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MS in the Workplace

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Friday July 12 2013 12:51 PM

On Tuesday, 9th July at a meeting about Neurodegenerative Diseases and Employment in the European Parliament building, MEPs and business leaders were urged to “get creative” by tapping into the potential of people in Europe with neurodegenerative diseases.

Austrian MEP, Angelika Werthmann, hosted the breakfast meeting to discuss and plan what can be done by EU policy makers to ensure people stay as long as possible in the workplace. The European MS Platform, along with Alzheimers Europe and the European Parkinsons Disease Association, presented at the event. On Tuesday, Ms. Werthmann pledged to table a written declaration this year aimed at improving the quality of life of people living with neurological conditions in Europe.

Shana Pezaro, a young woman with MS, gave a presentation on all aspects of emplyment. She completed her college degree and went to work in television production. Due to the severe and fluctuating symptoms, including falling over, severe fatigue and kidney problems, she took the decision to set up her owne business. This would allow for flexibility, allowing her to manage her health. She set up a children’s stage school and theatrical agency. Shana asked the goup, “How much talent do we risk wasting if we continue with business as usual? And how much money does that cost?”

With approximately 70% of people with MS diagnosed at prime working age (20 to 40 years of age),  most people with MS are in employment at the time of diagnosis. Emma Rogan of MS Ireland and EMSP said, “It is all about possibilities and dreams. The financial security of  work gives us options and allows us to plan for our future. Events such as this are about informing and providing solutions so people with MS can remain as active as possible throughout their lives.” 


People with MS need support in their work, flexibility to allow them to remain employed and support if they change or need to leave work entirely. Representing the needs of people with MS in Europe is fundamental to the work of the European MS Platform, of which MS Ireland is a member. We would like thank the Irish MEPs who attended on the day.
 


If you have had any experiences you would like to share about your employment situation, please get in contact with Emma emmar@ms-society.ie
 

For further information on the day:

http://www.theparliament.com/latest-news/article/newsarticle/eu-urged-to-tackle-workplace-challenges-of-neurodegenerative-diseases/#.Ud7ScqzURrA

http://www.euractiv.com/health/attract-keep-talent-multiple-scl-analysis-529150

Author: MS Ireland

Tags: ms, ireland, neurodegenerativediseases, employment, angelikawerthmann

Comments

Ash

Monday July 15 2013 14:13

I think the most frustrating thing about the lack of support in terms of working with MS is the welfare system. I work full time but when I relapse I could be out of work for anything from one week to 8 weeks.
The first three days are never covered by illness benefit so if I just need a day or two, or a course of IV steroids, I end up out of pocket with no recourse.
If it's longer then I get illness benefit but because I have a mortgage, I'm left high and dry. For the sake of a few weeks it's not worth trying to go interest only with the bank and claim mortgage interest supplement.
I looked into going part time and my employers were supportive. But again, there weren't many options open to me. Family Income Supplement would go a small way towards helping me if I reduced my hours. But really, I would need to be on something like Partial Capacity Benefit......which I could only get if I were on illness benefit for 6 months or more. But I don't want or need to be out of work for that long.
In fact, the small amount of FIS I had been getting was stopped while I wait for my disability allowance to be assessed. The waiting times for that are 8+ months. So not only am I low income but now that I have a disability, the government are making it even more difficult for me financially.

I tend to have to drag myself into work just to keep a roof over my and my childs heads. If I need IV steroids I schedule them for the morning and then rush back to work as I can't afford to take full days.
I get 5 paid sick days by my employer per year. This year those were gone by the end of January because of a relapse.

It's so disheartening trying to stay in work with no support. My employers are very accommodating and would do anything to make things easier but financially as a single mother with a mortgage, I HAVE to work. Sick or not. I'm doing reasonably ok health wise but am terrified what will happen if I get a really bad relapse.

Jean

Friday July 26 2013 10:00

It would be really helpful if there was information made available automatically when MS patients go on illness benefit.

I was lucky in that my employer paid those three days that I lost before SW kicked in.
However, there came the day when I needed
info on Disability etc as I was on half-pay (including Illness Benefit) and Mortgage letters become veryu menacing very quickly never mind extra costs if bills unpaid etc.

Been there Ash.......
I enjoyed work for a long time and hope you do too.

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