Barriers to rehabilitation and return to work for unemployed chronic pain patients: A qualitative study

Barriers to rehabilitation and return to work for unemployed chronic pain patients: A qualitative study

European Journal of Pain 11 (2007) 831–840 www.EuropeanJournalPain.com Barriers to rehabilitation and return to work for unemployed chronic pain pati...

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European Journal of Pain 11 (2007) 831–840 www.EuropeanJournalPain.com

Barriers to rehabilitation and return to work for unemployed chronic pain patients: A qualitative study Shilpa Patel *, Kay Greasley, Paul J. Watson Department of Health Sciences, Division of Anaesthesia and Pain Management, University of Leicester, Leicester General Hospital, Gwendolen Road, Leicester, LE5 4PW, United Kingdom Received 3 May 2006; received in revised form 21 December 2006; accepted 21 December 2006 Available online 22 February 2007

Abstract This paper explores the perceived barriers to return to work presented by unemployed patients with chronic musculoskeletal pain. The findings are based on one to one in depth semi-structured interviews conducted with patients from four sites in the UK. Interview data were recorded from 38 patients (15 male, 23 female) aged between 29 and 62 years the sample included patients who had participated in a vocational rehabilitation scheme, those who had refused to participate and a naı¨ve group. Patients were in receipt of long-term social welfare benefits (incapacity benefits) and recruited via local Job Centres. The mean duration of work absence was over 5 years. The data was transcribed and analysed by means of thematic analysis. Several themes were identified as barriers to return to work from the data including pain related issues, uncertainty (both financial and physical), the healthcare system, interaction with benefits providers, perceptions of employers and personal limitations. The uncertainty and the pain condition itself were the overarching barriers from which other obstacles stemmed. This is the first qualitative study of long term unemployed benefit recipients with chronic pain. Others authors have reported psychosocial factors as barriers to work among disabled populations however, this qualitative study has identified barriers specific to unemployed chronic pain patients. The themes identified will help with the planning and development of future initiatives for returning chronic pain patients to employment. Ó 2007 European Federation of Chapters of the International Association for the Study of Pain. Published by Elsevier Ltd. All rights reserved. Keywords: Work rehabilitation; Unemployment; Chronic pain; Musculoskeletal; Wage compensation; Psychosocial; Qualitative research

1. Introduction Chronic pain affects one in five adults in Europe resulting in substantial healthcare and social benefit costs (Pain in Europe, 2003). In 1998 the indirect costs associated with back pain in the UK were approximately £10.7 billion made up mainly of lost production and wage compensation payments (Maniadakis and Gray, 2000). In 2004, 8.6% of the working population in the UK was unemployed due to sickness or disability *

Corresponding author. Tel./fax: +1 16 258 8317. E-mail address: [email protected] (S. Patel).

and 7.7% were in receipt of benefits (Department of Work and Pensions, 2004) many due to musculoskeletal pain (Waddell, 2004; Waddell et al., 2002). Despite improvements in treatment and the publication of guidelines on how to manage common conditions such as back pain many countries have large numbers of people dependent on social security benefits who have not worked for many months or even years (Waddell et al., 2002). The longer these people remain out of work the less likely they are to ever return causing considerable cost to the social benefits system. There has been a considerable amount of research into factors which are associated with disability due to

1090-3801/$32 Ó 2007 European Federation of Chapters of the International Association for the Study of Pain. Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.ejpain.2006.12.011

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musculoskeletal pain and which predict failure to return to work from an episode of pain (Woby et al., 2004; Hills et al., 2001; Cooper et al., 1999; Petrie et al., 1996; Waddell et al., 2004). These tend to be psychological in nature for example, depressed mood, somatic anxiety (Vowles et al., 2004; Main and Burton, 2000) and in particular the fear of re-injury or the fear that work is injurious to the pain condition (Fritz and George, 2002; Vowles and Gross, 2003). Work related factors have also been identified but these are specific to employed people and their current job and working conditions (Main et al., 2005). These data have usually been based on questionnaire responses rather than personal experiences of the patient and although they have a predictive validity for a given population, they tell us little about the individual experience. Qualitative research on the other hand focuses on the individual, providing an opportunity to identify and address barriers and monitor the effects on return to work. There is little data on how the unemployed person on long term wage compensation perceives the barriers to return to work which often defeats attempts to return to employment or discourages engagement in rehabilitation altogether (Andersen, 2002; Wanberg et al., 1999). Most of the data on the influence of secondary financial gain has come from studies where the patient was employed at the start of their pain and usually remains employed. The evidence from such systems demonstrates a link between more generous compensation and longer work absences (Waddell et al., 2002; Waddell, 2004). We know much less about those who lose their employment and proceed onto long term social benefits support. In most developed countries unemployed people on social benefits experience significant financial loss (Linton, 1998; Waddell, 1998). Much less is known about the unemployed individual’s perception of the financial security of benefits and the potential risks of relinquishing these for paid employment. Governments are being forced to respond to the rising costs of incapacity related benefits in the light of increased costs and the problems of providing early pensions to those deemed unable to work. Although research has been published looking at disability in general, there is still a pressing need to identify those barriers which prevent long term unemployed people with chronic pain from returning to work or attending rehabilitation. This qualitative study aims to shed light on this area.

2. Methods A qualitative approach using thematic analysis was adopted for this study to facilitate an in-depth investigation of the individual experiences and perceptions of chronic pain patients and the barriers that exist for their

rehabilitation and return to work. Thematic analysis is one of many methods used to analyse patients ‘talk’ about their experiences. Thematic analysis is a recursive method where the researcher has the flexibility of moving back and forth between the phases of analysis (Braun and Clarke, 2006). A detailed description of the analysis process is described in the analysis section below. 2.1. Participants This was a cross sectional study whereby potential patients were identified from local incapacity benefits (IB is a wage replacement benefit payable to people deemed medically unable to work and is normally paid after 6 months of work absence due to injury or illness) registers at four study sites, Manchester, Bristol, Edinburgh and South Wales. Potential patients were a mix of those who were referred to and attended a Back to Work rehabilitation programme (Watson et al., 2004) (18), those who failed to attend the programme (16) and a group of naı¨ve patients (4). The naı¨ve group of patients was identified from IB registers as those that had not been referred to, or had no knowledge of the rehabilitation programme. By sampling from each of these groups we were able to gain richer data from people with different experiences of rehabilitation. Qualitative data through the use of constant comparison and review of the data allows the recruitment of patients with different characteristics until data saturation is reached, the point at which no new themes arise with the inclusion of additional interviews (Pincus et al., 2006; Walker et al., 2006; Strauss and Corbin, 1990). By taking patients with different rehabilitation experiences we were able to represent the experience of pain disabled people with potentially different perspectives. It is not the purpose of this qualitative research study to compare groups but to recruit in a manner which maximises the patient experience. In qualitative research it is difficult to determine what the optimum sample size should be. Participants were recruited from representative subjects and the data was analysed continuously until data saturation was achieved, In this study data saturation was achieved at 32 interviews. The data from 38 subjects were included as 6 interviews had already been scheduled or completed. The sample size in this study is much larger than comparative studies using this technique on employed pain patients or general disabled job seekers where sample sizes have ranged from 10 to 25 subjects (Baril et al., 2003; Mettavainio and Ahlgren, 2004) and where the data saturation was not observed. The eligibility criteria were: (1) unemployed (2) suffer from chronic pain (3) in receipt of or had been in receipt of incapacity benefit (IB), (4) aged 18 years and over and (5) fluent in English.

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2.2. Data collection Potential patients were invited to take part in an interview with a researcher from the University of Leicester by letter. This was later followed up by telephone to discuss participation and to arrange a convenient time for the interview. Permission to conduct the interviews was granted by the Government social security department responsible for wage compensation payments and work rehabilitation, the Department of Work and Pensions (DWP). An in-depth, semi-structured interview approach was used to gain insight into patients’ perceptions and beliefs about the barriers to rehabilitation and returning to work. Interviews were conducted either face to face or via telephone according to the patient’s preference. Each interview lasted approximately one hour and was tape recorded for later transcription. Interviews were conducted between November 2004 and March 2005. 2.3. Analysis The first phase of the analysis required accurate transcription of the recorded interviews. These transcripts were then used to explore and reflect patient’s personal perceptions and beliefs. Using open coding emerging themes were identified from the data by studying the scripts repeatedly before discussing the themes and possible meaning and interactions with the research team. This facilitated rigorous analysis of the qualitative data and ensured that all of the key themes were identified. These themes were then utilised as part of the analytic process. Data saturation was achieved at 32 patients but as interviews had already been scheduled and in some cases completed these were included in the analysis. In the second phase of the analytic process the transcribed interviews were imported into Nvivo, a qualitative data software package. Nvivo was used to help code each transcript, a process whereby a theme or themes were assigned to segments of text. Using a thematic framework approach, thematic matrices were developed (Ritchie and Lewis, 2003) to help classify and organise the data in relation to key themes, concepts and categories emerging. The framework approach provided an overview of each respondent’s attitudes towards key themes in a summarised, cross tabulated format.

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SD = 8.6 years) and out of employment from 3 months to 25 years (M = 5.2 years, SD = 4.9 years). Overall patients perceived the advantages of being able to participate in work generally outweighed the disadvantages. The majority of patients reported a desire to work if the circumstances permitted. Individuals were able to recognise the advantage of improved social contact, increased feeling of self-worth through work, and the potential financial benefits of working. 3.1. Painful condition Chronic pain itself was the underlying barrier from which most other barriers to work stem. As a result, many patients have reported significant changes in lifestyle. These changes have had a bearing on individuals’ family life as well as a negative effect on psychological well being. Overall, very few patients reported any attempts to plan for the future, primarily due to the unpredictable nature of the pain condition and physical mobility problems associated: ‘I have no objections at all to go back to work. But, I thought about this. I don’t know what I could do. I can’t sit for very long. I can’t stand for very long. Erm, in discomfort 99% of the time.’ [Male, 56] The problems associated with physical mobility stem beyond the workplace. Patients reported travelling to and from work would aggravate the pain making it difficult to manage the condition during work hours: ‘But what the big problem is, actually travelling to a place, actually getting to work, that tires me. Especially on buses. It shakes my back and my neck up. So it all adds to it. By the time I get there, I’m tired. So it’s a vicious, you know, circle.’ [Female, 48] Some chronic pain patients are better at managing their pain than others. Those who put a lot of time and effort into bringing their pain to a manageable level may find it difficult to justify causing oneself pain by travelling to and from work. Many patients report opportunities to work from home would be welcomed however, it is important to point out that such opportunities are generally limited to individuals with specialist skills and therefore the likelihood of such opportunities arising tend to be very limited. 3.2. Uncertainty

3. Findings A total of 38 patients (15 male and 23 female) agreed to participate in the study from the four sites. Patients were aged between 29 and 62 years (M = 49.4 years, SD = 8.3 years). On average patients reported being in pain from 1.5 years to 33 years (M = 10.3 years,

Reports of uncertainty were related to the painful condition as well as coping, return to work and outlook for the future. Patients feared their inability to cope physically and financially while in pain and therefore felt unable to plan a return to work. Patients held a very pessimistic attitude towards the future and in most cases

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avoided thinking about it. They felt unable to plan life style changes or commit to returning to work because of the unpredictable nature of their health and working capacity. Most patients reported living day by day rather than making plans which they felt they would be unable to realise. Additional uncertainty about the type of work they could return to and the potential negative effect on their very variable health status was also reported as a barrier. 3.2.1. Uncertainty about pain and health Pain as a barrier to work was primarily reported in the context of the uncertainly surrounding the painful condition. Chronic pain and the limitation associated with it, is not a constant phenomenon but fluctuate greatly and regularly. The unpredictability of the severity of pain and limitation, and the duration of a flareup made it very difficult for patients to foresee how they would cope with returning to and remaining in work: ‘So I think health wise, that’s going to be a big barrier, because I will need time off during the year to recover.’ [Female, 59] The fluctuations in pain were often reported as uncontrollable and therefore, to enable any form of return to work patients felt employers would need to provide flexible working patterns. It is important to mention that overall, the majority of patients in this study had been previously involved primarily in low-skilled low-paid jobs, and the availability of such flexible working patterns is generally rare in such industries. In a competitive job market the need for such flexibility, in the mind of the patient, puts those with chronic pain at a selective disadvantage. 3.2.2. Uncertainty about benefits: financial loss Fear of financial loss or financial vulnerability was a big concern for most patients, few believed they were better off on benefits, most were sure that working would give them a better income. The prospect of leaving benefits without the certainty of being able to remain in a job was daunting. There was a perception that it was very difficult to return to benefits if they proved unable to remain in work. Patients were unaware of benefits to assist them with return to work despite having had recent contact with the DWP: ‘. . .I’m frightened of giving it all up and trying and then finding that I can’t do it, physically can’t do it, and then not being able to get the benefit back again.’ [Female, 45] ‘I mean, it would be a major consideration in sorting things out, and sort of, you know, because obviously it’s a nightmare applying for things again, ’cos you can be

wasting quite a lot of time, and also the form filling takes a lot of effort.’ [Female, 29] ‘Well if I try and go back to work, and if I can’t do it, ’cos I know I couldn’t, they’re gonna take all this, take back my benefits again. And I’m gonna lose them, and I can’t afford that.’ [Female, 54] Patients not only perceive leaving benefits as risky but also returning back to benefits as time consuming and bureaucratic. This is particularly interesting as the Government have introduced a scheme whereby patients can return back to their benefits at the same rate as they left if they are unable to cope in work within a one year period. Despite the introduction of such an initiative there is a low level of confidence among patients that such a system would work in practice, leaving them financially insecure. 3.2.3. Working capacity Despite repeated contact with the medical profession and some rehabilitation personnel (physiotherapists, occupational therapists) most patients felt they had been given no guidance on the type of work which was appropriate for their condition. Furthermore, they felt the advisors in the DWP were unable and unqualified to give this advice: ‘Well that’s the trouble; you see I don’t really know what I could do. I’m kind of torn.’ [Male, 43] Some reported getting medical advice not to return to work in the same job or industry they had previously worked in. For some, this can be particularly daunting especially if they have spent many years training and building up experience in one industry or job. Often this advice was given by the patient’s General Practitioner with whom they often have a trusting relationship. Therefore, it is important to bear in mind that some of the uncertainty about work could be partly addressed by a resistance to change in the light of information which appear to contradict that given by perceived, powerful others. 3.3. Healthcare barriers Individuals described the problems they had encountered in terms of long waits for appointments, feelings of not being taken seriously by the medical profession being seen as not having a ‘‘real’’ problem, and being trapped in a continuous cycle of repeated consultations. Patients reported a lack of opportunity for them to plan return to work because of health care consultations and/ or engagement in treatments: ‘In the beginning I just sort of thought, oh God you know, I was getting frustrated ’cos I was just going from one man to another man,. . .’ [Female, 47]

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‘The problem is the waiting, the forever waiting for appointments for scans and for x-rays, and that gets me down more than anything. I’ve been waiting since April . . . and I haven’t even had a letter to say I’m on the waiting list.’ [Female, 45]

receive medical care often have high expectations from the treatment outcomes. Unfortunately, in many cases the positive outcomes are limited or short lived often leaving the patient to manage both psychologically and physically:

Many patients had undergone medical evaluation to qualify for benefits, the effect of being told they were unsuitable for work was often catastrophic. Patients reported that receiving this information deterred their involvement in work rehabilitation or planning to return to work even if they previously had felt physically able to return:

‘Up until when I had the operation, that was a light at the end of the tunnel sort of thing, ’cos I was really putting my hopes on that. And I thought 2 or 3 months after the operation, the soreness would have gone and I could go back to work. When that didn’t materialise, and the pain started getting worse, I did start to get a bit down.’ [Male, 52]

‘Erm, but, I felt so useless, you know. I cannae go back to work, but even then, I didn’t even think, I mean somebody once said to me, well why don’t you just go and look for another job. Because I was in so much pain, and because they had told me I was unfit, it kind of, it was indelibly inked into my brain, I was unfit. I couldn’t do anything.’ [Female, 56] Some felt to be classed as unsuitable for work was the end of their working life and found it very difficult to even contemplate returning to work because they had now come to terms with not working again and reversing this thought process was difficult. Any assessment looking into patients’ physical ability to return to work need to be considered carefully due to the psychological implications associated with the overall verdict. From the above it does seem the assessment for eligibility for benefits was a deterrent to future engagement in rehabilitation.

3.4. Psychological barriers The underlying reason for psychological problems and distress can be primarily attributed to the chronic pain and the lack of control patients felt they had over their condition. Patients’ perceived inability to control and mange their pain resulted in feelings of anxiety. Frequently individuals reported feelings of depression, fear, loss of confidence and frustration. In such circumstances rehabilitation and return to work often became secondary issues: ‘Because if your body’s falling apart, you don’t really want to pull the rest of your life apart. What you want to do is build it up again, which is why I think it’s so important. And for me, hopefully what I’m looking for, I’m keeping my fingers crossed at the moment, is that that does bring me back onto a level playing field, and yes I will go straight back out and start looking for work again.’ [Female, 29] Psychological distress and in particular reported feelings of depression and low mood levels are attributable to the outcomes of healthcare. Patients waiting to

This cycle of waiting for healthcare then finding the treatment has limited effects often results in patients seeking further medical interventions which consequently brings them back into the consultation cycle. 3.5. Interaction with the benefits organisation On average the patients interviewed had spent 5 years out of work due to chronic pain. Having been unemployed for such long periods patients require support in getting back into the workplace. Patients had mixed views about their involvement with the social benefits organisation. They were happy with the support they received when seeking and applying for benefits, but reported support and advice in relation to return to work was limited. Where help was given the respondents felt the jobs offered were inappropriate to their condition: ‘I was very, very disappointed with the help I had to get back to work, erm, because it’s like I said, all the jobs she kept giving me were jobs that I knew I couldn’t even attempt to do, and she put me down for cleaning and I kept saying to her why are you giving me cleaning jobs. Then she said to me that she didn’t know what else to put me.’ [Female, 58] ‘I’m keen to go back and they seem, they don’t seem keen to get me into work.’ [Male, 55] 3.5.1. Benefits organisation staff skills Looking at the role of the benefits organisation in supporting patients back into the workplace, some patients reported staff to be friendly however, they were seen to be limited in their skills and knowledge with regards to return to work. Some felt they provided limited support in helping patients to develop a pathway for returning to work: ‘I went to these different interviews and, you know, she was very nice and that, but nothing came of it. And I’ve rang a few times and, you know, they haven’t come up

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with anything. Just time went on and nothing materialised.’ [Female, 48] Staff are faced with fundamentally different challenges when working with unemployed people with chronic pain, as opposed to unemployed people generally. Patients felt in some cases the staff were not skilled enough to work with patients who had a chronic pain condition. They felt staff focused too heavily on the unemployed person, as opposed to an unemployed person with chronic pain: ‘Erm, I do think perhaps the Job Centre needs to perhaps have staff more trained to deal with people who are on the sick as opposed to people who are just looking for jobs, because you know, I saw people, it was a big thing for me to go down the Job Centre anyway psychologically, and you are made to feel as if you are a victim. You’re down there, you know, I think perhaps they should be a bit more sympathetic and perhaps have people who have got more skills dealing with sick people as opposed to just jobless people if you know what I mean.’ [Female, 53] It is essential that these issues are addressed as soon as possible. The Jobcentre is the first point of contact for patients wanting to return to work and for assessment of work intentions of those who are unemployed. Most patients had a dread of being invited to the Job Centre for assessment because of their perceptions of the likely experience. Although those who attended found the staff pleasant and effective in assessing their benefits most found there was little assistance offered towards work. Patients need to be able to feel they can approach staff and receive appropriate advice and information. 3.5.2. Permitted work Permitted work rules allow patients to work and earn a set amount per week for a limited period of time. The aim of such an initiative is to help ease patients back into work and off benefits. However, patients often view the opportunity to participate in such work as a means of topping up existing benefits as well as obtaining the social and psychological gains of going out to work: ‘cos I mean with the benefit it was £61 a week. I mean, we couldn’t really cope on that without me working at some sort of level.’ [Male, 50] The majority of patients interviewed reported willingness to participate in permitted work but reported concerns over ending of such after the permitted time. Patients felt it was somewhat unfair to make them choose between leaving benefits and returning to work or ceasing the permitted work and returning to the original benefit and a reduced income.

3.6. Personal obstacles 3.6.1. Qualifications and experience For some patients having few or no qualifications and or limited amount of experience was perceived as a significant barrier to work. Patients felt they would need to gain qualifications, retrain and/or gain more experience to increase their chances of employment: ‘its catch 22, you’re caught between you need experience to get the job, you need the job to get the experience, and the only other way around it is to have this qualification so that I can do it, but I’m stuck.’ [Male, 43] Those who had a moderate to high level of academic or vocational qualification expressed some degree of resistance to retraining or accepting a job not commensurate with their level of training or previous experience. There was a fear that accepting a low paid job would consign them to low pay employment permanently: ‘Why the hell would I go to college, spend a year at university and then go and work behind a (cash) till. That ain’t gonna happen.’ [Male, 45] Patients are often in a difficult position under such circumstances primarily because jobs offered by the employment advisors tend to be low skilled jobs. It appears contradictory that a higher level of skill is a barrier to return to work but this can be the case where people feel entitled to better jobs because of their previous seniority, experience or qualification. 3.6.2. Age Older patients were less likely to express an interest in retraining and return to work due to their proximity towards retirement and older people felt doubly disadvantaged by age and disability. They also felt that employers were less likely to take notice of their application in view of their age, fear of repeated rejection because of age was important to older patients and this was a disincentive to applying: ‘I got interviews and then, sorry your application is unsuccessful. As soon as they say to me how old are you.’ [Male, 58] ‘I know I won’t ’cos I retire next year anyway. So I won’t be going back to work, but you do miss it.’ [Female, 58] 3.7. Perceptions of the workplace and employers Some individuals felt concerned over their inability to return to work in the same industry or job. This concern

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was primarily because patients had a lack of knowledge about other potential job opportunities. Adding to this were concerns over the competitive job market. Patients were worried about competing with pain free applicants and therefore saw no point in applying for jobs and attempting to return to work. 3.7.1. Resistance to change Patients reported anxiety if they were unable to return to work in the same job or a similar field. They often only saw themselves in terms of their previous employment rather than considering alternatives. Some of the comments from the interviews suggest patients fear returning to work in a job or industry that is not exactly the same as their previous employment. Some felt they had worked in one industry for many years and therefore they are restricted in terms of the skills they have to move into other industries: ‘I’ve always done manual labour. I mean, I worked 32 year for the same company. . .they shut down in 2001 and that’s basically been it...I’ve never done anything else, so I wouldn’t know what to look for, if you see what I mean.’ [Male, 55] It would appear that a previously narrow range of experience or employers might mitigate against considering other types of work or employers and make it difficult for the patient to actively pursue alternative work. 3.7.2. Job availability and competitive job markets When patients have been out of work for long periods due to chronic pain, they perceive it is difficult to get a foot back into the labour market, especially as they see themselves in competition with healthy, pain-free individuals. Patients held the perception that healthy individuals would be more appealing from an employer’s perspective therefore; there is little point in attempting to return to work: ‘I’ve tried going to the machines down in the Job Centre. I see something, I think that would be interesting I’ll apply for that, but then I might be battling against 1500, 1800 other people (for a job), and then they look sideways at me, sort of thing.’ [Male, 43] This is likely to be of greater importance in times when the labour market is very competitive such as during periods of high unemployment. Employers are the gatekeeper to the workplace. Patients reported negative attitudes and limited support from employers which can restrict opportunities to return to work. These perceived attitudes were not only barriers for patients obtaining work but also barriers to remaining in work:

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‘You get the token black. You get the token cripple in all firms, you know what I mean. I don’t care what people say. There’s still prejudice in the workplace, and all day long it’s gonna be there for a long time. Certainly throughout my generation and maybe through yours. The world isn’t educated enough at the moment.’ [Male, 45] 3.7.3. Employers limited understanding and support One of the important employment related obstacles is the perception that employers have limited understanding about pain due to ignorance and a lack of awareness. However, patients do acknowledge that chronic pain is difficult to understand without personal experience: ‘So, speaking for the private sector, and I’ve got nearly 40 years experience in that sector, I think on balance, erm, employers do tend to be unsympathetic and lack tolerance. This may be based on ignorance or lack of awareness.’ [Male, 58] Interestingly, patients reported the availability of an aid, such as a walking aid, indicating disability or injury would make employers more inclined to believe the pain existed. There was a belief that employers see people with health problems as more ‘‘risky’’ to employ and more likely to absent from work. More support from employers could help maintain patients in the workplace instead of resulting in unemployment. 3.7.4. Fear of letting employers down The possibility of letting employers down because of the uncertain nature of chronic pain was frequently cited as a reason for not engaging in returning to work. Indeed some had left their previous work voluntarily because they could not guarantee their employer optimal performance due to their pain. Letting people down was expressed in terms of a threat to the patient’s own self image as a worker: ‘. . .I don’t trust myself to commit myself to anybody else work wise anymore, for fear of letting them down.’ [Female, 52] Such barriers can be challenging for employment staff to address. This is particularly problematic in a society where there is a lot of competition for work and therefore employers are more inclined to employ reliable pain free individuals.

4. Discussion This study helps to highlight some of the barriers faced specifically by unemployed patients with chronic pain in their attempts to return to work. Previous

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studies have generally focused on employed patients with disability as a whole and failed to isolate those with specific conditions. In addition the failure to distinguish between long term unemployed and employed patients in research is problematic primarily because it is usually the long term unemployed patients who are considered difficult to rehabilitate and return to work and who represent the largest amount of health and social welfare spending. Overall patients viewed working as a positive part of life; they recognise the value of work not only in terms of financial remuneration but also for the social contact and feeling of self worth which accrues when employed. The overarching barrier for most patients was the uncertainty surrounding their pain condition. From the data it seems the barriers to work stem either directly or indirectly from the unpredictability of the painful condition. Physical limitation was reported as a barrier and this is in common with many other conditions such as stroke and myocardial infarction (Saeki et al., 1995; Perk and Alexanderson, 2004) The intrusive nature of pain limiting postures such as sitting as well as mobility makes it unique from many other physically limiting conditions in that it affects a wide variety of activities which the patient perceives as precluding light work as well as physical work. Chronic pain is characterized by a fluctuating level of pain and incapacity which is difficult to predict and difficult to manage. Uncertainty about future health hinders many patients’ willingness to return to work (Cooper et al., 1999). They perceive returning to work carries not only physical but also financial risks (Seebohm and Scott, 2004). Financial risks are not simply associated with a perception that they are financially better off on benefit but that trying to return to benefits is difficult and financial problems will result if a job can not be sustained. Respondents were however keen to participate in permitted work trials because of the extra income it provides. This runs counter to the intention of many of these initiatives which are viewed as a route off benefit rather than a top-up to existing benefit. They felt that by the nature of their disability they should be allowed to work to top-up their income. This presents a social welfare inequality with respect to non-disabled people who choose to work part-time. The unpredictable nature of pain made some patients reluctant to commit to an employer for the fear of letting employers and themselves down. Secondary financial gain has often been cited as the reason for not returning to work (Fishbain et al., 1995) but the data is often equivocal (Linton, 1998). Additional financial assistance for those returning to work is available yet there was limited knowledge about such schemes even among those who had recently been in contact with benefits advisors. The perception of the bureaucratic and complex nature of the benefit system may be a more

important deterrent. When faced with a complex system patients favour the simple strategy of remaining on benefits. Studies among stroke patients have previously demonstrated that those on public income support are less likely to return to work than those on private schemes. (Heinemann et al., 1987; Saeki et al., 1995) Discussing the benefits available sooner, making the benefits system simpler and providing better on-going support through re-employment might alleviate this problem. Uncertainty with managing chronic pain brings numerous challenges for patients. Such unpredictability limits both the ability and desire to plan for the future in particular over issues relating to return to work. Patients who have been unemployed for long periods adjust to a life without work. Substitute activities which can be engaged in on the patient’s own terms allowing for the variability of the condition such as child-care, attendance at training courses, voluntary work and even permitted work help to provide social and psychological gains (Andersen, 2002; Young and Murphy, 2002). Healthcare issues included long waits for healthcare appointment, being caught up in a constant cycle of repeated consultations and a lack of appropriate advice from health professionals on suitable work. Healthcare was not a rehabilitation experience for these people but actually delayed rehabilitation. This is in common with employed people also and a change is required in healthcare to give rehabilitation a higher priority in musculoskeletal pain (Waddell and Watson, 2004; Shrivastava and Chamberlain, 2005). Being classed as unfit for work has a major negative effect on those so classified making rehabilitation difficult. It is unwise to give people with musculoskeletal pain the impression that they will always be unfit for all work. For some, being signed off as unfit becomes a justification for not working even if they felt able. It is important to note, the patient–practitioner relationship is an important determinant of end outcomes (Peebles and Moore, 2000; Anema et al., 2002) and healthcare practitioners are very powerful sources of ‘social change agents’. How current inability to work is presented to the claimant and how an expectation of future work can be maintained requires attention. The patients in this study were particularly pre-occupied with the restrictions the pain had imposed upon them. This was despite a belief that work was indeed good and they would be better off working. There is a general report of a repeated reinforcement of the perception of ones self as a disabled chronic pain patient through the interference of the pain in daily life, the physical restriction imposed by the condition, and also through the healthcare and benefits seeking experience. The patients’ perceptions of self appear to be reflected in these experiences which make it very difficult to see a possible alternative self – a successfully working person.

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Pincus and Morley (2001) have described a model whereby pain, illness and self become enmeshed which leads to distress, hopelessness and difficulty in seeing an alternative self or scenario. The patient in effect feels entrapped (Morley et al., 2005; Hellstrom, 2001) and this is reflected in their interpretation of events and of the future. Maintaining a self image as a worker has been demonstrated to be crucial in re-seeking employment (Mettavainio and Ahlgren, 2004). Patients’ perceptions of benefits staff need to be considered with caution; they may be seen to self-justify unemployment. There does appear to be reluctance among the advisors on the front line to discuss return to work with this group and view them as permanent recipients of benefits (Goldstone and Douglas, 2003). Patients felt employers and fellow employees perceive chronic pain negatively therefore making return to work not only difficult but also daunting. This perception is seen in common with other disability groups who believe that, despite legislation, employers and employees have a negative attitude to people with disabilities and in particular to a condition which is not immediately obvious. Research is limited but there is data to demonstrate that, given the right help, this patient group can successfully return to and remain in employment (Watson et al., 2004). Proximity towards retirement has been found to have an impact on the decision to return to work in this study and previous studies on a wide range of conditions (Goldstone and Douglas, 2003; Perk and Alexanderson, 2004; Bradshaw et al., 2005). Older patients perceive employers hold negative attitudes towards older people and they are doubly disadvantaged by disability and age. Many patients reported having few qualifications, marketable skills or experience. Those not working can have an increasingly difficult job returning to work if they lack the skills employers need (Peters et al., 2003; Thornton, 1998; Waddell, 1998). In the UK, 62% of those on IB have no qualifications (Dorsett et al., 1998). Overall better rehabilitation outcomes are observed among those with high levels of educational attainment (Straaton et al., 1996) those with few or no qualifications are likely to return to benefits soon after leaving them (Osgood et al., 2003). The interesting observation that better educated people were reluctant to return to work suggests that the jobs presented to people with chronic pain were of low quality. In the UK unemployed chronic pain patients have limited access to vocational rehabilitation services because they have slipped out of work rehabilitation schemes (British Society of Rehabilitation Medicine, 2000). Rehabilitation of absentees from the workplace due to sickness is a complex process (Bloch and Prins, 2001). Multidisciplinary approaches to treatment should

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not only be concerned with medical and psychological issues but should also address the obstacles to return to work as seen by the patient, only then will success be maximised. The health care system alone can not address all of the issues, this helps explain the lack of success rehabilitation and pain management programmes have in returning people to work (Waddell and Watson, 2004). The findings of this study demonstrate that chronic pain patients on long-term social benefits share some of the same perceived barriers to re-employment seen in other disabled groups. However, chronic pain patients are faced with a unique set of barriers to their return to work which are mainly associated with the unpredictability and lack of visibility of their condition (Watson and Patel, 2006). Despite the high value attached to work those with chronic pain express a form of hopelessness which may be a key obstacle to re-employment. This research demonstrates some of the barriers which must be overcome during rehabilitation in addition to those traditionally associated with poor clinical outcomes. Although previous studies have demonstrated that global negative appraisal of the likelihood of returning to work are predictive of failure to return, this study illuminates the specific nature of these factors which should help measurement instruments, such as questionnaires, become more specific and allow appropriate interventions to be identified.

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