Neurons were firing brightly on last evening’s twitt chat! Once more, the EMSP and Emma Rogan took the conversation about multiple sclerosis and work to the social media agora. Last year they invited us to twitt chat about work with MS management issues (read more about it here). This time, they partnered with The Work Foundation at Lancaster University to bring to life a new project called “Ready for Work”. Read on to find out more!
CONTEXT AND CONCEPT
Their collaboration is focused on supporting young people with MS into employment, and in time making it a purpose for clinical care. The project emphasizes the important relationship between doctors, patients and employers and the individuals’ abilities to work and continue their careers in today’s european socio-economic context.
As Lead Coordinator of “Ready for Work”, Emma Rogan introduces the concept of “workability”, which describes the situation of doctors clinically discussing the issue of work with their MS patients.
Multiple sclerosis is “usually diagnosed during the prime working years of a person’s life, between the ages 20-40” (@WorkFoundation) and the impact on the individual’s life of not being able to work is far greater than one can think. Not to mention the huge amount it costs the state to keep all MSers on welfare alone. Which usually is only a temporary thing anyway.
WHAT WAS DISCUSSED?
The common enemy here is the social stigma associated with illness. People who suffer from MS might end up with mild to severe disabilities, and that scares employers as much as it does the MSers themselves. Both are afraid of losing something: one risks losing profit, the other his or her’s whole life. It’s basically the same need: the one to survive in today’s world.
People are usually afraid of what they either don’t know or don’t understand. They tend to reject that thing by default. Prejudice is deeply engraved for most individuals. The key to better understanding and less fearing MS is more awareness. Hopefully, as people talk more and more about this illness, they will understand it more and fear it less. They will care.
In this context, employers (as well as the general public) need to be educated about what multiple sclerosis really means for the individual and what it also means in terms of costs and gains for their businesses and society at a larger scale.
For one, having a workplace and a peer community to go to everyday brings more social connection, thus avoiding social isolation that can deeply affect the quality of life of a person with MS. It also helps with gaining and sustaining financial independence and creativity into one’s life. Being involved in various projects and tasks gets one’s mind off the illness, whilst providing financial security.
Keeping MSers employed can actually cut costs and increase revenue for businesses, as they are still highly skilled, love their jobs and want to be of use and contribute to their workplace in spite of being diagnosed with a chronic and possibly debilitating disease. Their dedication and willingness to keep their jobs actually shows they are loyal, courageous and have lots of willpower to make it work. These are the kind of people every business should want working for them.
This is where the EMSP Toolkit for Employers can help a lot in understanding what needs to be done and managed when employing a person who has multiple sclerosis. At its very basic, this situation only needs minor adjustments like: flexible hours and the ability to work remotely / from home, cooling devices in the summer and a place to rest during lunch break.
Think of an MSer at work as if it were a smartphone: it does all this complex tasks, it solves lots of issues you might have, and after a while it needs recharging; after the battery is full, it can resume its tasks with the same excellent results.
"The relationship between doctor and patient also has to be an open and inclusive one" (@eumsplatform), to make work a crucial discussion topic during regular check-ups. Career and staying at work are essential things to all young MSers.
My personal belief is that a holistic approach to MS treatment is now needed. Medical, emotional, lifestyle and career factors and their balance make an individual a part of society. The collaboration between doctors, employers and patients is crucial.
Also, a good starting point would be a clinical test result to support one’s working skills and abilities. A medical certification that he or she is able to work within certain conditions and environments. Helping match the skills and career aspirations of young MSers to the demands of their work, will hopefully ensure access to good quality work and minimize the underutilization of their skills at the workplace (@eumsplatform).
On top of that, training the HR departments (where applicable) would be more than useful (@emmabear88), as oftentimes, MSers are afraid of disclosing their illness because of prejudice, of being seen as less capable and even of getting fired.
On the long run, the more cohesive a society is, the more it can withstand its hardships. So, in conclusion, the more we raise awareness and advocate for inclusion of all people in the workforce, the more diverse and powerful our societies will be.
Humans are social animals. We can’t survive so well on our own. A business needs skilled individuals to get things going forward. As a tribe thousands of years ago, it needs skills to evolve. Think about it: what happens if the right skills disappear when you fire an MSer? Just think about it!
CONCLUSIONS. WHERE TO NOW?
Support the “Ready for Work” Project. Spread the word. Use the EMSP Employee Toolkit to raise awareness and continuously educate.
And last but not least, join the European Multiple Sclerosis Platform (@eumsplatform) and Emma Rogan (@emmadragon) once more on the 12-13th of March, as she takes over their Twitter page for an in-depth discussion on brain health, work and related issues.
See you there! (or read you there!)
(Read the whole twitt chat here, #MSWorkability)
As always, wishing you the best,
Alexandra
