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The Work Foundation

Being diagnosed with MS doesn’t mean you need to leave work

Authors: The Work Foundation Laura Weir, Head of Policy & Campaigns, MS Society

22 June 2011

The Work Foundation’s report, launched this week ( 21 June 2011) and supported by the MS Society, highlights several problems faced by people of working age in the UK who have MS.


The condition is most commonly diagnosed in people in their 20s and 30s. More than 75% of people with MS report that their condition has impacted on their employment and career opportunities and just under half of all people with MS are forced to retire early due to their condition.


Work is an important part of life for many- it can bring financial stability, a sense of purpose, achievement and social opportunities too. But for people with multiple sclerosis (MS) remaining in work can be a challenge. Many people who want to, and feel able to, remain in work but their employer makes it impossible for them to do so.    


‘Hidden’ fluctuating symptoms like problems with eyesight, severe fatigue, cognitive issues, pain and depression mean employers and colleagues can often underestimate the impact of the condition on an individual.


With reduced availability of social care and new stringent criteria on accessing out of work disability benefits, much of the financial burden of living with MS falls to the individual or their carer. 


Yet with the right support and early interventions from employers people with MS can lead full independent lives with a rewarding career. Validating this claim is the fact that 30% of people with MS who have a significant level of disability remain in employment.


Flexible working hours, scheduled work breaks with a designated place to rest and improved awareness of MS symptoms among colleagues are just some of the small steps that employers can take to make the working environment more manageable.


But it is not only employers who can help people with MS to remain in work. Holistic support is also needed; suitable and sustainable employment must be seen as a desired outcome across the full range of health, social care and welfare interventions.


For example, fatigue management programmes, adequate social care, and financial support through benefits like Disability Living Allowance or programmes like Access to Work are all likely to play a key role in preventing a person from leaving their job prematurely.


The MS Society provides a range of information and guidance to people who need support in informing their employer about their MS. 


We know that changes are unlikely to happen over night, but for people living the daily battle that can be life with MS, they cannot come soon enough. We hope to work closely with the government, employers, people with MS and others who support them as they take on this important challenge.


For support and advice call the MS Society’s helpline on 0808 800 8000.  

Comments in Chronological Order (Total 1 Comments)

Fatigue Causes

23 Sep 2011 4:29AM

I know two people with MS. One is in her 60s and has had MS for 20 years or so. The effects are primarily that she gets easily tired and that she stumbles and loses her grip on objects so they fall more often than what is common.

The other is in her 20s and has had MS for around 10 years. Early on the effect was limited to stumbling like she was slightly drunk, and she would sometimes be denied service in bars and restaurants because they thought she was drunk.
These days she is in a wheelchair and can't walk more than a few metres at a time.