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Please provide your feedback for this research looking at lupus and employment - Benefits system

Please provide your feedback for this research looking at lupus and employment - Benefits system

This post is for the discussion of one of the next important questions in the research of lupus and employment. For more background about this, please read the post here -

Ideally we would like to ask assessors in Capita about their knowledge, skills and experience – we are not sure how we will contact them but are thinking about this.

Please send us any questions or ideas you have about the benefits system – we could certainly like to ask people working in Access to Work and other DWP offices about their knowledge skills and attitudes.

Please share your feedback in the comments below or if you would prefer not to post a comment below, you can email your feedback to

7 Replies

The report in the current Private Eye on the recent Commons select committee on work and pensions is pretty damning. According to PE, ATOS and Crapita[sic] between them employ only 4 doctors between them to carry out PIP work, and none of them are directly involved in assessments. Even more worrying, "no specialists were involved in assessing even the most complex conditions" and over 100,000 assessments have been overturned at appeal tribunals.

I'd be interested in knowing what Capita/Atos have to say about the assessment of complex conditions such as lupus and other systemic auto-immune problems - and about what people working for the DWP know/feel about the competence of Capita/Atos to carry out assessments of complex conditions. What ideas do they have for improving the situation? What plans do they have for involving patients/advocates (including organisations such as LupusUK) in the planning and delivery of the assessment process?



Thank you

We very much hope to talk to health assessors but are not quite sure how we will contact them as uncertain that the organisations will 'let us in' - and if we advertise for them privately how we will know that they work for the organisation in teh right capacity - thank you for your contribution and we will ensure it is taken into account in our final protocol

With best wishes

Sara Booth


For me one major area deserves proper consideration as to its feasibility: ESA, as currently conceived, provides no scope for those with long-term, fluctuating conditions to work if and when able - the system simply rules them out (if in the support group) or pushes them into work related activity if in that group. Neither group may be entirely appropriate to some people, what I would term 'third group' i.e. those with long-term conditions who, according to best current medical knowledge and treatments, will not recover, or recover sufficiently to regularly be able to commit to paid employment but who may be capable, on an ad hoc basis, of some level of paid work. There is of course permitted work but this is time limited, etc, and is designed to ease those who are sustainably improving back into the long-term workforce. There needs to be a middle way, in which ESA claimants who are in this 'third group' whereby they could still retain full benefit when fully unable to work but, if able to do some work at times - probably self-employed - would be able to accept remuneration (probably very modest) but still retain some level of ESA during those periods.


Thank you - you have highlighted a very important area - one which the DWP insists is covered by universal credit.

We will certainly be covering this in the research (if it gets funded) and thank you for your comment

SAra Booth


The assessors don't have scope within prescribed questions to consider SLE and other fluctuating conditions. I was having a good day on my work capability assessment and had to contest the decision made. Fatigue isn't taken seriously. The other thing that really was infuriating was the fact I had undergone a twelve month process with my employer (Local Authority) and three different medical assessments to get medically retired and the assessor dismissed all of this evidence to award zero points. I won my appeal, but shouldn't have had to appeal.


Sarah I will send you a private email due to my job and confidentiality but it will be tonight when I am able to do so


Do you still need high level DWP and assessment provider contacts? I can provide some.


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