The Sample

We interviewed 17 service users. Seven of the participants were male and ten female. There was a wide age-range, with younger participants in their early thirties and older ones nearing retirement age. Ten were white British, one was Black British, one of Black Caribbean origin, two of South Asian origin and one Polish. Two people provided no details about ethnicity. Mental illness diagnoses included schizophrenia, anxiety, depression, bi-polar disorder, paranoia, or a diagnostic combination. Seven of them also experienced physical problems affecting their mobility or ability to work for long hours. The benefits involved were the basic disability benefit—either ESA or its predecessor, Incapacity Benefit. In addition, people discussed the removal of other benefits such as the Disability Living Allowance (DLA), Housing Benefit and Income Support. Ten of the participants contacted the advice service for help to reinstate a benefit that had been stopped or reduced in value following reassessment. Four other cases involved appeal against a decision to deny a new benefit for which the participant had applied following a deterioration in their mental health. In one case, the appeal was made not against a reduction in benefit but against a requirement to take part in a work-related scheme. In the remaining two cases, in addition to removing existing benefits the authorities also demanded that the participants repay large sums of money.

The sums of money that were removed, reduced or demanded from the participants ranged from about £100 a month to about £100 a week. In some cases, this meant an increased rent contribution from the participant, as their Housing Benefit entitlement was reduced. With help from the benefits service advisors, all participants were eventually successful in their appeals. For most participants the process of submitting applications, taking part in assessments and making a succession of appeals was lengthy and might last more than a year. In 10 cases, the participants had to make more than one appeal before the initial decision could be overturned. At the time of the interviews, one participant had recently started working again in a part-time job after his physical condition improved; two did some voluntary work, but the others were not working.

The Impact of Being Subject to Denial or Reduction of Benefit

The Impact of the Reduction of Income

For all participants whose benefits had been stopped or reduced this was a momentous and stressful event, with a range of consequences in terms of its impact on everyday life. Three participants lived with other family members who made some contribution to their income and thus shared the burden of reduction. For two participants, the period in which they waited for the appeal to be determined was relatively short and so the impact of the reduction was small. As noted above, one participant appealed not against a reduction in income but against a requirement to take part in work-related activity.

For the other participants, the impact of the financial reduction was much harder to bear. One of the participants, Hilary,Footnote 1 was notified about stopping the payment just two weeks before Christmas. As she had neither savings nor any other income, she had to ask her friends for money to buy food:

They stopped paying my rent and don’t give me anything to eat during the Christmas. I didn’t get anything; people had to give me handout. […]I didn’t have anything. It’s people hand out to me. If people didn’t hand out for me, I wouldn’t have anything to eat. And I have to eat to take the medication.

Two other participants had realistic fears that they would have to leave their accommodation and be turned out onto the street because of the reduction. They were certain that they were able to stay in their houses only because of prompt intervention by the welfare benefit advisers. Another participant had savings but was forced to draw on them until they ran out, neither knowing whether the appeal would take place before the savings ran out nor knowing what to do if the appeal should fail. Brian, another participant, had to take extreme measures in order to survive on very little money:

If you can’t eat three meals a day, you’d have one meal a day and it’s not good for your health. There’s certainly no chance of socialising, absolutely no chance.

Brian further explained that even with the benefits, he was not able to live any kind of luxurious life but just to tried survive. With the cutting of benefits this task became harder:

When you’re already living on a small amount, you’ve already constrained yourself in a way someone who has an average or above average income wouldn’t understand. So it kind of takes you down to another level where you’ve just got to keep reducing yourself as much as you can and then in the end, if you keep reducing down, people are cutting back on things which are important for their health. Food and nutrition and exercise.

After her ESA claim was rejected, Rita had to ask her mother to draw on the small amount of money that her recently deceased grandmother had left to them. The money allowed her to buy food, but only until the appeal was heard.

The worries about the money and the need to ask friends for help was extremely stressful for these participants. They used terms such as ‘shocked’ ‘distraught’, ‘distressed’, ‘angry’, ‘devastated’, ‘struggled badly’, ‘nerve-racking’, and ‘suffering’ to describe their reaction to the loss of income or to their worries about its consequences. Two people reported that they had to ask friends for money or that the fear of being made homeless led them to think of suicide. Keith, who had to deal at the same time with the benefit reduction and a considerable rise in his rent explained:

Since I had my own place and it being threatened to being taken away from me it just made me more ill. I lost about 3 stone in weight, I was really, really ill down to the worry of not being able to meet the bills, not being able to eat properly.

The Stress Involved in Being Trapped in Cycle of Assessments, Rejections and Appeals

Loss of income, or the prospect of that loss, was not the only source of stress caused by the assessment process. Most participants reported how they struggled to cope with all the bureaucracy involved in what they described as an endless cycle of assessment, rejection and appeal. Most had made two or three appeals relating to the same benefit request, and by the time they won the last appeal most of them had only weeks or months or, at best, a year left, before they had to begin the same process all over again. One participant had completed three full cycles of assessment, rejection and appeal by the time of the interview, while others had completed two or were in the middle of the second cycle.

One of the reasons that this bureaucracy created so much stress was the time and effort people required to complete all the paperwork and their lack of skills for doing it. One participant remarked that it took him about a week to complete a single form. Others said they did not open official post because they were too anxious so they asked someone else to open it for them. Some participants noted that the questions were misleadingly worded and that, following past experience where their answers were distorted or assigned a different meaning from what they had intended, the task of answering the questions was particularly challenging. As Ron said, ‘It’s the way they word the questions. I don’t know what they are looking for, but they obviously know what they are looking for’. All participants, without exception, insisted that because of the stress involved and because the procedures were not suited to assess the eligibility of people with mental illness, they could not and would not pursue the proceedings without the help of the advice service.

A particular source of stress was the requirement to appear in person before some of the assessment panels or appeal tribunals. Some participants found the experience daunting. Rozlyn recalled how she became so anxious in one of the medical assessments that ‘I couldn’t speak, I was crying, I was hysterical’, and she ‘almost called an ambulance’. Margaret recounted how the very formal nature of one of the appeal hearings that she attended, the inquisitorial nature of the process, and the unsympathetic judge, all made the process ‘very scary and intimidating’. Rita’s stress caused by having to appear in front of the tribunal was caused by her anger of feeling she is treated as a liar (see further below) and the stress involved in talking about and re-living traumatic experiences in her life especially as she felt panel members were indifferent and did not care:

You are sitting there talking to them and you can see they are not listening to you. Hello, I am talking to you about something that is really intimate about me. And they are like zombies and then tick that box because they get commission or something for getting people off it so there you go, they are thinking about lining their pockets aren’t they? Which makes me angry.

Margaret explained:

I was sick with worry. I was really, really bad that time because I just thought I can’t go through this again. It was just no, not again, I’ve already been through it twice. I had also DLA. I went through and failed DLA, so I had recently been through DLA appeal and then a month later I got called for an ESA appeal.

Beth told how the cycles of bureaucracy affected her attempts of recovery:

It is like them picking at a scab. There are times actually in my life since I’ve got here and I’ve thought, Yeah, I am actually getting somewhere, I have made it to the local shop on my own. I’ve made these steps on my own, sometimes I just think just leave me alone so I can get better, so I can help myself. But then they’ll come along and they’ll pick and say you’ve gotta come to this or you’ve got to come to that, you’ve got to be here or we’re stopping your money. And you are just like oh my god, and then I just go in my kitchen and sit on the floor and sob. You might have took 5 baby steps but it throw you 10 back. Interviewer: Why? Because it causes so much stress and anxiety that it will just not leave your mind. You’ve got to do this, you’ve got to go to this thing, you’ve got to see these people. Before you go there [the medical assessment panel] it’s a fear.

The Invisibility of the Disability and the Anger About Being Mistrusted

Some of the participants were offended by, or felt angry about, the messages implied in the rejection of their claim, as if they were not telling the truth or were applying for money to which they were not entitled. Related to this was the frustration experienced by other participants, who struggled to find ways to prove or demonstrate why they were unable to work, given that their disability was not physical and therefore not always visible. The view among many participants was that the assessment procedure was more suitable to assess physical disability than it was to assess mental health. Two participants said that the frustration about the invisibility of their disability led them to wonder if they should make an effort to appear more like the negative stereotype of someone with mental illness in terms of self-presentation, in order to convince the committee that their case was genuine. Even the thought of having to appear less presentable in order to convince the committee was upsetting and frustrating.

Deborah reported how a member of the panel assessing her eligibility suspected she was lying to them. Specifically this doctor suggested she did not need a walking stick, that she wasn’t using it properly and that she was not left handed as she appeared to be. She found this suggestion highly offensive:

I mean, please, I know whether I am left-handed or not. I was born in an era whereby you weren’t allowed to be left-handed, so I write with my right hand because I had to sit on my left hand. But certain things I cannot do with my right hand.

The fact that they were mistrusted was particularly painful for participants who had previously lived through a period when people close to them did not believe them or accused them of lying. This made the feeling of being mistrusted by the authorities even more traumatic. Rita explained:

My doctor called me a liar, my sister, my mum called me a liar. So you are writing down this form and they have read that form but why are they saying no, you must come to an assessment, we don’t believe you. It’s like saying we don’t believe you, you are calling me a liar. That’s what I’ve been called by kids at school, you know don’t call me a liar, I am not a liar, why would I lie? So that is what is hard, straight away people sit there judging you and why are you judging me? Don’t call me a liar, this is difficult enough without that.

Ashley talked about how stressed he felt because of the process ‘almost makes you feel guilty for being disabled’. Margaret described how she was frustrated by the formal and alienating nature of the process and the predisposed disregarding and non-believing attitude towards the individual applicant:

‘I am not a number, I am an individual, I am a person. You feel as though when you’ve been dealt with that you’re just another person…a number. You never feel as though they are on your side, that’s what it is. When they are reading [the forms completed by the applicant] you are not sure they are really taking in what you are saying and it’s only when you’ve got an organisation or a mental health team on your side that they will listen to what you have to say.’

As in other studies (Corden and Nice 2006), even though they were not asked about it, eight of the participants explicitly accepted the assertion that some people are trying to cheat the system by submitting false claims and pretending to be disabled even though they are not. These participants perceived the wish of the government to try and stop fraudulent application as legitimate and were aware of the challenges involved in doing so. However, they did not think this aim justified treating all the people who receive benefits as suspects. In addition, and again, without being asked about it, some of the participants stressed how much they would have liked to be able to work, and argued that those who believed they would rather receive benefits than go to work did not understand people with mental illness. People who had previously been in employment emphasised the drastic reduction in income and, as a result, the corresponding reduction in their quality of life when coming to live on benefits. This point was made in order to affirm that they would never have chosen to live on benefits if they could go to work. Others also stressed both the self-stigma and stigmatising attitudes towards them as further reasons why they would have preferred to work if only they could. Margaret said she was ashamed that she was receiving benefits and felt like a ‘benefit scrounger’, but given her anxiety she was unable to leave the house or get on a bus, let alone go to work. Some of the participants expressed optimism and determination that in the future they would indeed go back to work. However, as we noted above, some felt that the constant cycle of benefits assessments and rejections made their attempts to recover much more difficult.