Earlier this month, I traveled from Hampshire in England to Lisbon, Portugal to attend the EAN’s annual Congress representing the EMSP on behalf of EFNA. I helped on the The EFNA stand, chatting to people about the results of EFNA’s survey of young people with Neurological conditions. I was also invited to give a presentation about workability as a young person with MS.
I spoke about a few topics, but mostly I wanted to focus on working and workability for young people with a neurodegenerative condition.
I was 28 when I was diagnosed with relapsing remitting MS and had recently found out we were expecting our first child. It was a difficult time for me, but fortunately I was able to continue work, and life, in relative normality. I now have two little boys, aged 3 and 1. It’s hard work juggling work, a family and a chronic disease, but I am fortunate to have a lot of supportive family, without whom I would really struggle.
MS is often diagnosed during a person’s prime working years and so it’s really important for those with MS to understand ways in which they can adapt their workplace to enable them to stay in work for as long as it’s healthy to do so. I have a very understanding, and accommodating, employer and so I was fortunate to be able to make adjustments at work so I could continue to work. Few are as lucky as I am, did you know that in Europe between 58%-74% of people with MS are not at work? For many this is because of their disease symptoms making it impossible to work. But for some, perhaps a better understanding of adjustments that can be made would have meant they could continue to work. Also, a better understanding by employers of the value the MS-er could still bring to the workforce would certainly help.
I came to the EAN to assist EFNA, but I also came as a representative of the European MS Platform’s Young People’s Network. I first became involved with the EMSP when I attended a conference for MS-ers in Prague last November, called MS Sessions. It was extremely empowering and it drove me to get more involved with MS advocacy in my local area. I now volunteer with my local MS Society and hold regular meetings for other people with MS in my local area. I also volunteered to administer the Facebook page for my local MS Society. Empowering others to be the best advocates for their own disease has been really rewarding.
The EMSP is also working hard on helping people with MS to stay in work for as long as they feel able to. That is why EMSP and The Work Foundation have created a booklet for HCPs as part of the Ready for Work project, Guide for Healthcare Professionals which they hope to pilot soon in four European countries, and it offers some excellent advice and information for Healthcare Professionals to on how to have healthy work conversations with patients.
They have also developed The Practical Toolkit for Employers, which provides businesses with the tools and signposts to get support if they have people with MS in their workforce. It is a solution-focused document for both employer and person with MS so all involved can adapt and ensure the person can continue to work. Businesses can hold onto skilled employees and people stay in work.
I so enjoyed my time working with EFNA and I found the survey results both illuminating and often surprising. I hope to continue working with EFNA in the future and am so grateful to them for the opportunity to assist them at the EAN Congress 2018.