Improving ‘Workability’ for MS Patients: A European Point of View

Improving ‘Workability’ for MS Patients: A European Point of View

MS_Wire_Ed_Tobias
You probably talk about multiple sclerosis (MS) symptoms, drugs and therapies when you meet with your neurologist, but I’ll bet that most people don’t talk very much about working. Being able to work, and continuing to hold down a job, is important. I see concerns about this all the time on the online forums where we MS patients hang out. Work should be a part of that medical discussion.

In Europe, two organizations have teamed up to encourage medical providers to speak with their MS patients about working and their jobs, and they’ve created a program help them do that. The Work Foundation and the European Multiple Sclerosis Platform (EMSP) call it “Promoting Positive Work Outcomes for Europeans with MS,” (and I’m sure they won’t mind if this American spreads the word outside of the EU). The groups believe that supporting people in their working lives — something they call “workability” — should become a priority outcome of clinical care. The program focuses on four areas:

  • The work-focused nature of conversations between clinicians and people living with MS.
  • The challenges and barriers faced by people living with MS who wish to find jobs, keep them or return to work.
  • The quality of jobs available to people with MS and the practical steps employers can take to create fulfilling work.
  • The “workability” status, which includes economic, clinical and social benefits for wider society, including healthcare systems, small and big employers, and people with MS as well as their careers.

Talking about workability

An important aspect of this program is getting doctors and others who treat MS to talk with their patients about workability. The coalition’s guide is called “Why and how should HCPs talk to people with MS about work?” and it starts out: “Many people with MS would like to work and see it as a valuable part of their recovery. But they face a number of health and social barriers to achieving this ambition.”

The booklet reviews subjects such as why it’s important for healthcare professionals to talk with their MS patients about work, how to manage their symptoms on the job, and when and how to disclose an MS diagnosis to an employer. Though the guide is designed for medical professionals, it’s also useful for MS patients to read. It also contains lots of facts and conversation-starters.

The working numbers aren’t good

Among those facts: In Europe only 26 to 42 percent of MS patients are working, 60 to 80 percent lose their jobs within 15 years of the onset of MS, up to a third retire early and an estimated 17 percent get fired by their employers. I haven’t been able to locate comparable figures for the United States or elsewhere, but I have to believe they’re no better. Obviously, there’s a need for medical professionals to include a discussion, and suggestions, about how MS patients can handle this “workability” problem in their treatment plans.

Do you have a “workability” experience or suggestion? Please share it in a comment. The more we talk about it, the more we can improve how we all fare in the workplace. And please visit my personal blog at www.themswire.com.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

5 comments

  1. Christina says:

    Hi Ed, thanks for your post. Very interesting indeed. I’m curious to read more in the booklet on when and how you have to disclose your disability to your employer. I’ve been diagnosed with RRMS in 2012 but continued to work until mid-2014 when I became a freelance translator. That’s not a bad setup for an MSer since you can organise your own time and, for example, can easily schedule doctor’s appointments without getting angry faces from your coworkers. I would like to go back into full-time employment though, as I feel I am still physically and mentally able. When I do, the challenge will be to strike a healthy work-life-balance and possibly discuss ways to work around my needs with my future employer.

  2. Chantel says:

    I agree that this is an important piece of communication between primary care physician, neurologist and patient. Workability is a detrimental factor of many relapse symptoms (permanent and symptomatic) along with medicinal side-effects. I have been struggling to gain a solid understanding of my limits at work. I work in Marketing and my creativity must always be on which is extremely taxing on my brain. There are days where fatigue consumes me and I can barely string three words together, but I must provide for a family of five on my own—so the show must go on!

    • Ed Tobias says:

      Hi Chantel,

      I hear you. I spent 40+ years working in broadcast news, 32 of those years with the broadcast division of the Associated Press in Washington, DC. I know about stress and fatigue. A couple of things helped me. First, as much as possible I tried to avoid having to work during the low-point in my day (4pm – 7pm). Not always possible in the news media, of course, but most of my career was in management and that allowed some flexibility. Also, I used (and still use) Provigil to help offset the fatigue. Finally, I try to exercise when possible. I don’t know where you’d find the time but I found that even 15 minutes of resistance exercise, or swimming, a couple of times a week helps lessen my fatigue.

      Ed

    • Tamara Sellman says:

      Chantel, I also work in a creative career, and can truly relate to the challenge of squeezing my brain for every last idea or word, especially near the end of the day when I’ve generated a lot of original material. Making sure I get a full 8 hours+ of sleep at night is a big plus, as is working out of my home. I can’t imagine how exhausting an additional commute to a job would be, and what kind of MS tax I would come to pay as a result.

  3. Tamara Sellman says:

    It’s a tough situation for MDs, because they don’t feel they are in a position to tell you how to go about your life.

    I was working in a sleep laboratory (overnight shifts) when I was diagnosed, but later stepped away from that work and carved out a new career path with daytime hours because the circadian disruptions were wiping me out.

    When I told my neuro, she practically jumped for joy. “I can’t tell you what to do, but I knew you loved that work even though I knew it would put you at risk for relapse.”

    I have a caring, supportive neuro and don’t hold that against her. Maybe part of the equation comes when we, as patients, push that envelope in the doctor’s direction, giving them permission to weigh in on what they think.

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