ESA: Could ATOS/DWP think I’m cheating?

My primary medical condition is quite rare and not fully understood. There are multiple forms of the condition with further different forms added as research progresses. My own form is progressive, often leading to 100% incapacity. It is much less common in the UK that in North America and some parts of Europe. In speaking with medical personnel about my condition I often receive a blank look of total ignorance or a sudden “Ah yes! My partner’s stepfather has a cousin twice removed who works with a guy with that!”

Over many years since diagnosis I have set out to become my own “expert” so as to explain my symptoms and limitations when seeing a GP or making a benefit claim. Explanations of the condition on DWP and NHS websites simplistic and wildly over-optimistic in discussing treatment options including some high-risk procedures. These sites were updated just before the introduction of PIP!

Anyway, last night I read through a couple of my draft ESA 50 with a family member. I stated my diagnosis and prognosis and how my current level of disability affects and limits me with reference to the ESA 50 descriptors. My family member’s reaction was that ATOS/DWP might think I had searched the Internet for information and simply applied it to my own case. He added that I sound determined not to work.

It has never occurred to me that a claimant who shows some knowledge of his/her condition and can describe its multiple disabling effects in clear clinical terms would risk a suggestion of cheating but I’m desperately worried now. What do you think?

Thanks for your reply, Gordon.

The family member has a basic knowledge of my diagnosis and is aware of the majority of the limitations the condition imposes in my daily life though not their full extent, which doesn’t make pretty reading. Some of it has never been discussed before.

The family member has no experience of disabling illness or any form of disability-related benefit. Certainly, he has not accessed this site and read the ESA guides and experiences of claimants. I’ve spoken with him in the half hour after posting my message and explained that what isn’t included in an ESA 50 cannot be considered by ATOS and the DWP. If it’s all down there and the result is not what I hope for then I have good grounds for appeal.

In short, I’m going to trust my own judgement.