Work is a fundamental aspect of our lives. It can provide a salary, but both paid and unpaid work give a sense of self worth, an opportunity to lead an independent life and to be a fully integrated member of society.
Employment is one of the ten principles to promote the quality of life of people with MS.
Our new Global MS Employment Report shows that, despite recent steps forward for people affected by MS in the workplace, too many people are leaving employment earlier than they want or need to.
The report was informed by a survey of over 12,200 people affected by MS in 93 countries. The survey was a repeat of one which we carried out in 2010. Read the results of the 2010 survey here.
- 43% of people with MS who were not in employment had stopped working within three years of diagnosis. This figure rose to 70% after ten years.
- 62% of people with MS who were not in employment said fatigue prevented them from staying in work – far less than the 85% reported in 2010.
- Fewer people had reduced their working hours or taken a short term absence compared to 2010 data.
- More people reported not needing to change their working pattern compared to 2010 data.
- Effective changes and adaptations could keep more people with MS in work.
Many of the changes required to enable people with MS to stay in employment, such as adaptations in the workplace or access to treatments, are achievable through advocacy.
- Understand the nature of MS so that if an employee discloses their diagnosis you can ensure the workplace is supportive. Remember that MS is different for everyone, so ask people what they need.
- Have the work environment assessed by professionals who understand the needs of a person with MS and can suggest adaptations to accommodate them.
- Be aware of the potential effects that being a caregiver for someone with MS can have and how this could affect the caregiver’s ability to work.
For MS Organisations
- Provide information for people affected by MS to help them explore options to stay in work, understand their rights and know what services and support are available.
- Encourage access to appropriate treatments. This includes disease modifying treatments to help manage MS and occupational therapy to support people in the workplace.
- Provide information and training to people with MS to help them to educate their employers and colleagues on issues related to MS and how to support people with MS at work.
For Policy Makers
- Ensure that, where they exist, laws to prevent disability discrimination are well publicised and enforced. Where such laws do not exist, introduce legislation and protect the right to work regardless of disability, in line with the Convention on the Rights of Persons with Disabilities.
- Require employers to make reasonable adjustments to the workplace when necessary.
For People Affected by MS
- Take an active role in managing your MS and consider telling your employer about it, so that they can make reasonable adjustments to your work environment and workload as soon as possible.
- Ensure that you and your employer are aware of what support you are legally entitled to.
- Discuss your condition with family and friends so that people around you know what to expect and can be supportive.
For Further Research
- Qualitative research should be carried out into the relationship between employment and MS, to develop understanding of how the disease affects employment. Such research should investigate whether employment has a positive impact on health.
- There needs to be more research into whether intervening soon after diagnosis is a critical factor which could help people to stay in employment, as this survey indicates may be the case.
- Further research should be done on the relationship between MS and employment in specific regions. This would better capture the country-specific nature of employment and MS.
- Given the discrepancies between how caregivers and people with MS answered some questions, more research should be done into the employment situation of caregivers.