Saturday, 23 August 2014

My life is more than tick-boxes

So ATOS assessment day is tomorrow. Currently I'm in bed listening to the How To Train Your Dragon 2 soundtrack (which somehow has a calming effect, and is pretty brilliant) as even thinking about it is making me want to give up and live in a hole. According to the many people who have been through the process and a number of ex-assessors the assessment aims to catch you out with the mentality of guilty until proven innocent. This is making me nervous, partly because I have an invisible illness that fluctuates and can't be seen, and partly because it's making me think of all the things I can't do in my life so that I can give the best (or rather worst) picture to the assessor. My mother woke me this morning with a lovely long list of reasons why my life is rubbish compared to most 20-year-olds. My positive-thinking ambitions are struggling to substantiate themselves right now. Cake has helped though.

I'm not normally one for going on about people doing extraordinary things despite illness or disability because it makes the others look weak and leaves room for ignorance and judgement, but this situation goes the entire opposite direction by actively searching for the limits of the disabled and chronically ill. I can see the difficulties of such a task in that there are always going to be people who lie or exaggerate but the other side of the coin is the systematic putting down of thousands of people who have way too much to be put down about already.

I wrote this the day before my assessment but didn't post it because it broke my rules about when best not to post. I am glad to say now that while the whole thing was stressful it was a much better experience than I expected.
The assessor told me she had some knowledge of CFS/ME which was reassuring from the outset and was kind enough to empathise with me once the assessment was officially over saying 'it is so hard' and also slightly surprised me by saying how draining it was for her to be a part of the process. While the form is a one-size-fits-all that in reality fits nobody there was some humanity in the assessor which really helped.

For anyone due to have an ATOS assessment for PIP soon here is a summary of what happened in my case:
  • ATOS had rented a room in an office building and so shared the building with lots of other companies.
  • I didn't have to climb any stairs but the distance to the assessment room itself was a hike.
  • The assessor got us settled and then announced that she was ready to start the assessment and waited for me to say I was too before starting. Whether she took anything I said or did beforehand into account I don't know.
  • I was prompted at the start to say as much as possible saying 'the more I know the better picture I can put on my form'.
  • She asked objective questions from the form (e.g. how far can you walk? can you make a journey independently?) but also prompted me so that I was specific and only talked about my bad days.
  • The questions were fair although difficult in some cases because some of them referred to my cognitive ability, which is dependent on my fatigue at the time and is worsened by moving around, whereas the ability to move around was only one specific question referring to walking.
  • She asked at the end if I had anything I wanted to add. I suppose here you could include things you feel are necessary that they don't cover in the form (e.g. laundry)
  • The end of the assessment was clearly stated and while again she may have observed my behaviour after, she did move away from the computer and talked in a more chatty and informal manner.
  • It did feel a little pointless in that the questions were very similar to the form I'd filled in and so really there was little to add but maybe ATOS like an objective assessor.

Thursday, 7 August 2014

The big day is almost here

After almost a year, I have finally received a letter from ATOS giving me an assessment date. ATOS is the company the government decided was capable of assessing who needed financial support to help them live normal lives with a disability. There are two disability benefits PIP (Personal Independence Payment) and ESA (Employment and Support Allowance). PIP (not to be mistaken for PPI) is a benefit for anyone with a disability to help with the cost of carers and getting around. It replaced DLA just over a year ago. ESA is for anyone with a disability who is unable to work due to their disability.

Sounds straightforward enough. But how do you assess whether someone is eligible for such benefits? As a student, I can't get ESA anyway as Student Finance covers enough and I'm not out in the big wide world just yet, but just what criteria would you use to define a person as unable to get a job? And if they were capable of maybe getting some certain types of jobs, would there be enough available for them to be hired anyway? Similar questions apply to PIP and I have talked (or moaned rather) about this already on this blog).

It seems ATOS' criteria basically includes any person who is living. Maybe a slight exaggeration but it does seem to be the only consistent criterion. I have heard from many people with severe CFS/ME who are bedbound and are in agony at the sensation of any light, sound or touch, who have had to have their assessment from their bed classed as capable of getting a job. Thankfully ATOS is ending their contract early and very soon will no longer be conducting assessments. In the meantime I have an assessment with them. As someone who can live and breathe I probably won't get any benefits so that's at least 2-3 hours of my day in which I could be resting or doing something productive  instead humouring a person with a series of tick-boxes. If you hadn't noticed, I'm very much a cynic. The world is starting to prove me wrong on these things, but it's taking its time.

Alongside this, I have been decluttering in what I call Operation Room Renovation. This has been taking a while as I have limited energy, concentration and ability to stop being sentimentally attached to every item. The Bible talks about living as simply as possible as humans tend to fill their minds with belongings as opposed to God, and even the ancient Romans believed in living simply (well some of them anyway, such as Horace). My concentration is so bad that hopefully removing some of the items that take it up may leave some room for the things that matter. Currently my absent-mindedness is showing itself in the number of glasses of water I have filled, left somewhere and then forgotten about. There is usually at least 3 in the house somewhere at one time...