MS patients in UK say they lack support to stay, thrive at work
Half of workers surveyed say jobs have compromised health
Half of multiple sclerosis (MS) patients in the U.K. who work have compromised their health by staying in jobs that didn’t fully support their MS needs, and nearly a third are in roles below their skill levels.
That’s according to “No compromises: supporting people with MS to thrive in and out of work,” a joint report from the Work Foundation at Lancaster University and the MS Society UK. It was based on an online survey of 1,125 patients undertaken in 2024.
The report identified three key areas for action: making secure and flexible work the norm; improving support from both the government and the employers; and ensuring that people with MS have adequate access to social security support, regardless of whether they’re working.
“With the right support from Government and employers, many people with MS can continue to lead productive and fulfilling working lives,” Ben Harrison, director of the Work Foundation, said in a university press release. “Our research stresses the importance of employers proactively strengthening their understanding of the condition while ensuring that line managers are equipped to properly support colleagues with MS.”
MS causes damage to nerve cells in the brain and spinal cord. It can lead to problems with movement, vision, and cognition. Most people are diagnosed with MS in their 30s and 40s, their peak working years. MS is more common in women.
Commuting, lack of employer flexibility among barriers to success
The survey was aimed at understanding how people with MS experience life at the workplace after a diagnosis and to identify barriers to staying and progressing in their work. Researchers at the Work Foundation conducted the survey in collaboration with and funded by the MS Society.
Of the patients who responded to the survey in England, Scotland, and Wales, about two-thirds (67%) were aged 45-64, and most (75%) were women. Among women, nearly two-thirds (62%) were employed. For men, this proportion was smaller, at 44%.
Ninety-six percent of respondents said their MS had affected their ability to work in some way. For 24%, the symptoms were so severe that continuing to work wasn’t possible.
“Participants reported that symptoms of MS can make commuting, navigating workplace environments and completing certain tasks challenging,” the researchers wrote. “Managing the symptoms of MS … can itself lead to anxiety and depression, which can affect work patterns and the ability to concentrate.”
Those who could work reported challenges including unmanageable workloads (26%), inflexibility over their working hours (21%), and lack of workplace adaptations (21%). Fifty percent said they had left a job due to factors related to their MS.
Fifty percent said they stayed in jobs that compromised their health because they lacked support and faced financial pressure. Nearly a third (31%) said they were working in roles below their skill level, suggesting they weren’t being given the opportunity to fully use their knowledge.
While 79% of patients said their employers tried to support them, nearly half (45%) said their employers didn’t know enough about MS. This negatively affected their work lives, often leading them to leave work. Better understanding could have helped them stay, the report noted.
“Effective flexible working policies can make the difference between someone with MS feeling able to remain in work without compromising their health, or exiting the labour market altogether,” Harrison said. However, the report noted, the U.K. government plans to cut disability benefits by nearly £5 billion (about $6.8 billion).
“It’s critical that Government re-thinks its plans to cut back and limit access to these welfare payments, as doing so could actually lead to fewer people with conditions like MS feeling able to enter and remain in work in the future,” Harrison said.
Many MS patients “are leaving work before they want or need to, or are feeling forced to compromise their health due to financial pressures, said Ross Barrett, policy manager at the MS Society. “Everyone with MS deserves the opportunity to thrive at work and realise their full potential, but a lack of support from employers and the government is making this impossible.”
The Work Foundation is hosting an online event on MS and employment in the U.K. on June 3 to discuss new research on the employment experiences of people with MS. The one-hour event is free but requires registration.
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