Sickness benefits, suspicion, and anxiety

In a guest post, Kayleigh Garthwaite talks about her recent research with sickness benefit claimants.  Prompted by a hostile email from a GP after speaking about her research recently on national radio, Kayleigh reflects on the real barriers that sickness benefit claimants face, and the challenges of living in a climate of institutionalised suspicion.

What does it mean for sickness benefit claimants to live in a climate of suspicion?

For the past three years, I have been studying the lives of long-term sickness benefits recipients in North East England as part of my PhD research. Recently, I was asked to appear on BBC Radio 4’s ‘Thinking Allowed’ to discuss welfare reform, following a symposium organised by Ben Baumberg and Ruth Patrick in Leeds.

On the programme, I spoke about how a deep-seated fear of welfare reform pervaded the daily lives of people in the study. Some people were afraid of the arrival of an official looking brown envelope – a clear indicator of correspondence from Department for Work and Pensions (DWP) – and others speaking about how impending reform left them feeling suicidal. This may seem extreme, yet recent research by MIND has  shown that 51% of people experienced suicidal feelings at the thought of attending a Work Capability Asssessment carried out by Atos. This fear is genuine and all-encompassing. Alongside this fear is not only a mistrust of the entire system, but a suspicion surrounding other sickness benefits recipients who are being labelled as the ‘Other’, and as scroungers who are, in fact, not genuine. My research also shows that there is huge stigma and shame attached to receiving sickness benefits.

Suspicion

Following my appearance on Radio 4, I received several emails agreeing with what my research found – from disabled people, academics, psychiatrists, councils, and Chief Executives of charities. Yet there was one email that stood out from the rest. This came from someone who identified themselves as a GP who had 30 years of experience, and who had been assessing people who are claiming sickness benefits for the past decade. The email suggested that:

Having been immersed in this environment for so many years, I can assure you that the overwhelming majority of individuals receiving financial assistance for disabilities, have in fact very little or no disability, and are able to live mostly normal lives, and could very well work if they chose to. I have to tell you that nearly all the medical people that I know, who work in this area, share my opinion”.

The email goes on to say that “millions of fit and able persons live nearly useless lives, feeling sorry for themselves, and feeling themselves to be disabled when they are not at all.” I struggle to believe that this email represents the consensus or, if you like, the general practice of a majority of other GPs and of those working in the medical profession.

Reality

Yet for the people I spoke to, I must wholeheartedly disagree that people are not genuinely sick or disabled. The people I spoke to had multiple health problems that they negotiated every single day.

Often, people had lengthy histories of working and had to leave the labour market due to an accident either at work or elsewhere. These people are not “people who have minor or insignificant disabilities [who] come to believe that they are far more disabled than they are”, as suggested by this particular GP; they are genuinely ill people who have no choice but to claim for sickness benefits. In some instances, participants did not reveal their status as a claimant to close friends and family, and others even under-claimed benefits as a consequence.

Take Kirsty – a 33 year old ex-prison officer who had previously worked for 10 years in a young offender’s institution. She suffered an accident at work – a heavy metal door feel on her neck and left her with chronic back pain for life, alongside temporary paralysis of her neck and left arm. Kirsty deplored receiving sickness benefits, and at the time of her interview, she informed me how she had stopped claiming Incapacity Benefit three weeks earlier as she said:

It just doesn’t seem right that I can claim from the system but I’m not paying into it, it’s probably crazy cos I did pay into it for a long time and people say it’s something I’m entitled to and I should be claiming it, but I just don’t feel comfortable claiming it”.

They also showed a strong work ethic and most certainly did not “live nearly useless lives, feeling sorry for themselves, and feeling themselves to be disabled when they are not”, as the email suggested. One such example is of a woman, Marian*, 45, who, after 11 years on IB, returned to work (despite the fact it worsens her arthritis, it helps with her mental health problems). Marian said:

“I still suffer from depression but I’ve found that working, it’s helping me, it’s getting me out of the house, meeting people and giving me a bit of extra money. I feel a lot better in meself, mental health wise and its pride that I’ve got a job and I’m sticking it. I mean sometimes it is difficult on a morning when you can’t be pestered but I still drag meself out”.

Frankly, it is little wonder people fear the Atos medical assessment, if – and it’s a big if as far as I am concerned they are being judged as not genuinely disabled at all before they have even set foot through the door, according to this particular GP’s view, in what is supposedly a fair and impartial process.

Ironically, the views outlined in the email correspondence only seek to confirm what my participants have told me – that there is something fundamentally wrong with the assessment process and sick and disabled people certainly have good reason to fear it.

*All names are pseudonyms

This post was edited 31/10/12 to correct a slight error in the results of the MIND research cited above.

About Ben Baumberg

I am currently a Lecturer in Sociology and Social Policy at the School of Social Policy, Sociology and Social Research (SSPSSR) at the University of Kent. I also helped set up the collaborative research blog Inequalities, where I regularly write articles and short blog posts. I have a wide range of (too many...) research interests, at the moment focusing on disability, the workplace, inequality, deservingness and the future of the benefits system, and the relationship between evidence and policy. You can find out more about me at http://www.benbaumberg.com
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14 Responses to Sickness benefits, suspicion, and anxiety

  1. Kat Smith says:

    Great post Kayleigh. I think it’s really important to challenge professionals who make what can sound like evidence-based claims, without actually providing any supporting evidence (beyond their own views and perceptions of what their friends/colleagues might believe). This is particularly true for doctors who, by virtue of the work they do and the training they’ve received, often have high levels of legitimacy and credibility in policy and public debates. For a contrasting perspective from GPs, you might be interested in (and might already have heard about) the Deep End Project (http://www.gla.ac.uk/researchinstitutes/healthwellbeing/research/generalpractice/deepend/), which involves collating the experiences of GPs working in some of Scotland’s most deprived areas. A 2011 report resulting from this project, for example, argued: ‘General Practitioners at the Deep End are concerned at changes to the benefits system which appear to seek to distinguish between the deserving and undeserving poor on medical grounds. Benefits reform should reflect the realities of life in Scotland’s poorest communities, and guarantee a basic standard of living for all’ (http://www.gcph.co.uk/assets/0000/2586/FINAL_VERSION_for_publication_without_financial_statement.pdf). Interestingly, I think, the report also advises, ‘Nothing compares with home visits for trainees to acquire an understanding of the realities of patients’ lives in deprived areas’. Some of the findings emerging from this project were covered in a Guardian article this year that you may have seen (http://www.guardian.co.uk/society/2012/jun/20/mental-health-benefit-claimants-risk) – it raises some similar issues to those you highlight in this post which suggests, at the very least, that the GP who sent the email you refer to in this post has rather a select network of friends/colleagues. Look forward to reading more of your work Kayleigh – it’s much needed…

  2. Jo Cairns says:

    Great interview and blog, Kayleigh.

    I echo Kat’s point about the need to challenge professional (or so-called ‘experts’). It comes back to the ‘expert’ versus ‘lay’ divide in the production of knowledge and what drives political decisions. Why can’t there be more of a dialogue between the two?

    I have, however, found in my own research that sadly these opinions are shared within communities as well and don’t just stay in the realms of GPs or the House of Commons.
    “Unemployment has become a way of life”, as one interviewee puts it. More specifically, intergenerational unemployment is presented as an issue in my research, surrounded by a “mentality” around not working. Admittedly, these comments were not made directly about those claiming incapacity benefit but I think there is most certainly a wider issue here surrounding unemployment and the negative stereotypes that are (re)constructed through dominant discourses that emerge from the top and trickle down.

    Coming back to benefit reform, I just think this government’s priorities are all wrong, not just in terms of benefits, but also education and the NHS.

    I really look forward to hearing the responses to the GP email and further discussions around these issues.

  3. Reblogged this on North East Child Poverty and commented:
    An excellent post from Kayleigh Garthwaite on the Inequalities blog. The research highlighted was carried out in the North East and the blog is well worth reading in full, especially the response from a GP to her appearance on Radio 4!
    Thanks, as ever, the the Inequalities blog for allowing us to re-blog it here.

  4. This is a wonderful post. I study the history of pain without lesion, which in a sense is coextensive in a late 19th-early 20th c. context with histories of suspicion over feigned illness (malingering) and welfare policy. So one of the things that I believe helps contextualize some of the observations you make in the present is the historical pathways that lead here in both Britain and the U.S. (I am doing a bit of comparative history on this point). Although the idea that through bodily pain and suffering the Truth will out is at least as old as the Middle Ages — indeed, it is part of the philosophical and theological justification for torture in judicial practice — I think in the modern era real concern over feigned illness and welfare benefits really do not get started in earnest until the 19th c.

    In the U.S., this primarily is applied to black bodies earlier in the c., as owners in chattel slavery evinced constant concern over the extent to which their slaves were feigning illness to avoid work. The Civil War extends such concerns to white bodies, and most concerns over malingering outside of a slave context usually arise in regard to wounded and disabled veterans. This accelerates with Victorian anxieties over forensics, authenticity, and deception, and reflects larger social anxieties with industrialization and urbanization.

    In any event, because of the U.S. Civil War and the enormous federal pension benefits, suspicion, stigma, and doubts about the merits of those seeking benefits really takes root in the late 19th c. (and in England grows primarily in medico-legal contexts surrounding railroads until WWI). I can’t help but believe tracing some of these pathways is crucial to understanding some of the rich evidence you’ve collected here.

    • Ben Baumberg says:

      Great to hear a comparative perspective on this. In the UK, my understanding (from e.g. Deborah Stone’s The Disabled State) is that there are concerns dating back at least to the 15th-century within debates about whether someone was a ‘true’ vagrant or not. But I can definitely believe that the debates start in earnest much later. And would be really interested in hearing more about both the debates in the US around slavery and after the civil war, and in England around the railroads!

  5. politicalnurse says:

    Reblogged this on The Not So Big Society.

  6. Pingback: Cross-post/re-post: Sickness benefits, suspicion, and anxiety « Launchpad: By and for mental health service users

  7. I listening to the broadcast and was very impressed. I have MS and now earn less than a quarter of what I did before I was diagnosed, I will defy any medic to say its all in my mind. It surely is an indictment of this GP’s profession that their colleagues are actively colluding with our fraud. This is all about cost saving and scapegoating the sick and disabled whilst filling the coffers of the rich.

  8. Natalya Dell says:

    Thank you for this. I am a disabled person who works part-time (because full time is too much) and am lucky to have understanding and sympathetic GPs who recognise that remaining in work and keeping my sick leave down can sometimes be a real challenge.

    This week alone despite not being “unwell” I have been dealing with NHS/medical things for 3 separate impairments that I have. I’m sick of it already and my “medical/disability TODO” is significant. This takes time, energy and motivation away from the rest of my life and is very tiring to do.

    I have nearly lost jobs due to my disability related ill-health and get caught in the middle between HR and benefits/ATOS/DWP types who tell me I am an immoral and bad person and failure for having illnesses caused by my congenital impairments + attempts by medics to fix things and decent medics who are amazed I function as well as I do and struggle to understand that suspicious hateful assumed-scrounger mentality. I have to get the medics to explain every little point which is blindingly obvious to them in very small words of simplicity for people who are suspicious and deeply ignorant unable to see the bigger picture. My old GP gave an ATOS doc a run for his money and they backed down and I got the benefits I needed.

    If the good medics weren’t on my side supporting me, working with me to treat and prevent my illnesses I would be even more ill and stressed and scared of the real possibility of not managing to stay in work.

  9. River says:

    The very thought of the brown envelope cripples me with fear. I have just about got the right sort of financial support and PAs in place to have some sort of pathetic quality of life, it took 6 years to get here. I can not go
    through it all from scratch again. I would very genuinely rather be dead than deal with it.

  10. Pingback: What does it mean for sickness benefit claimants to live in a climate of suspicion? | British Politics and Policy at LSE

  11. Pingback: Sick and disabled braced for enforced work-for-benefits programme | Atos Victims Group News

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  13. Pingback: Todays Welfare News Round-Up, 20/10/2012

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