How to assess someone properly

Sarah's Work Capability Assessment was not conducted by Atos using a computer-based tick box system, but by a doctor who had knowledge of her rare condition.

 

I have an uncommon condition called Primary Biliary Cirrhosis (PBC). As well as being uncommon, it is poorly understood. All this is important in the context of the WCA and LiMA (the software used by Atos) because they are designed to standardise things. You can't standardise the unpredictable.

 

I first became ill in autumn 2011. I couldn't stay awake and my brain function had gone from pretty good (though I say it myself) to 'barely able to remember my own name' some days. It took 9 months to get a diagnosis and it took another 15 months after that for the doctors to acknowledge that my tiredness, pain and cognitive problems are related to the PBC. 

Having to fight to get it acknowledged was beginning to wear me down and I know that I was dangerously close to depression see-saw. On top of it all, I had the WCA looming.

But I was in a privileged position.

 

Although I work in the UK, I live in Ireland. So my WCA was conducted by a doctor from the Irish Department of Social Protection. It had taken about 14 months from the date of my application for ESA to get the assessment so you can imagine the level of stress involved.
 

I went in for my assessment and said to the doctor 'I know that this is an unusual condition so I brought some information for you - hopefully it will explain things a bit better.' Well, to my utter astonishment he said that he knew about PBC. He went on to conduct the kindest, most considerate, most comprehensive and most understanding assessment that I have encountered in the past two years. The result was that I ended up in tears, bawling my way through it and remembering everything that I needed to tell him. 

There are three key points here.

First, the assessment was based on a conversation and a form - NOT the computerised assessment. He went into every detail and allowed me to speak. I got the opportunity to explain things like 'today I can come here and do this because yesterday I didn't do very much and I have written off the next 3 days to come round from this effort.' I was able to explain what I could do without effort 18 months ago that I don't even think about doing now. 

The assessment took the same amount of time as other people report in the Atos version (up to 45 minutes) so it was not just a matter of taking more time. It was that the assessment actually addressed the matter of work and disability - something that the Atos version doesn't do.

Second, because he KNEW the condition, we were able to talk properly about the impact of the illness on my day to day life. 

Third, he treated me with compassion and dignity. At no point in the assessment did I feel like I was just a number or a nuisance. 

When I walked out of that assessment (bearing in mind that I didn't know what the outcome would be and he gave no clues) I felt as if someone had lifted a huge weight off my shoulders - literally. Even my mum, who is used to seeing me come out of appointments close to tears, noticed the difference immediately.