The impact of the Work Capability Assessment on mental health: claimants’ lived experiences and GP perspectives in low-income communities

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Lorraine Hansford University of Exeter, UK

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Felicity Thomas University of Exeter, UK

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Katrina Wyatt University of Exeter, UK

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This paper examines the impact of increased welfare conditionality on people with mental health issues claiming benefits in the UK. Drawing on data from the DeStress study, this paper explores the lived experience of welfare claimants in low-income communities, and the perspectives of GPs seeking to support them. Particular focus is placed on people’s experience of the Work Capability Assessment, the tool used to determine welfare claimants’ entitlement to sickness benefit, and how the narratives and culture surrounding welfare reform and the actual assessment itself can have a negative impact on mental health and wellbeing.

Abstract

This paper examines the impact of increased welfare conditionality on people with mental health issues claiming benefits in the UK. Drawing on data from the DeStress study, this paper explores the lived experience of welfare claimants in low-income communities, and the perspectives of GPs seeking to support them. Particular focus is placed on people’s experience of the Work Capability Assessment, the tool used to determine welfare claimants’ entitlement to sickness benefit, and how the narratives and culture surrounding welfare reform and the actual assessment itself can have a negative impact on mental health and wellbeing.

Context

The Work Capability Assessment (WCA) is used by the Department for Work and Pensions (DWP) to assess whether welfare claimants are entitled to sickness benefits in the UK. It was first introduced in 2008, when Employment and Support Allowance (ESA) replaced incapacity benefits, initially for new claimants only. From 2011 the DWP began a process of transferring remaining individuals claiming Incapacity Benefit or Income Support on the grounds of illness or disability to ESA. As claims for sickness benefits went up (partly in response to the economic downturn) the then coalition government overhauled the WCA and introduced a single welfare to work initiative, the Work Programme (DWP 2012), as part of a wider raft of reforms designed to ‘improve work incentives to all’ (HM Government 2010: 2). These reforms introduced the principle of conditionality to health-related benefits (Bambra and Smith 2010) and under this scheme ESA claimants were reassessed in terms of their ‘fitness to work’ using the new, more stringent, version of the WCA. The WCA also now determines what requirements with regards to preparing for work are placed on people with a health condition claiming Universal Credit.

The delivery of WCAs is outsourced to private sector organisations; initially ATOS and since 2015 Maximus, whose website states that the purpose of the WCA is to ‘help customers move forward with their lives’ (Health Assessment Advisory Service). The WCA is conducted by an assessor (a healthcare professional such as a nurse, occupational therapist or physiotherapist) who forwards their recommendation to the DWP to make a decision about entitlement. The three potential outcomes of WCAs include: being declared Fit for Work (no entitlement to ESA); being allocated to the Work-Related Activity Group (entitled to ESA and required to engage in activities to prepare for employment); or being allocated to the Support Group (entitled to ESA and not required to engage in work-related activities). It is important to recognise that the introduction of the WCA has taken place within a particular cultural and political climate. The WCA is one of a number of welfare reforms through which the UK government claims to ‘help break the cycle of benefit dependency’, and is part of a trend that views welfare as a cause of poverty rather than a response to it (Jensen and Tyler 2015). Workfare programmes frame unemployment as a failure by the individual to demonstrate the ‘correct’ psychological attributes (that is, aspiration, self-efficacy), excluding the possibility of structural or social causes (Friedli and Stern 2015). Against this context it is critical to examine the ways in which messages about responsibility implicit in the WCA, and the broader welfare to work ethos in which it is embedded, have an impact on a vulnerable population dealing with the combined stresses of poverty and mental health issues. The United Nations Special Rapporteur’s investigation on poverty and human rights in the UK reported that the UK welfare system’s shift to focusing on ‘getting people into employment at all costs’ is bringing ‘misery’, and that welfare reform policies ‘negatively impact many claimants’ mental health’ (Alston 2018: 5). This claim has been robustly denied by the government (Bulman 2018).

The WCA has weathered a decade of strong criticism. Indeed in the final report to parliament of five statutory independent reviews carried out from 2009 to 2014, the reviewer states that despite a number of amendments, the WCA system has been taken ‘about as far as it can sensibly go in terms of modification and adjustment’ and questions its ability to ‘best meet society’s needs’ (Litchfield 2014: 3). The 2018 Select Committee report on PIP and ESA assessments concluded that a ‘sizeable minority’ of claimants experience significant problems with the application process, and that a ‘deficit of confidence’ in the process adds to claimants’ distress (House of Commons Work and Pensions Committee 2018: 48).

The WCA’s lack of legitimacy in terms of accuracy in assessing ability to work, and its lack of effectiveness in terms of encouraging a return to work, has been widely recognised (Barr et al 2016; Marks et al, 2017; McNeill et al, 2017; Dwyer 2018; Geiger 2018). In 2016 the British Psychological Society issued a Briefing Paper that called for WCA reform and expressed concerns about the qualification of the assessors to make judgements about mental health and an ‘undue focus within assessments on physical conditions even when a mental health problem is the primary cause of incapacity’ (British Psychological Society 2016: 4). Questions about the suitability of the system to assess claimants with a mental health condition are of paramount importance. Data from May 2017 show that of the 2.36 million claimants of Employment and Support Allowance, 1.17 million (50%) were recorded as having a mental or behavioural disorder as their main disabling condition (DWP Stat-Xplore 2018). Taking co-morbidities into account, this rises to two-thirds of claimants (Litchfield 2014). Evidence is emerging of welfare reforms having a particularly adverse impact on those with mental health conditions, who are disproportionately more likely to have had their benefits sanctioned (Joint Public Issues Team 2015). A recent study showed that people with a psychiatric condition were twice as likely to have their existing Disability Living Allowance stopped in the transfer to PIP, compared to those with a physical condition (Pybus et al, 2019).

While the link between the WCA and worsening depression and anxiety levels has been reported in the media (Bulman and Polianskaya 2017; Ryan 2017), and statistics show that the rollout of the WCA has led to an increase in anti-depressant prescribing and suicide (Barr et al, 2016), other evidence of the impact of the WCA process on mental health has been limited, beyond anecdotal reports and surveys of doctors (Barr et al, 2016; Marks et al, 2017). Indeed one of the recommendations from the Select Committee Report on PIP and ESA assessments calls for the DWP to commission independent research on the impact of the application and assessment process on claimant health (House of Commons Work and Pensions Committee 2018: 48).

Using an extensive qualitative dataset involving over 100 participants from low-income communities and GPs working within these communities, this paper is therefore a timely exploration of how the WCA process, and the moral narratives surrounding its implementation, have an impact on the mental wellbeing of claimants.

Methodology

DeStress was a 2.5 year qualitative study exploring the ways that people in low-income communities perceive and respond to poverty-related mental distress, particularly in the current UK climate of austerity and welfare reform (Thomas et al, 2018). While a large proportion of mental health research is carried out in a clinical setting, DeStress engaged with low-income communities in two study sites in the South West to work with residents to explore lived experiences of poverty-related distress. The research was conducted using an engaged approach; residents made up half of the project’s advisory board and were involved in the research design and analysis, discussing and responding to findings to shape the research as it developed. Ethics permission was obtained from the NHS Cambridgeshire and Hertfordshire Research Ethics Committee.

The study involved 16 focus groups with a total of 97 participants, aged 18–65, from the two study sites (36 men and 61 women), with the gender ratio reflecting reported rates of common mental disorders in England (NHS Digital 2016). The two study sites represent the most deprived quintile of the overall Index of Multiple Deprivation 2015. Participants were recruited via community groups and settings, by word of mouth and advertising on posters and social media, and self-identified as living in households where poverty-related challenges such as unemployment, poor housing and low pay were experienced. Participants were asked about the main health issues and stresses faced by local residents, how people respond to those stresses and their impact on wellbeing. In addition, 80 interviews were undertaken with 57 residents (aged 18–65) who had experienced poverty-related distress (26 men, 31 women) to gain a more in-depth understanding of the source(s) of this distress, and their responses to it. Interviewees were recruited via the focus groups and word of mouth but also via GP surgeries to capture a broad range of views and experiences (including those who may be socially isolated). Clinical terms such as ‘depression’ or ‘anxiety’ were not used by researchers unless introduced by participants, with recruitment flyers, for example, seeking people experiencing ‘stress connected with issues like housing or money worries’. This enabled us to explore the medicalisation of poverty-related mental distress by paying attention to the ways in which people described and made sense of their own experiences. Similarly, in this paper we have used the various terms chosen by participants rather than clinical terms, to illustrate the challenge posed by our findings to a traditional model for the diagnosis and treatment of mental health.

In the majority of cases, people had sought medical support for their distress, although two had chosen not to. Participants who were engaged in the health system for their distress at the time of the study, and participants who wanted more time to discuss their experiences, were interviewed on two occasions, enabling us to capture any changes over time and understand the ongoing dynamic interaction between mental ill-health and welfare reform.

The interviews and focus groups generated a rich body of narrative data that gives prominence to the voices and experiences of people living in low-income communities. This data has been supplemented with interviews with General Practitioners (n=10) to understand the challenges they face supporting people experiencing poverty-related distress, as well as informal discussions with health, social care, housing and education service providers and community organisations.

Participants were not questioned specifically about their own or other’s experiences of claiming ESA or about WCAs, but were asked generally about economic, social and environmental causes of stress. When welfare benefits or low income were mentioned in relation to stress or low mood, this was explored further to understand any impact of recent welfare reforms on wellbeing. The benefits system was cited as a major cause of stress, in particular the impact of recent changes to welfare conditionality (as well as the transition to Universal Credit that some participants were making at the time of the interviews, but which is not specifically discussed in this paper). Work Capability Assessments were referred to by 22 of the 57 interview participants as a source of stress, and were discussed in seven of the 16 focus groups. In the examples cited, participants were referring to the process of claiming ESA where known, although some participants were themselves unclear about which processes related to which benefits, or were even unsure of which benefits they were currently in receipt. Although interviews primarily sought people who had experienced mental distress, many participants were experiencing a combination of both physical and mental health issues, with an often complex interplay between the physical, emotional and social factors impacting on their health and wellbeing.

Focus group and interview data were coded and analysed using QSR International’s NVivo 11 Software. This involved iterative thematic coding, including continuous comparison and using a grounded theory approach to identify relevant coding categories. Codes included ‘factors influencing wellbeing’ (with a sub-code of ‘income and employment’) and ‘moral narratives’ (with sub-codes including ‘job centres, benefits and housing agencies’ and ‘medical assessment for benefit’). Emerging themes and sub-themes related to experiences of the WCA and its impact on individuals are shown in Figure 1.

Figure 1:
Figure 1:

Mapping of key themes relating to experiences of the WCA and its impact on individual wellbeing

Citation: Journal of Poverty and Social Justice 27, 3; 10.1332/175982719X15637716050550

Field data was triangulated across sources of primary data, as well as through feedback with individual study participants, and regular meetings with residents participating on the project advisory board.

Findings

Participants discussed the social, material and environmental factors that contributed to their anxiety or low mood, with many talking specifically about their experiences of the benefits system as a cause of distress. Specific sources of stress varied between individuals, but some common themes emerged: concerns about assessors’ understanding of mental health conditions and the ability of ‘the system’ to assess their needs and capabilities; the contradictions evident between WCA judgements and advice given by other healthcare professionals; the stress of needing to present in a certain way in order to meet what were often considered to be irrelevant or unrepresentative criteria and the re-traumatising effects of the WCA interview. Each of these findings will be explored in more detail, with examples illustrating the ways in which these concerns affected mental health and wellbeing.

Assessors’ understanding of mental health conditions and the suitability of the assessment

Most interviewees had a range of physical and mental health conditions, and often expressed a concern that the WCA was particularly ill-suited to assessing the impact of mental health issues on their ability to work. Reflecting on their experiences of attending an assessment, participants commonly questioned the level of knowledge and understanding about mental health displayed by the assessors whom they had encountered. People reported that assessors often seemed to have a superficial knowledge of mental health conditions and appeared to make judgements based on seemingly crude expectations that claimants would present a standardised ‘tick box’ display of behaviours.

I said I had anxiety and they said, “Well if you had anxiety you’d be sitting there rocking.” [Female, aged 52]

The majority of participants felt that the assessment process was designed for people with physical conditions and was inappropriate in terms of assessing what someone with a mental health condition might reasonably be expected, or be able, to do. Often people felt that the assessors made assumptions or drew conclusions that were not accurate or realistic.

To me it felt like she was talking about somebody else’s life, because they said that I’m capable of talking to random people just to be polite, and I’m OK with being outside and stuff, which I panic before I even leave the house and it just gets really overwhelming, I can’t go outside without sweating or panicking. [Female, aged 19]

These views were echoed by some GPs talking about their patients’ experiences.

What I hear when people come back is, “Well it wasn’t about how I am and what I can do, it was about filling in a form, ticking to say I’ve done this, I’ve done that, I’ve done the other.” “Oh gosh, look, you haven’t got enough points, tough.” When I know that person is completely incapable of working and suddenly oh no, you can always massage a questionnaire to make it relevant. Can you walk, talk, eat and pick something off a table then you can work. Well you can’t if you are wracked with anxiety. But that’s what I see. [Female GP]

The methods used by assessors, that is, asking a series of questions to ascertain whether a claimant is capable of completing certain tasks, and observing their behaviour during the interview, were not felt by claimants, or by many GPs, to provide a reliable measure of the person’s ability to obtain and sustain employment. Both GPs and patients described the system’s inability to take into account the compounding effects of multi-morbidities, as well as the realistic demands of any work likely to be available to them. One focus group of military veterans discussed the despondency and frustration they felt as a result of being rejected by potential employers due to (often) compound mental and physical health issues, while simultaneously being forced by the benefits agency to continually provide evidence of seeking work.

But the job centre want you to get a job, they tell you that you can work. But then the employer’s saying that you can’t work because you’ve got this issue, so…where are you? [Male, aged 36]

Participants commonly talked about the fact that some health conditions, both mental as well as physical, varied in their intensity on a day to day basis, and that the ‘snapshot’ taken at the WCA did not take this into account. Interviewees reported assessors recording the tasks that they said that they could do on a ‘good day’ and not taking into account that this was unusual, or may have consequences for their health on subsequent days.

A number of people talked about the stigma and shame that they perceived to be associated with mental distress and the difficulty they experienced in disclosing to a stranger, particularly one who was not knowledgeable about mental health conditions, the extent to which they were sometimes incapacitated.

Conflicts between WCA decisions and the advice of other healthcare professionals

Many of the participants interviewed experienced a contradiction between the decision about their capability to work by the DWP and the advice that they had been given by their GP or another health professional. In one example an interviewee suffering from a number of both mental and physical health conditions explained how his chronic pain and subsequent inability to work contributed to his depression. Both his psychiatrist and his GP had suggested that his reluctance to accept that he was unable to work may be adversely affecting his physical and mental health.

I’ve had it from the doctors. You’re not accepting you can’t do certain jobs. I know that! I won’t accept it, I can’t accept it because I’ve always worked, since I was young. [Male, aged 56]

However, his claim for Disability Living Allowance had been rejected, and while claiming ESA he had been moved between the Support Group and the Work-related Activity Group several times. He was therefore faced with a situation in which his GP had classed him as not fit for work, and his psychiatrist had advised him that to improve his mental health he needed to accept that he could not work, yet the welfare system required him to demonstrate that he was preparing for employment.

GPs confirmed that it was an increasingly common occurrence for WCA decisions to contradict their medical opinions about their patients, and that the lengthy process and stress involved in challenging these decisions often contributed to ill health.

Our decisions are overruled by the ATOS people…They’ll say, “No, no, no, your patient is fit to work,” and that’s where they appeal, the patient appeals, the patient then wants a letter from you. It all takes so long. So actually the thing is the patient’s condition usually has deteriorated and the stress of the process makes them physically and mentally worse…quite often they pass their appeal at the second or third time. So it is distressing to have to watch these people suffer. [Female GP]

I’ve never done this before this year but now I find myself having to wade in to prevent patients being interviewed in whichever location it is and having their benefits stopped and I’m having to do that because the people [WCA assessors] don’t believe them now. If I write a sick note saying this person is unwell, not fit for work, that should be enough. I shouldn’t have to write a letter saying, “Please don’t threaten this very vulnerable person with this action because all you do is you make their illness worse and you prolong it.” And that’s almost a standard letter I could write…I could send that out every week. [Male GP]

GPs reported seeing a growing number of patients presenting in a state of mental distress who had previously been managing their conditions while claiming welfare but whose health had recently been destabilised by new benefits processes.

Needing support to comply with the process

As the WCA has become a more common experience, it was evident from interviews, focus groups and discussions with representatives from key support agencies that there is a growing awareness of the need for ‘expert’ help in order for claimants to represent themselves accurately at an assessment. People with mental (and often complex additional physical) health issues reported needing support to negotiate public transport and attend an unfamiliar venue (particularly for those experiencing anxiety), to understand the language used on forms and in interviews, to talk to a stranger about personal circumstances, and to accurately articulate their own situations and needs. A number of people reported receiving support from, for example, a mental health support worker, care coordinator or advice agency as they were unable to go through the assessment process independently.

From the narratives provided during our research, it was common for claimants to explain that they had ‘naively’ attended their first WCA without support, believing that the assessors were there to help them, only to find that they ‘failed’ because they had not been prepared for the questions they would be asked or were not aware of the ways that their answers might be interpreted. For some people with mental health difficulties such as anxiety and depression, accessing support to help with their claim just added an additional obstacle and caused further stress. One person reported leaving an advice agency before getting support, after a two-hour wait in which she felt she was being judged for the noise being made by her toddler. One young person described how she felt unable to ask her GP for evidence to support her claim, although she knew it could be helpful, due to her lack of confidence and low self-esteem, which were themselves exacerbated by the process.

It could always like help if, you know they actually phoned the GP or something to kind of get a rough idea of what I’m like or even just a letter…’cos I don’t know if I could walk in with “can I get a letter from my GP”, ’cos me myself, I can’t ask for something like that. Because I felt bad just asking for a sick note, I felt like there’s people worse than me, but then some days I’m thinking but I’m not capable either…after the assessment it was just, I felt kind of a very low priority. [Female, aged 19]

Paradoxically, getting help to enable them to attend their assessment had, for some people, disadvantaged them. One interviewee had a long history of psychiatric and addiction issues and had moved between various supported and temporary accommodation. He recounted how his assessor had made false assumptions about his abilities after he had been supported to attend an interview by a volunteer counsellor.

To completely disregard mental health is bang out of order. They wrote down loads of lies. I don’t know whether they’re intentional or not. Saying that I turned up on my own and that. That I had no problems dealing with them cancelling at short notice and me getting there. Well, I had to, or I would have lost my accommodation, lost my benefits. I didn’t know where to go, my counsellor drove me out there. [Male, aged 35]

Although Maximus’s website states that claimants are welcome to bring a companion with them to the assessment, this seemingly supportive option appears to have been a double-edged sword for some people, with unforeseen consequences. In another example an interviewee described how she had carefully prepared and supported her husband, who has depression and multiple other health issues, to attend the interview, only to find that this backfired as, based on this ‘snapshot’, her husband was assessed as fit for work.

But the thing is these people who make these decisions, don’t know the day-to-day things, what it is actually like on a day-to-day basis. At the last meeting, it was my own fault, I spent weeks buoying him up, getting him to a really really good place where he would interact with the people. Ordinarily, he won’t. I got him to a good place where he would. Excuse the language, it came back and bit us in the butt. Even the people at the jobcentre have turned round…and said, “Don’t, don’t tell them, don’t get him in a good place, let him go on a bad day,” because even they’ve said he’s not fit for work. That’s just on a ten-minute acquaintance, they’ve looked at him and said, “He isn’t fit for work.” [Female, aged 50]

Many respondents reported feeling that they were in an unwinnable situation – on the one hand, failure to attend or comply with an assessment would result in their benefit being removed – on the other, their attendance and compliance with proscribed behavioural rules would be a sign that they were capable of working.

I took loads, all the information, from the people that have seen me having episodes, the counsellor included, and at least what it’s going to take for me to get ready for work. Because I turned up, because I’m quite polite and I can talk to them, I fail. It said on the wall ‘Any violent behaviour or trouble, you’ll be asked to leave’. So it’s kind of like you’re in a trap where you’ve got to be nice, you’ve got to be respectful and you’ve got to talk, even though you feel like you just need to leave. You can’t be rude because you’d get your benefits stopped. You can’t not turn up because you’d get your benefits stopped and you’d lose your accommodation, but the minute you turn up, you’re fit and well because you’ve come. [Male, aged 35]

Re-traumatisation, shame and alienation from support

For some people, acknowledging the extent of their distress was in itself a frightening prospect which they knew would force them to abandon the protective measures they normally adopted.

It’s like, the worst thing for me to do myself is to write down and be honest about how mentally messed up I am, because I go through it on a day to day basis but saying it out aloud it sounds really petty, but it’s really hard to put into words what it feels like when you’re panicking or what it feels like when you can’t cope in a certain situation. And I don’t like it when people feel sorry for me, because, I don’t know, I’d like people to think that you know I’m a strong person, I can cope with these things when I know that I can’t and it’s just hard for me to admit that I’m as bad as what, you know, I feel. It’s like some days I just kind of want to switch off and not think about it and not feel it for a little bit, but there’s kind of no getting away from it recently. [Female, aged 19]

My favourite saying is ‘I’m alright’. I was doing that when I was lying on the floor in my bedroom house with the shit piled around me going yeah I’m alright, yeah. Which doesn’t help with a tribunal. How does it affect you? Yeah, I’m alright, yeah. [Male, aged 56]

This left them therefore with a dilemma about whether to fully expose and articulate the extent to which their mental health incapacitated them to protect their entitlement to welfare support, knowing that this was likely to worsen their mental state, or whether to protect their sense of privacy and self-esteem but risk their entitlement. In many instances, this dilemma was in itself a source of stress.

For many participants it was not only the experience of the appointment itself that exacerbated their mental health issues, but the stress that they felt for the period of time leading up to and after it. For one interviewee, a fear that she would be moved from the Support Group to the Work-Related Activity Group and would not be able to cope with either the financial or emotional consequences of this led to near suicidal thoughts.

And it terrifies me…you have to go to the appointment, and you’re waiting in a room with other people, and your tension is getting worse and worse and worse. I take crochet with me everywhere I go because I can focus on that, stop the thoughts, stop the shaking, stop the panic attacks, stop the flop sweats, the heart racing, stop everything. And you’re in a room, you’re talking for half an hour to a complete stranger who doesn’t know who the f*** you are, hasn’t got a clue as to whether or not you’re on a good day or a bad day, doesn’t…[long pause]…[sighs]…The whole time you’re doing that process, the whole time you’re waiting for that, in my case I was disappointed that I woke up each morning.

The interviewee was advised by her long-term mental health support worker that her usual self-protective mode of trying to ‘hide everything if I’m feeling bad’ might not be wise. As a result, she made a decision to stop taking her medication in the days leading up to appointment, despite knowing the harm it would cause her.

I was told not to do that, not to cover anything up, to be as I normally was. So do you know what I did? I didn’t take my meds for two days. Let the emotion out. Because my meds basically numb me sufficiently so that I can manage or they bring me up to a level where I can manage…I couldn’t manage lots of stuff, but I can talk…so I thought no I’m going there. So instead of coming across as this unemotional [sighs] whatever. So I know that if I don’t take them for two days I’ll cry at the drop of a hat.

An awareness of the cultural discourse surrounding welfare claimants that exists within popular media was also a contributing factor to her feelings of despair.

So, the constant thought that’s going through your head is, well, you’re not worth anything anyway so of course they’re going to make you do this and they’re going to say you’re skiving or whatever, scrounging. All these TV programmes at the moment, I can’t watch them. I can’t even have the channel on that they’re on because I can’t bear it. Because they’re being judged, and are people seeing me through the same eyes as…? It’s almost like people are being conditioned to seeing people on benefits in that way. [Female, aged 50]

One interviewee recalled that despite being accompanied by her support worker to her assessment, the stress of the situation led to her self-harming ten minutes before the interview. Another participant with a history of addiction described how the high levels of stress that he felt leading up to a WCA resulted in several suicide attempts.

  1. Q:So when you said you had the breakdown last year, what kind of led up to that? Were there any particular pressures?
  2. S:It was just a lot of things combined. I was just waiting to have a medical with me, y’know, for my ESA, and I hate them. I really, really hate them, and it proper stresses you out because you think you’re going to get the money stopped. And they do a lot of times, so you think you’re going to get your money stopped and then you’ve got to go on JSA and…It’s so difficult to go on JSA. How do you go on JSA when you’ve got a methadone script? No one’s going to employ you. Well they’re not, are they? Yeah, the first time I tried to top myself. I was in [hostel] for a couple of weeks before I was here. As I say, I tried to top myself. I overdosed three times in two weeks.
  3. Q:Really? What, because you knew you had the assessment coming up?
  4. S:Because I couldn’t handle, yeah, the thought of the assessment. I’d cancelled two of them, and that’s why I knew I had to go to this one. And I just couldn’t get my head round going to it. [Male, aged 45]
Participants’ narratives emphasised not only their anxieties around attending a WCA appointment but also their concerns around the content of the discussion within it. One interviewee reported being asked to recount previous suicide attempts and explain why they didn’t succeed, as well as to describe her current thoughts about suicide. While she understood the need to assess her mental state, she found being asked about such a sensitive subject by a person with whom she had no relationship of trust, in a non-therapeutic setting and with no support, extremely distressing. Another participant described how she was affected by being asked to discuss her history of sexual abuse.

He was asking me really personal stuff and I got really stressed and upset and I said, “What the f*** am I doing in here? I don’t want to be here.” I just went on one. And it made me feel really on edge, really nervous and I felt like I had been stripped [of my] dignity, because this was a male asking me these questions…It’s like he was taking bit by bit off me, asking me about…because I was sexually abused. Yes. I was having therapy for that but he was asking me stuff like that. I said, “Is this necessary? Is this really necessary?” He said, “Well yes, because of your depression.” I said, “I’m clinically depressed. That doesn’t help what happened to me but is that necessary to ask me questions like that?” “Yes.” [Female, aged 52]

It was common for interviewees to talk about feeling degraded by the WCA, with participants frequently using words such as ‘humiliated’ or ‘belittled’ to describe how the assessment made them feel. GPs echoed these views, with one stating that for some people with a history of traumatic experiences, illness or injury the process of being forced to discuss very personal topics in an environment lacking compassion is in itself re-traumatising.

This GP, who worked with particularly vulnerable population groups, described how the process can impact detrimentally on wellbeing and can counteract the health and social care being provided by medical and other professionals. In the following example she describes how the threat of the assessment derailed an individual’s recovery from addiction issues.

There’s one patient who I was looking after who was both alcoholic and heroin addicted, managed to get him stable on methadone and he was detoxing off his alcohol and actually I think he’d successfully detoxed off his alcohol but there was this looming medical assessment coming up and he was really worried that they would tell him that he was now fit for work, very recently off heroin, just off the alcohol. So they could say, “Well you are not on heroin anymore, you are not drinking, so back to work,” but he was so not ready for work. The problem is I kept trying to reassure him and saying, “I’ll write letters for you.” His drugs worker wrote a letter for him. One day he just disappeared and what had happened was he just made himself street homeless again, started drinking again because of this impending medical. So all that hard work that had been put in by him and all the other workers just went whoosh and that was, as far as I could see and as far as he told me, directly because of this impending medical assessment. And that’s not the first time that I’ve heard that. [Female GP]

In another example a young person living in temporary accommodation with depression and anxiety issues and with no family support explained that she had stopped attending regular appointments with her GP since her assessment, because being declared fit for work by the WCA made her feel that her mental health needs had been belittled and that there was ‘no point’ seeking help.

Discussion

Findings from the DeStress study provide evidence to support assertions from mental health practitioners and charities (for example, Mind 2015) regarding the inappropriate nature of the WCA process for people experiencing mental health issues. The findings presented here also demonstrate how the WCA process can itself operate as a contributory factor towards worsening depression and anxiety, self-harm and even suicidal thoughts and actions. The narrative accounts add depth and understanding to Barr et al’s (2016) longitudinal study showing an increase in suicide rates, anti-depressant prescribing and self-reported mental health problems in areas where a greater proportion of the population were exposed to the reassessment process. By delving more deeply into lived experience, the DeStress findings also provide important insight into the mechanisms through which the WCA causes mental distress.

Non-validation

The lack of expertise in mental health demonstrated by some assessors resulted in the disabling effects of claimant’s conditions sometimes not being recognised as significant, or being belittled; a process which they found disempowering and distressing. Narrative accounts also illustrated the frustration and even desperation that resulted when WCA decisions contradicted medical advice regarding their condition and ability to work that claimants had been given by other health professionals.

The lack of understanding around mental health by assessors is likely to become an increasingly pertinent issue with the continued rollout of Universal Credit in the UK, given that the WCA is now used to determine what requirements will be placed on claimants in terms of preparing for work. Welfare rights experts have highlighted that under new Universal Credit regulations provisions for ‘safeguarding’ people with mental health issues are much more limited, and jobcentre work coaches have greater discretion in terms of administering ‘personalised conditionality’ (Batty 2017). A limited understanding of mental health among both assessors and jobcentre staff working with those required to provide evidence of preparing for employment is therefore likely to increase the vulnerability and distress of claimants with mental health issues.

Re-traumatisation

DeStress findings demonstrate how the requirement to comply with a welfare assessment that effectively forces claimants to discuss personal and sometimes traumatic experiences with assessors who may have little knowledge or understanding of mental health, and with whom they had no therapeutic or clinical relationship, but yet whose judgement would potentially have major implications for them, resulted in distress and sometimes even re-traumatisation. For some people this had a significant and destabilising effect on their mental health.

Powerlessness

The fact that the WCA is a mechanistic assessment which only takes into account an individual’s ability on that day to perform certain tasks, rather than an holistic assessment of an individuals’ ability to sustain employment in a ‘real world’ context, was another aspect of the WCA which left claimants feeling powerless to make realistic choices about their lives. Assessments did not take into account variations in symptoms, the impact on health of performing certain activities, or wider concerns such as the practical viability of any employment that may realistically be available, or people’s caring responsibilities. Some claimants talked about the disparity between the expectations of the benefits system and the realities of their lives inducing feelings of hopelessness; a psychological construct closely associated with depression and suicidal ideation (Kuo et al, 2004).

Rhetorics of responsibility

The WCA is part of a raft of welfare reforms introduced by a government who described the receipt of benefits as a ‘lifestyle choice’ (Shipman 2013). Emerging strongly from interviews and focus groups was an awareness of a wider discourse in which those who are unable to work are no longer viewed as in need, but as ‘scroungers’ who are a burden on the state. Whether assessed as fit for work or not, evident within people’s narratives was the effects of this discourse, which prioritises capacity for paid employment above other considerations of wellbeing.

While claimants subjected to a WCA certainly experienced stress related to financial hardship and fear of it being made worse, their distress was compounded by this stigma, illustrating how a cultural and political economy of ‘welfare disgust’ (Jensen and Tyler 2015) has an impact on mental health. Participants talked about feelings of embarrassment, shame and worthlessness, and a desire to disassociate themselves from negative media portrayals of benefits claimants.

Shame and alienation

These findings echo those of Walker (2014), who argues that shame is one of the major effects of poverty. Findings from our study show that for those who may already be experiencing the stigma of both welfare dependency and mental health issues, being subjected to an assessment process which effectively belittles many of the psychological conditions affecting their capacity to work compounds their sense of shame; a process described by one GP interviewed as ‘cruel’.

Shame is recognised by psychologists as the most invidious social emotion, causing people to retreat socially and avoid situations in which they might be shamed (Walker 2014: 40). Dolezal and Lyons make the case for shame to be considered a determinant of health, stating that ‘avoiding potential instances of acute shame can feel like a life-saving measure, even when it puts one’s health or life at risk’ (2017: 259). The DeStress study found many examples from patients and GPs of the WCA process inducing feelings of hopelessness and shame which led, for some people, to alienation from healthcare services (for example, visiting their GP), giving up their contact with support services leading to homelessness, disrupting recovery from addiction or not feeling deserving of healthcare or welfare support.

For some, an awareness of what the WCA process entails and of the fragility of their mental health left them unwilling or unable to engage with elements of the welfare system. Our data included examples of individuals who had decided not to appeal WCA decisions and/or apply for further benefits (in some cases which they had been advised they would be entitled to) because of a fear, often based on previous experience, of the impact on their mental health.

Interestingly government figures for the quarter ending September 2018 show that 65 per cent of WCA appeals result in a ‘Fit for Work’ decision being overturned, a figure that has been roughly consistent since the WCA was introduced (DWP 2019). There has, however, been a significant drop in the number of appeals since 2013, when ‘mandatory reconsideration’ was introduced as an additional stage before an appeal was possible, creating another barrier to the appeals process (Geiger 2016). Our data would therefore seem to suggest that the drop in appeals may also be related to the damaging psychological effects of the system on those with mental health conditions. Overwhelming evidence from this study suggests that a system purportedly designed to ‘help people move on with their lives’ actually perpetuates structural and emotional drivers of mental ill health creating a negative cycle of mental ill health and poverty.

Wider implications

In addition to the adverse health and wellbeing impacts described here, the WCA process also has wider implications for an NHS primary care system already under stress.

A recent BMJ survey found that 91 per cent of GPs felt that their workload had increased due to ESA, for example providing medical information for WCAs and helping an increasing number of patients to appeal against the removal of their benefits. More than half of the GPs felt that their professional opinion was regularly disregarded by assessors, and 68 per cent said that they had seen evidence of their patients’ health being harmed by reductions to their benefits (Iacobucci 2014).

Most GPs interviewed for DeStress felt that in order to protect the health of their patients, they were increasingly forced to engage with what they perceived to be an uncompassionate welfare system in which they had little confidence, with some GPs feeling overwhelmed by a situation in which they felt they had little power to effect change. Many felt that this should not be their role as medical professionals.

Conclusion

By examining the moral narratives surrounding welfare reform as well as the social and psychological effects of changes to assessments, the DeStress study has drawn out evidence of the myriad ways in which the current WCA system is damaging mental health and pushing people into further hardship. Implicit in the stated aim of the Health Assessment Advisory Service to ‘help customers move forward with their lives’ is a suggestion that those claiming sickness benefits need somehow to change their situation. However, as a system that merely assesses capability, rather than one which identifies barriers to employment and the support needed to address these barriers, it is hard to understand how it can support wellbeing and a bettering of people’s lives.

Since Litchfield’s independent review in 2014 concluded that the WCA had already been ‘taken as far as it can go’ (2014: 3), calls for reform have been gathering pace. In February 2018 a former Conservative minister at the DWP, Baroness Altmann, stated that ‘the extent of the appeals clearly indicates that something is seriously wrong with the system’ (Hartley-Parkinson 2018).

The UK government’s dogged persistence in enforcing a WCA system that is not only failing to deliver its stated aims but inflicting harm, would appear to support the United Nations Special Rapporteur’s statement that UK welfare reforms are part of a political principle which asserts that people should ‘work at all costs’, rather than a necessary measure of austerity (Alston 2018). Accounts of the lived experience of people with mental health issues trying to claim welfare support strongly suggest a need to question the fundamental ethics of the WCA system, with an urgent need for review on humanitarian as well as practical, medical and economic grounds.

Acknowledgements

The authors would like to acknowledge the contribution of the DeStress research team, the Advisory Board, our community partners and the people who participated in the research.

Funding

The DeStress Project was funded by the Economic and Social Research Council under Grant ES/N018281/1.

Data availability statement

Anonymised focus group and interview transcripts from participants who consented to data sharing, plus additional supporting information, are available from the UK Data Service, subject to registration and permission. Details of how to request access are available from the UK Data Service at: http://doi.org/10.5255/UKDA-SN-853788

Conflict of interest

The authors declare that there is no conflict of interest.

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  • Figure 1:

    Mapping of key themes relating to experiences of the WCA and its impact on individual wellbeing

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    • Export Citation
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    • Search Google Scholar
    • Export Citation
  • Kuo, W.-H., Gallo, J.J. and Eaton, W.W. (2004) Hopelessness, depression, substance disorder, and suicidality, Social Psychiatry and Psychiatric Epidemiology, 39(6): 497501. doi: 10.1007/s00127-004-0775-z

    • Search Google Scholar
    • Export Citation
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    • Search Google Scholar
    • Export Citation
  • McNeill, J., Scullion, L., Jones, K. and Stewart, A. (2017) Welfare conditionality and disabled people in the UK: claimants’ perspectives, Journal of Poverty and Social Justice, 25(2): 17780. doi: 10.1332/175982717X14943392083755

    • Search Google Scholar
    • Export Citation
  • Mind (2015) Nearly 20,000 people call for overhaul of fit for work test, www.mind.org.uk/news-campaigns/news/nearly-20-000-people-call-for-overhaul-of-fit-for-work-test/#.XBzCA027KUk

    • Search Google Scholar
    • Export Citation
  • NHS Digital (2016) Adult psychiatric morbidity survey: Survey of mental health and wellbeing, England, 2014, https://digital.nhs.uk/data-and-information/publications/statistical/adult-psychiatric-morbidity-survey/adult-psychiatric-morbidity-survey-survey-of-mental-health-and-wellbeing-england-2014

    • Search Google Scholar
    • Export Citation
  • Pybus, K., Pickett, K., Prady, S., Lloyd, C. and Wilkinson, R. (2019) Discrediting experiences: outcomes of eligibility assessments for claimants with psychiatric compared with non-psychiatric conditions transferring to personal independence payments in England, BJPsych Open, 5(2): p. e19. doi: 10.1192/bjo.2019.3

    • Search Google Scholar
    • Export Citation
  • Ryan, F. (2017) Pushing people to the brink of suicide: the reality of benefit assessments, Guardian. https://www.theguardian.com/commentisfree/2017/may/04/benefits-assessments-damaging-lives-hardworking-britain. Published 4 May 2017, Accessed 1 February 2019.

    • Search Google Scholar
    • Export Citation
  • Shipman, T. (2013) No hiding place for those who opt for a life on benefits, says Duncan Smith, Daily Mail. https://www.dailymail.co.uk/news/article-2529714/Duncan-Smith-No-hiding-place-opt-life-benefits.html. Published 27 December 2013, Accessed 1 February 2019.

    • Search Google Scholar
    • Export Citation
  • Thomas, F., Hansford, L., Ford, J., Wyatt, K., McCabe, R. and Byng, R. (2018) Moral narratives and mental health: rethinking understandings of distress and healthcare support in contexts of austerity and welfare reform, Palgrave Communications, 4(1): 39. doi: 10.1057/s41599-018-0091-y

    • Search Google Scholar
    • Export Citation
  • Walker, R. (2014) The shame of poverty, Oxford: Oxford University Press.

Lorraine Hansford University of Exeter, UK

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