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Employment and MS: global survey results
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| MS in focus Issue
16
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2010
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Dr Dhia Chandraratna, MSIF’s International Medical and Scientific Officer, summarises the results and recommendations of the World MS Day Employment and MS survey. |
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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 workrelated issues faced by people with MS, we designed an online survey on ‘employment and MS’ in ten languages. It was linked to the World MS Day website and Facebook page and also advertised through MSIF member societies. Respondents were therefore a self-selecting sample.
MS and employment - 59% of participants with MS were employed. More than two-thirds 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
MS-related factors- Having stable MS was listed by 56% as the most important factor. Both symptomatic and diseasemodifying treatments were also listed as important in
enabling people to remain at work. - 42% of participants said that seated work was one of the most important enabling factors for employment and 38% of participants saw flexible working hours as important.
- Only 6% of participants thought that computer adjustments made a difference to their work and
4% said that adaptive aids may help them in the
workplace.
The fact that having stable MS was listed as the most important factor highlights the importance of disease management and the challenge of managing common symptoms such as fatigue from an early stage. This is supported by the fact that symptomatic treatments and disease-modifying drugs were also rated as major factors. Studies have shown that the number of people remaining in employment has increased in the 2000s compared to the 1980s and this may, in part, be explained by improved treatments and better disease management.
Support-related factors.- 60% said that emotional 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.
The importance of family support suggests that family counselling and emotional support can be of great benefit to people with MS and their families. These results also highlight the importance of educating mployers and people in the workplace about MS.
MS and unemployment.- Of the 41% of people not working, 83% left work
prematurely due to MS. - Almost half (47%) of these, did so within three years of being diagnosed.
This last point was a significant result of the survey.
The reasons for this are not clear but it poses many questions. Why do they leave work so early? Did they leave voluntarily? Was it due to the lack of knowledge of legal protection available to employees? Or to not fully exploring options to manage symptoms while remaining at work? Was it following advice to reduce stress or a reassessment of lifestyle and priorities? Although one would expect better disease management and treatment at the early stages of the disease to improve these figures, the high numbers leaving work so early suggests that drug treatments either may not be as effective as hoped for or are not being used to maximum benefit at this stage.
Factors that prevented people with MS from remaining in employment
Symptom-related factors- 85% of unemployed participants identified fatigueas 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.
Other factors- 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 own 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.
- Access-related issues were rated highly in the global survey in some specific areas. The most important factor preventing people with MS from remaining at work in the Russian survey was access to transport, and access within the workplace in the Chinese and Arabic survey.
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.
Simple, inexpensive measures such as these can make a big difference and are relatively straightforward solutions. The last point stresses the importance of educating people in the workplace about MS.
Recommendations
Extending the possibilities for people with MS
to stay in work is a challenge for governments,
employers, medical professionals and MS societies.
The outcomes of this survey lead us to make the
following recommendations:- Provide information for people with MS and their carers to help them fully explore options to remain in employment, understand their rights and know what services and support (medical, financial and social) are available.
- Improve vocational rehabilitation services to advise people with MS on how symptom and disease management can help while staying in work.
- Ensure early intervention to enable people with MS to seek help before a crisis point is reached, and to provide information on employment to those newly diagnosed. Employment should be considered as part of the overall management of MS.
- Educate employers and people in the workplace on issues related to MS and how to support people with MS at work. Employers need to be given information on useful workplace adjustments and the benefits of flexible working, routine workloads and rest breaks.
- Provide social, emotional and financial support for people with MS and their carers.
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. For a copy of the full report, including results of questions for carers of people with MS, please click here.
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| Thousands take part in World MS Day 2010
World MS Day is an annual global day for action where MS societies, medical institutions, private companies and interested individuals cometogether to form a global movement to end MS for good. This year activities took place in 67 countries and ranged from fundraising to awareness raising, from public health meetings with key representatives of government, to complimentary therapy seminars for people living with MS and their families.
Activities were focussed around the 26 May, however many organisations held awareness weeks, months, or even launched an ongoing campaign to raise awareness about MS. Australians kissed goodbye to MS while Americans thought globally and acted locally. Canadians moved for MS, while Uruguayans danced and sang. South Africans took part in golf tournaments and dinner parties, while Italians discussed the issues facing people with MS with the Minister of Health. Activities were well supported with thousands of people attending events, and thousands more showing their support by signing up on the World MS Day website and joining the Facebook site.
To find out more and to join the global movement for World MS Day 2011 go to www.worldmsday.org
The Korean MS Society rallied support to end MS with marches and stands in Seoul. |
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