No Compromises: Supporting people with MS to thrive in and out of work

Posted on by Asli Atay BudakJon FitzmauriceAman Navani

Black woman on a tablet at work © Adobe Stock

There are an estimated 150,000 people living with multiple sclerosis (MS). It is a condition that affects the central nervous system and can cause problems with movement, thinking and feeling. People’s experience of MS can change over time and affect individuals in different ways.

The UK Government has committed to increasing the employment rate and supporting disabled people and those with long-time conditions to remain in work. However, there is currently limited evidence of the employment experience of people with conditions like MS. In partnership with the MS Society, we have undertaken a study to improve the understanding of the employment experiences of people with MS.

The findings are based on survey of 1,125 people with MS in the UK and highlights the enablers and barriers to staying, progressing and thriving in work.

Key findings:

  • MS impacts people’s ability to work, with 96% of survey respondents reporting that their MS has had an impact on their ability to work. For some people with MS, leaving work may be the right choice and 24% of respondents report they were unable to work at all due to the severity of their symptoms
  • However, people with MS who can work face significant challenges at work and one in two (50%) respondents indicated that they compromised their health by staying in jobs that did not meet their MS related needs. Nearly a third (31%) stated that they worked in a job that was below their skill level. Better workplace and social support is needed to enable people with MS to fulfil their potential at work
  • Over a quarter of respondents (26%) cited unmanageable workloads as a key workplace challenge while one in five (21%) had to contend with inflexibility over their working hours
  • People with MS are supported by their employers, but employers lack the knowledge and awareness of MS to deliver tailored support. Four in five respondents (79%) who are currently in work said that their employers were supportive regarding their MS. However, 48% cited a lack of employer knowledge of MS was a workplace challenge they encountered. Nearly half (45%) of those who left work stated that a better understanding of the condition by their employer would have enabled them to stay in employment.

Figure 5: Challenges with job characteristics

Graph showing challenges with job characteristics. Unmanageable workload - 26%, Lack of flexibility in working hours - 21%, Inadequate wages made it hard to cover living costs - 19%, Inadequate sick pay - 16%, Unpredictable hours and pay made it hard to cover living costs - 5%, Unpredictable shift patterns made it hard to attend medical appointments - 4%

Source: Work Foundation analysis of MS Society/Work Foundation survey, November 2024

Recommendations

The findings in this report suggests action in three areas:

  1. Make access to secure and flexible work standard practice
  2. Improve quality and access to in-work Government and employer support
  3. Ensure people with MS - whether in or out of work - have adequate social security support.

Read the full briefing here.

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