Work is a fundamental aspect of our lives. It provides not only a salary, but a sense of self worth, an opportunity to lead an independent life and to be a fully integrated member of society. A study commissioned by MSIF into the global economic impact of MS highlighted the loss of employment or early retirement as the single largest cost factor in the total cost of MS. This represents not only a direct cost in terms of loss of earnings but indirect costs in terms of quality of life and affects not only the person with MS and their family but also society as a whole.
In order to gain a global perspective of the impact of MS on employment and to raise awareness of work-related issues faced by people with MS, in 2010 we designed an online survey on employment and MS in ten languages.
Download the full results of the survey.
Survey results in summary:
- 8,681 participants from 125 countries took the survey
- 87% had MS (more than 7,500).
- 96% were of working age (19-60 years).
- 42% had been diagnosed with MS for 5 years or less.
MS and employment
- 59% of participants with MS were employed. More than 2/3 of these were in full-time employment.
- 67% said that having MS had at some stage impacted on their work (by reducing working hours, taking short term leave, or changing jobs or type of work). 33% reported no change.
Factors that enable people with MS to remain in employment
- Having stable MS was listed by 56% as the most important factor, while both symptomatic and disease-modifying treatments were also listed as important in enabling people to remain at work.
- 41.5% of participants said that seated work was one of the most important enabling factors for employment and 37.6% of participants saw flexible working hours as important.
- Only 6.1% of participants thought that computer adjustments made a difference to their work and 4% said that adaptive aids may help them in the workplace.
- 60% said that support from family was important and 49% identified a supportive employer and colleagues as the main factors enabling people with MS to remain in employment.
- Less than 5% said that childcare support or an MS society helpline would make a difference to their ability to remain in employment.
- 11.2% of participants thought that financial support was a priority.
MS and unemployment
- 83% of people with MS leaving work prematurely had stopped working due to MS.
- Strikingly, almost half (47%) of these, did so within three years of being diagnosed.
Factors that prevented people with MS from remaining in employment
85% of unemployed participants identified fatigue as being particularly detrimental to their ability to remain in work, while 72% said that mobility related problems were difficult to overcome.
More than 40% listed cognitive impairments as a barrier to work, while less than 20% said that tremors and speech impairments caused difficulty in remaining at work.
Similar trends were seen in the individual language surveys. In addition, the Chinese and Russian surveys also listed urinary or bowel problems as an important barrier.
49% listed unpredictable workloads as a major barrier.
More than 30% of participants also said that a lack of support from an employer or work colleagues, lack of time off when needed and their attitude to work (e.g. a lack of confidence or motivation) had affected their employment.
Less than 10% said that a lack of a lift in the office or limited help with childcare had made it difficult to remain in work.
While access-related issues were rated highly in the global survey, the Russian survey listed access to transport, and the Chinese and Arabic surveys listed access within the workplace as the most important factors preventing people with MS from remaining at work.
Changes that would have helped people with MS remain in work
Flexibility was a key factor in enabling people with MS to remain at work.
48% of unemployed participants said that flexible work hours would have made a difference.
42% said that the ability to take regular breaks to rest would have enabled them to continue working and 34% said that to do this, a place to rest would be necessary to support them at work.
Better awareness of MS among work colleagues was also listed by 34% as being important.
Carers and employment
- 34% of carers who participated in the survey said that their employment had been affected.
- 16% said that they had to reduce their working hours and 10% had increased their working hours.
- 8% had changed jobs or type of work while 49% said their work had not been affected.
Factors that enable carers to stay in work
Family support and ‘care work not being too demanding’ were listed as the top factors by more than 40%, while more than 30% said that a flexible work schedule and an understanding employer would make it easier for them to continue working.
Of those who had already given up work, 40% said that a flexible work schedule would encourage them to return to work, 38.5% said that monetary support was an important factor, and 31% said that a supportive employer was of paramount concern.
In summary, living with MS has profound implications on employment for many people from a very early stage. While there are no adequate measures yet to manage symptomatic factors such as fatigue, better information for people with MS on disability rights and availability of services, more research to provide better treatments and better disease management and relatively simple changes in the workplace, such as flexible working practices, should help people with MS to continue working for longer.