later I get the decision that I stay in the Support group. Now the waiting game begins once more for the next round of torture, earliest will be September next year when I get forced onto PIP from DLA.
So, whether you choose to believe me or not, whether you read all that or not, that was the reality of my ESA medicals. Iain Duncan Smith has a lot of answer for as do the constant cuts to mental health services. So do the people who buy into the ‘all benefits claimants are scroungers’, especially those who are claiming Child Benefit, Housing Benefit, Tax Credits or pensions. Because those, my friends, are also benefits. I can’t wait for the day that this country wakes the fuck up to what’s happening to the sick and disabled because after 6 years, it’s not fucking funny any more.
Also would like to mention that the story that ITV and others have reported on about this woman doesn’t appear to be on the Daily Mail, the most circulated newspaper in the country. Shocked? You shouldn’t be.