ESA: WCA descriptor review – help wanted

August 11, 2011


I am currently involved with some further work on the report for Professor Harrington on fluctuating medical conditions. The aim is to improve the Work Capability Assessment (WCA) descriptors that currently form part of the Employment and Support Allowance assessment in relation to fluctuating conditions such as ME/CFS.

Our report has also recommended that a new descriptor covering fatigue and/or pain should be added to the current WCA list.

In order to strengthen the case for a new descriptor covering fatigue – as it forms a key part of the underlying disease process in a number of fluctuating conditions such as ME/CFS, MS and HIV/AIDS – I need some more personal evidence from people with ME/CFS.

This should be in the form of a short – no more than 200 words – personal description of how the various aspects of on-going debilitating fatigue, as it applies to ME/CFS, impacts on a person's capacity to carry out meaningful regular work.

The description could include the effect of pre-existing fatigue levels of travelling to work, trying to sustain all aspects of work-related activity during the day on a regular basis when you are trying to cope with fatigue/fatiguability, and the way in which exacerbating fatigue can then affect other ME/CFS symptoms. The description must focus on fatigue (which this descriptor is going to assess) and not stray into other symptoms that may already be covered by another descriptor.

This has to be a genuine personal account. You will be identified in the report by a first name or pseudonym.

If you have applied for ESA and not scored sufficient points using the existing descriptors please add this information as an additional short paragraph.

Replies can be sent via meconnect@meassociation.org.uk

I need to have this information during the next seven days.

Thank you

Dr Charles Shepherd
Medical Adviser, The ME Association

9 thoughts on “ESA: WCA descriptor review – help wanted”

  1. I would suggest that malaise is just as important as pain and fatigue.

    The three can be difficult to differentiate between for a patient – and rightly so, we don’t exactly apply the scientific method to our self-assessments.

    One of the most frequent things I notice is that the worst of my symptoms are always exacerbated following exertion. Inability to concentrate, postural hypertension, muscle pain, muscle stiffness. Undoubtedly I also feel fatigued as well. It’s just hard to differentiate reliably between the deterrents and barriers toward activity as a patient – as it should be.

    If we were actually tested by the NHS for the things we experience which do leave markers – noted by peer reviewed science and incorporated into the most up to date diagnosis criteria (ME-ICC), then we would have much fewer problems dealing with ESA/WCA.

    Undoubtedly there is a utilitarian approach to reducing the stress ME patients endure as a result of these poorly informed, poorly executed tests. But ultimately these problems are resultant of money saving diagnosis that conflate what are ostensibly multiple differentials into one unified diagnosis dustbin.

    At some point the MEA will have to become a little more muscular and a little less moderate about the real issues here. I’m bored of reading articles by people with selective hearing towards facts.

  2. Dr Charles Shepherd

    I don’t know if you have read the very detailed report that we have prepared for Professor Harrington on fluctuating medical conditions and the improvements to the WCA descriptors that we have recommended. A great deal of time and effort has gone into preparing this 67-page report since the beginning of the year and it has been well received. If not, could I suggest you have a look at it because this will help to explain why we are trying to persuade the DWP to include a new WCA descriptor that covers fatigue and/or pain. The section on fatigue is not a boring read.

    I fully appreciate the very characteristic type of exercise-induced fatigue and post-exertional malaise that is experienced by people with ME/CFS. However, we are working on a new WCA descriptor that will cover the type of debilitating fatigue that is present in a range of medical conditions (as well as ME/CFS) such as MS, HIV/AIDS, rheumatoid arthritis, inflammatory bowel disease – where it forms part of the actual disease process and is often a very prominent symptom that impacts on all aspects of daily living.

    There is no way that the DWP is going to include a new WCA descriptor on fatigue that only relates to ME/CFS – it has to cover chronic debilitating fatigue across a range of conditions if we are going to stand any chance of having it accepted.

    I hope this is not going to turn into a discussion on fatigue – that can be done at another time.

    This is a very simple and rather urgent appeal for some short case histories that will support a new WCA descriptor that will help to make the ESA assessment process fairer for people with ME/CFS.

    I would therefore appreciate some support from the ME community – because nobody else is going to do it.

    1. Actually defining fatigue concisely might help patients to provide you with better answers. What each individual considers to be fatigue will doubtless vary based subjective perceptions of experiencing the illness.

      An attempt:-

      Before activity, I feel fatigued. While I participate in activity, I feel fatigued and my levels of fatigue increase much more rapidly when compared to pre-illness levels. The efficacy of resting states and their ability to remove the presence of fatigue is greatly reduced when compared to pre-illness levels, therefore I continue to feel fatigued.

      That’s a bland answer, but pretty much covers it.

      “There is no way that the DWP is going to include a new WCA descriptor on fatigue that only relates to ME/CFS – it has to cover chronic debilitating fatigue across a range of conditions if we are going to stand any chance of having it accepted.”

      That’s quite depressing really isn’t it? Inaccuracy for brevity’s sake? But I understand your point.

  3. Usefull to read that report. It carries some cross-condition case study examples too.

    Will do me best to get something written poste haste!

  4. I will have a go. .. it would be good to be able to help a little.

    I am unclear what you want though and have read the article twice..sorry but my brain resembles a colander for holding stuff.

    Do you want to know how fatigue stops me doing things despite trying?

    Or how it limits things once I have started?

    What sort of activities do you want discussing?

    Should it be general stuff (covers more ground) or specific stuff like only half cleaning teeth as fatigue takes over.

    Does fatigue include the weakness and aching or are we sticking to the exhaustive need to sleep?

    Sorry to be a pain but I wnat to help and don’t know how to start

  5. Dr Charles Shepherd

    New report calls for major changes to disability assessment, 11 May 2011 | ME Association >>

    https://meassociation.org.uk/?p=6083

    This is our report on fluctuating conditions and the recommendations that have been made to Professor Harrington regarding changes to the wording and scope of the WCA descriptors.

    We are currently discussing the contents with a Scrutiny Group appointed by the DWP. Our most recent meeting was on Monday this week.

    There are examples in the report on the sort of case histories that are required.

    Please have a look at the section on fatigue if you are uncertain about the reasons why we are recommending a new descriptor that covers fatigue and/or pain as it applies to a range of fluctuating medical conditions.

    CS

  6. I will have a look for some examples and see what I can write.

    posted this to my local group and another facebook ME group

    Thanks

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