Supporting People with Multiple Sclerosis in Employment: A United Kingdom Survey of Current Practice and Experience
Townsend, Gail, British Journal of Occupational Therapy
This paper reports on one section of a larger project, which examined employment issues from the perspectives of people with multiple sclerosis (MS) and the professionals who may support them in retaining or regaining employment. The aims of the study were, first, to explore the knowledge and experience of MS specialists, occupational therapists and disability employment advisers of employment and MS and, second, to identify the current practice of professionals supporting people with MS in work. A postal questionnaire was used to elicit a wide range of responses.
The results showed that the impact of MS on employment was well understood, but that there was less awareness of the wider social influences on the ability to retain employment. There was evidence of a range of support being offered by some participants, but there appeared to be a gap between the problems reported and interventions offered overall.
There is a need for further research to develop effective interventions targeted at supporting people with MS in work, which will underpin the implementation of Quality Requirement 6 of the National Service Framework for Long-Term Conditions.
Key words: Multiple sclerosis, employment, practice, occupational therapy, vocational rehabilitation.
Multiple sclerosis (MS) is a complex and progressive neurological condition commonly affecting adults of working age (Compston and Coles 2002). MS presents with a wide range of symptoms, and the pattern and course of the disease vary from individual to individual (Polman et al 2001). Research indicates that people with MS are vulnerable to becoming unemployed. A very large study that examined data relating to employment from the 123,000 respondents in the National MS Survey found that 91.9% of respondents had an employment history and 58.5% were employed at disease onset (Kornblith et al 1986). However, within 5 years only 37.5% of those who were working at the onset of the condition remained in employment. A more recent Spanish study found that 71.3% of patients with progressive MS and 65.8% of patients with relapsing remitting MS were unemployed (Morales-Gonzales et al 2004).
The importance of employment extends beyond financial independence. Work and other meaningful occupations help to maintain positive health and wellbeing (Wilcock 1998, Yerxa 1998, Reynolds 2003, Waddell and Burton 2006), although these positive aspects may not be appreciated until the opportunities for work and occupation are taken away (Yerxa 1998). People with MS have a near-normal life expectancy (Ebers 2001) which, coupled with the young age at onset, means that they and their families can spend a long time dealing with the consequences of unemployment.
The impact of MS on employment
Research in North America indicates that the factors influencing the ability of a person with MS to remain in employment are complex. The loss of employment cannot be ascribed simply to having MS, but is a combination of disease characteristics and workplace, social and demographic factors (LaRocca et al 1985, Edgley et al 1991, Dyck and Jongbloed 2000, Roessler et al 2001, Johnson et al 2004).
The loss of employment is associated with increased disability, as measured by the Kurtzke Expanded Disability Status Scale (EDSS) (Kurtzke 1983, Grima et al 2000, O'Connor et al 2005, Pompeii et al 2005). The EDSS does not measure fatigue, nor is fatigue clearly linked to levels of disability or impairment (Schwid et al 2002); however, fatigue is a common symptom that has a significant impact on one's ability to work (Gulick et al 1989, Dyck and Jongbloed 2000, Rumrill et al 2004). Roessler et al (2004) found that the severity and persistence of specific symptoms may be stronger influences on the ability to retain employment than general disability, recognising that some symptoms can interfere with performance in the workplace more than others. …