Work matters: a UK wide survey of adults with rheumatoid arthritis and juvenile idiopathic arthritis on the impact of their disease on work

Background 10 years ago, NRAS ran a survey and found that people with RA are less likely to be in employment than the general population, and that there are significant barriers to work.

Objectives To understand how the situation has changed over the last 10 years, NRAS surveyed over 1500 people with RA to understand their experiences.

Methods NRAS worked with the University of Manchester (UoM) to develop open and closed questions to explore the current state of employment of people with RA, as well as barriers to remaining in and returning to employment. The survey was developed jointly with UoM and contained validated questionnaires on absenteeism and presenteeism. The survey was distributed by NRAS to its members through email and non-members through social media.

Results 63.3% of people surveyed were in employment, an increase from 2007 when this figure was at 54.8%. However, a significant number of people were concerned about the possibility of remaining in the job if there were any changes to the nature of the work. Participants commented on the challenges and advantages of work, with the primary advantages being financial security, sense of purpose and enjoyment, and the employer/working environment. However, many of the barriers to work included the role being too demanding, RA symptoms, lack of reasonable adjustments, the commute, and the lack of an understanding employer/colleagues. Almost 40% of participants stated that their employers did not understand the disease and that help that was not available. Nearly half of all respondents had to use annual leave in order to deal with their RA; this being just one example of how employers had breached the .Equality Act 2010 The survey found that low numbers of people claimed benefits with Disability Living Allowance and/or Personal Independence Payments and Blue Badge being the most commonly claimed. Many participants had co-morbidities, with high numbers of people reporting mental health issues.

Conclusions Fewer people are losing their job or retiring early due to the disease which may be due to better and earlier treatment. However, the attitudes of employers and colleagues can have a great impact on the ability of someone with RA to remain in work. Progress must be made to raise awareness of employers’ responsibilities in relation to employees with disabilities, but also to signpost employers to help that is readily available for them.