Monday, 12 January 2015

Going back to work from the Support Group

It is by now pretty common knowledge that Sue Marsh has accepted a full time position as "Head of Customer Experience" with Maximus, the company of controversial reputation taking over the WCA from the infamous ATOS.

There has been a lot of understandable anger to this, with many people left feeling abandoned and betrayed. I cannot say I have welcomed the news as I feel we have lost a valuable campaigner and question how much change will be able to be made from within a company which merely implements DWP policy.

However I have been slightly surprised at the backlash at her taking on a job at all. I do understand that there is always the fear that seeing one person successfully returning to work may lead a misinformed public to say that "everyone can do it", or that such a person shouldn't have been on benefits in the first place, but I feel that we ourselves should know better.

The Support Group is a strange beast. Generally we say that it is for those "too sick to work". But this is incorrect. It certainly includes those people but it is far more complex than that and for many it is not so black and white.

On the one hand some people automatically qualify on the basis of some straightforward criteria. These criteria, I might add, are not always ones which mean you cannot work.

For instance one of them I know well since it applies to myself, is that you are unable to walk or propel yourself in a wheelchair for 50m. So in other words pretty much any electric wheelchair user automatically gets into the support group.
While it is tremendously difficult to find a job as an electric wheelchair user, due both to transport issues, access difficulties and employer prejudice, it is not impossible. Disabled people in this position should be strongly supported and encouraged if there are no other aggravating factors preventing them from working. Such people would quite legally go straight from Support Group to full time work.

Other people are in the support group for much less straightforward reasons and may have symptoms which will directly impact on their work. Where the electric wheelchair user may be able to find a job where their impairment is not an issue, for some people this is never going to be possible. Their impairment will affect everything they do.
This group includes many people with chronic illnesses, people with symptoms such as pain and fatigue (not exclusive to illness), mental health illnesses, learning disabilities, and impairments such as speech, hearing or visual impairments.

Among these people I believe we have a further two groups.
First there are those who would be able to work if the perfect job came along with all the right tailor made adjustments. Even then, given that they are in the support group, it is highly likely that even this perfect job would take a toll on their health in some way. This should therefore be a choice and not an obligation.
Then there are those who would not be able to work even if every possible adjustment was made and/or only a few hours a week were required.
EDIT: For an example of the sort of toll even the "perfect" job can take, please read this excellent but hard hitting piece on the blog Benefit Scrounging Scum. @Bendygirl, who recently went back to work, highlights the dilemma between her desire to work, her rapidly deteriorating health, and the need to look after her health. Work, contrary to government policy, is not always good for you.


I was someone who for 5 years had one such "perfect" job in academia as a researcher. I worked on results not hours per week. I could work from home as much as I wanted, and I could work lying down in bed. It didn't matter that I regularly had to unpredictably have a lot of time off or spend time in hospital. I often even worked there.
Later on when I got even sicker, I was able to go part time and it was well enough paid for me to do so.
This job did take its toll physically. It increased pain levels and did make my health quite a lot worse. I chose to do it because I enjoyed it so much and I felt that the emotional and mental boost it gave me was worth the physical downside.

Had I not been "lucky" enough to get it, I would have been in the Support Group of ESA. Vice versa, had I been in the Support Group of ESA at that time and been offered it, I would have quite legally gone straight from Support Group into employment, even though I was very sick and disabled.

However although I am indeed now in the Support Group of ESA, I am now much sicker than I was then. Even if that "perfect" job came up again tomorrow, I would not be able to take it, not at any price.

I think this illustrates quite nicely how different people in the Support Group can be at very different distances from employment depending on how their impairment affects them.
Some could take a job given a non prejudiced supportive employer, an accessible workplace and an Access to Work system fit for purpose.
Some could take that ultra-rare "perfect" job that somehow fits around their impairment and would choose to put up with the downturn in their symptoms.
Some couldn't take any job under any circumstances.

Nearly all would like to work if it were possible...

16 comments:

  1. I don't think that the cynicism of Sue Marsh is simply down to her going into work from the ESA Support Group. I think it is more down to her seemingly going straight from the Support Group to a high powered, stressful job that would usually involve long hours. After all, if you are employed and you suffer a long term illness, your eventual return to work will be carefully managed and phased in over several weeks. Moving straight from the Support Group to a job where you can choose your working hours or working one day a week, for example, is obviously totally different.

    I hope her job will lead to significant improvements in the WCA process but I very much doubt that it will, and I think she is being very naive and also rather arrogant in believing that she will be able to change anything of substance.

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    1. That is all true, but no one knows the exact conditions, job adjustments or support Sue will have, nor is it my place to speculate.
      What I am concerned about is that there appears to be an unexpected backlash coming out of this which is saying that people should be unable to go from the Support Group into full time employment. This is simply not true for everyone, dependent on the effects of impairment and provided the job is the right one and the right support is in place. For others of course, work is unquestionably not an option.
      I am just slightly worried that people will feel that they shouldn't even consider working if they are in the Support Group.

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  2. Or worse we may be in for a dose of 'Paralmpianism' or "If she can do it, you can." And of course as SpoonyDoc has already written, the right support is simply just not what it was when we got our degrees. In the world of work as opposed to school or University studenthood, like nostalgia, work focussed support probably never was what it was.

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    1. In the UK there are indeed current well documented problems with the Access to Work scheme which helps cover the extra costs incurred by a disabled employee. I highly recommend reading the DNS (Disability News Service) coverage of the subject for better understanding of the issue.

      When I personally was still working Access to Work was vital to my being able to do so and covered a variety of essential equipment and costs arising due to my disability. At the time the scheme was crtiticised for not being well enough publicised but in practise it worked well if you did know about it!
      It would seem this is not the case at the moment for many people, making it doubly difficult to return to work.

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  3. Part of the problem is the dichotomy of "support" vs "work related" within ESA. This is for many reasons a nonsense but occurs because ESA tries to be too many things rather than being an out of work benefit for working age adults.

    The off-flow percentages into work are very similar for both cohorts which suggests health, access and prejudice is constant regardless of approved designation.

    As you discuss, the distance to appropriate work is more important. I agree. But we can't have a serious discussion on that while ESA is used to compensate for other failings within health and social care because that compensation is an additional barrier.

    An overlooked recommendation of the Barker Commission into the future of Health and Social Care was to replace the age-qualified Attendence Allowance with a needs-qualified Care and Support Allowance. Such a benefit in conjunction with DLA/PIP would allow ESA to function as an out of work benefit for sick and disabled people who have a spectrum of barriers between them and the workplace.

    Removing the care element from ESA means that the designations of work-related and support could be scrapped. Especially if you built in an opt-in culture to receiving support to enter employment. To be clear, you would decide when you were able to take steps towards the workplace, not some DWP employee sitting with some pieces of paper.

    Such a redesign would remove the need for the work capacity assessment as a gatekeeper to ESA. In this situation, a civilised society would recognise that sick and disabled people have additional barriers to the workplace so qualification to the benefit would be based on being sick and/or disabled.

    The reason for this ramble is that I feel strongly that the current ESA structure creates dysfunctional thinking across the board. We will never get a humanised system while we contort ourselves to strange shapes designed without sufficient thought.

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    1. "qualification to the benefit would be based on being sick and/or disabled". This sounds good, but how does it work? On diagnosis? Not everyone who is sick or disabled has a diagnosis. It took me 4 years to be diagnosed as my own illness did not develop in the "traditional" manner. Furthermore two people with the same diagnosis could have very different impairments. One could be disabled and have barriers to the workplace and the other not.
      I don't like the WCA, but I don't see how you can do away with some sort of qualifying test altogether, unless you go down the citizen's income route.

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  4. Good article ~thumbs up~ I have referred to it on a new thread on the message board :-)

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    1. Thanks. Hope the message board is running well. :)

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  5. OK I will admit I am one that feels let down by Sue.

    The idea of her, so vocal against the system that treats sick and disabled as scum going to work as part of the tool that system uses to belittle us, Yes, part of the tool, it is not Atos that decides on the fact that if someone can walk 40 metres in agony to an assessment room they can therefore take up a job as a postman! The DWP are the ones that set the rules.

    In my opinion, all Sue may be able to do is soften the letters that Maximus send out so that there is less stress caused by receiving them or ensure that the waiting rooms that smell of urine are cleaned more often. As to changing the descriptors or the system, no chance.

    Then again, this is the woman who apparently is on the borderline of dying because she only has a small amount of bowel left (any more removed and she would die apparently), someone that is in pain all day and can't get a full days work done because of the fatigue induced by her condition. (OK, she has more bowel than my wife who has absolutely no small or large intestine and is fairly fit) She blogs about this and then a few months later is diving into a full time job. Was she over-rating the level of her illness?

    So, there she is gone from Spanner in the works to a cog in the machine.

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    1. Just to correct the bit about Sue's health, for others reading - she has said that if she has any more bowel removed she'll have to go on intravenous nutrition.

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    2. I have to say that I also have strong doubts as to how much can be done in the role Sue has taken on.

      As to the end of your post, I don't think this is for anyone to judge or speculate. Nobody knows how much support Sue will be receiving or the exact conditions of the job. Nobody knows how much better she is feeling after the changes following her last operation.

      I also have a fluctuating illness and have been subject to people questioning how sick I really had been when they saw me in a better spell. I won't do it to someone else.

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  6. This is a really balanced piece. I definately feel that it's not black and white, it's not just about level of impairment but access to support as well. It pains me that so many people fail to understand this. Also your point about choice vs obligation. Sue has made a choice. It is not a choice I would make (I'm in the SG currently, and my husband works) and I worry that it leaves Sue open to financial uncertainty should her health take a turn for the worse.

    I'd like to add that there are also some people who start their own business and build it around their health needs, often working from home. This is another way in which people who could be eligible for the support group can find their way into work.

    I think the SG can also give people something that WRAG doesn't, and that is time. Time to adjust and adapt to their condition without the pressure of having to prepare for work. I am much, much clearer (and realistic) now about my potential and options for work, having spent over a year in SG, than I was after a year in WRAG. My condition is also much more stable and I believe that, in part, this is due to the fact that I've had financial stability since being in SG.

    Being in the SG has given me the freedom to focus on my condition - managing it, adapting around it and getting support and equipment in place. One of my biggest problems with the fundamentals of ESA's design is that there is a complete failure to understand that people need time to adjust, and that there is a huge amount of personal responsibility involved in adjusting and adapting. Nothing is handed to you on a plate, you have to apply for things, ask to be assessed or referred for things and take responsibility for things like pacing, taking your medication, doing your physio or whatever else you need to do to stay as well as possible. It can require a huge shift in mindset and people need time and space for that. For many people, work will only be possible once everything else is in place.

    Being left alone means people find their own solutions. That is ultimately how it is possible for people to come out of the SG and into work, or remain in work when they could be in the SG.

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    1. As an aside to the very valid point about people starting their own businesses, there can be issues with this as many private tenancies forbid people from doing so in the lease agreement. I believe it is something to do with the landlord insurance.
      A surprisingly high proportion of people in the private rented sector are disabled and this can unfortunately stop this avenue for them.

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  7. Thank you for writing this piece.

    I think it is worth making clear that for some people in the support group, considering a return to work has another angle that has become much worse under this government, and that is the benefits regime.

    I currently do permitted work of six hours per week. I find it to be a good indictor of when I might be capable of more. Although at the moment it's out of the question, should I find that I could do more hours, I have to balance taking that risk with what will happen if I try and find that I can't. What if I go back to working full-time hours only to find that my health prevents me?

    It's not as easy as stepping back into the support group.

    All too often it's not even possible to claim ESA, because I hear of more and more people who are very poorly being found fit for work. And if you're refused, then what? Jobseekers, impossible workfare, being required to do so many things to look for work that it's more difficult than the job you already found out you couldn't do?

    You're bound to fail, because you're not well. It all ends in sanctions, and if you're already poor, the risk you are considering taking ends in homelessness, starvation and utter destitution.

    I don't mean to depress anyone, but that is a real fear, which as time goes on is becoming more and more a real thing that happens. I don't want that to happen to me. I need to be absolutely certain when I am ready to return to work full-time.

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