People with MS and other fluctuating health conditions are often forced to quit their jobs when they want to work
Plans to cut health-related benefits in the UK continue to give the government political grief – as well as being a huge worry for claimants. Underpinning the controversy are government plans to move more people into work with a long-term ambition of 80% employment.
But cutting welfare costs is a blunt and unhelpful way to face the challenge of increasing employment among people with long-term health conditions.
For people with fluctuating and often invisible conditions such as multiple sclerosis (MS), welfare and work are not opposed. They are usually part of the same life journey – one that is rarely linear and requires systems and supports that are flexible, not punitive.
This was the focus of a recent study led by my research colleague Aman Navani and the MS Society. It is a major UK survey of people with MS with more than 1,100 respondents, and highlights systemic failures in workplace support and welfare systems.
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Because of its fluctuating nature, MS can act as an important case study to understand how work should accommodate people’s evolving health needs. It also offers lessons that are relevant to a wide array of other conditions.
Cases of MS are rising globally. Around 150,000 people in the UK live with the condition, which affects the central nervous system and causes pain, mobility problems, cognitive issues and fatigue.
Women are more likely to have MS, which is usually diagnosed in people in their 30s or 40s. These, of course, are peak working years.
The vast majority of people with MS (96%) who participated in our study reported that their condition has affected their ability to work. This is because MS can make commuting and navigating workplace environments challenging, and physical and mental health impacts often overlap.
Managing symptoms such as cognitive changes, pain and restricted mobility can contribute to anxiety and depression. All of these things put additional strain on the working lives of those affected.
For a quarter of respondents (24%), MS had such a severe effect that they felt unable to work at all. Worryingly, one in two people said they have compromised their health by staying in a job.
For many, leaving work is the only solution they can see. More than one-quarter (26%) cited unmanageable workloads, 19% could not afford to stay in work due to low pay, 20% lacked flexible hours, and for 22% the flexibility they were offered did not meet their needs.
Just 8% said their employer helped them adapt their job to suit their health, and only 2% had progression opportunities tailored to their condition. But nearly half (45%) of those who left work said they could have stayed if their employer had understood their condition better.
Almost half (46%) of respondents who were in work had used the personal independence payment (Pip) as a lifeline. This is an allowance that helps people with the extra living costs associated with having a disability. Under the government’s plans, conditions will be tightened for new claimants.
Designing better jobs
Living with a fluctuating condition requires constant adaptation, from coping with exhaustion to managing the extra time and cost of daily activities. As such, the way jobs are designed matters.
A government report has said that one-quarter of those who are out of work and claiming health and disability benefits might be able to work if they could do so from home.
The rise of remote and hybrid work has indeed been a lifeline for some disabled workers. A recent major study of people who are classified as disabled highlights just how vital this change has been for them: 85% said remote or hybrid work was essential or very important when job hunting, and 79% wouldn’t apply for roles without it.
Among those working fully remotely, 64% said their physical health improved. Homeworking was valued by those with fluctuating conditions such as MS, and for disabled women and carers in particular, full-time homeworking was their preference.
But these gains are precarious. Growth in hybrid roles has stalled and some employers are grabbing headlines with “return-to-office” mandates even at the risk of losing key members of their workforce.
Nearly one in four working-age people in the UK are disabled. Work and welfare must be designed from the perspective of this growing and diverse cohort – ensuring financial security for people with health conditions, both in work and out of work.
Expanding and protecting access to secure and flexible jobs is key, including remote and hybrid roles, baking these models into more sectors of the economy. The government could lead by example with public sector workers, and protect jobs from knee-jerk employer mandates.
In January this year, only 3.8% of vacancies on the Department for Work and Pensions jobs portal included an option for hybrid or remote work.
Finally, it’s vital to improve job design and in-work support, with effective occupational health systems, consultation with workforces, normalising shorter working weeks and time off.
This would enable people with fluctuating conditions to attend appointments, recuperate and even take career breaks without harming their careers. For this, the UK needs a benefits system that supports movement in and out of work, avoiding financial cliff edges.
Too many people with MS and similar conditions who can and want to work are forced to leave jobs early due to inadequate support. They face a trade-off between progressing their working life and managing their health. The challenge for government and employers now is to remove this tension.
Alice Martin works for the Work Foundation think tank at Lancaster University, which received funding from MS Society to conduct the research.