Half UK workers living with MS felt forced to stay in jobs that made their MS worse

These findings are included in a joint report: No compromises: supporting people with MS to thrive in and out of work. 

Read the full report on work and MS 

Research shows challenges people with MS face in work

We know that for many people with MS, leaving work is the right thing to do. And we think people should be supported to leave work at the right time for them. But others leave work because they don’t get enough support.

The study shows: 

• half (50%) have left a job because of factors relating to their MS. Often this is before they want or need to.
• half (50%) of the people who responded said a lack of support and financial pressures led them to stay in a job that compromised their health.
• a third (31%) of people with MS currently in work said they work in a job below their skill level - missing out on opportunities to use their skills and knowledge.
• a quarter of people with MS who left work (28%) said better government support – like access to improved benefits – would have helped them to stay in work.
• nearly a third (26%) said better employee benefits, including occupational sick pay, would have supported them to stay in the workplace.
• nearly half (45%) of people who left work said that if their employers understood MS, they could have stayed in work. 
• 41% said proper implementation of reasonable workplace adjustments – like working from home or allowing more frequent breaks – would have helped them stay in work.
• four in ten (41%) people with MS in work get PIP, often citing how they use it to help them stay in work.

Sarah relies on PIP to work part time 

We spoke to Sarah Martin, a civil servant from Ramsbottom. She lives with relapsing MS. Her employers have been very supportive, making reasonable adjustments like allowing her to work part time.  

But she relies on Personal Independence Payment (PIP) to help manage her living costs. She’s worried the government’s plans to cut PIP will have a negative impact on her working life. 

Sarah says:  

"My main MS symptoms are intense pain, fatigue and problems with movement. I had a major relapse a couple of years ago. Since then I’ve been claiming PIP to help with my costs. Receiving PIP means that I can afford to work part time and better manage my symptoms. 

"In my assessment, I didn’t receive more than two points for any Daily Living activity. This means that under the new rules I could lose out on my Daily Living allowance when I get reassessed.  

"If this happens, I might have to go back to work full time. It would put me under strain and just make all my symptoms worse. It would mean I’d have to take more time off sick, and it would become a vicious cycle." 

Calling for a review of the social security system 

Ross Barrett, our Policy Manager, says:  

"This stark new research shows many people with MS are leaving work before they want or need to. Or they feel forced to compromise their health due to financial pressures. 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. 

"Living with MS can be debilitating, exhausting and unpredictable – not to mention expensive. But access to PIP allows people to meet their extra costs. Including visits from carers to help with things like washing, cooking and getting to work in the morning.  

"We’re calling on the UK Government to rethink and reverse their proposed welfare cuts. And focus on conducting a full review of PIP and the wider social security system. We need the system to better support people with MS in and out of work." 

Advocating for change 

This report shows we urgently need a review of the social security system. It also highlights the importance of flexible working. And that high quality government and employer support like the Access to Work scheme are vital. The government needs to understand how to support people living with MS to thrive in their careers.  

Join us for an online webinar on Tuesday 3 June. Hosted in collaboration with the Work Foundation, we’ll explore this research in-depth.  

Register for our online webinar on Eventbrite

We’ll take a closer look at the employment experiences of people living with MS. And how we’ll be advocating for change so employers and the government can better support people with MS.