Monday February 08 2016 10:05 AM

What will the 2016 Campaign hold for the MS Community?

“Maybe?”

Please excuse the lack of a more thoughtful word to describe my doubt when I think of Ireland’s upcoming election.

I’m part of a 9,000 minds-strong community, yet we matter as if we were nil. The illness we all share, multiple sclerosis (MS), doesn’t seem to cause any wrinkles, overtime or have simple understanding in Dáil Éireann. We are still waiting for Labour’s “one key social justice issue” to be resolved as promised during the previous election campaign. Fine Gael also felt that using the recession as a legitimate reason to force extreme hardships on people with disabilities was an OK thing to do.

Were we too naïve? Too desperate? Too willing to wait around? Does the MS community really need to feel 32% less happy about their quality of life than the general population when they could have a better score were the government to support them more?

Public trust in the government or any political party for that matter at times dipped lower than it could go. Some of us thought, “Ah, sure, at least, the Dáil is undoing Fianna Fáil’s cronyism and uncontrolled spending and thinking.” However, when charities and organisations marched to Leinster House, stayed there for hours and days with debates based on values, integrity and determination, the Government’s reaction was either non-existent, small or just about enough to last a few weeks (until the media lost interest!).

Over the past five years, MS Ireland, the Neurological Alliance of Ireland (NAI) and the Disability Federation of Ireland (DFI) have continuously combined their efforts to bring some dignity to the 9,000-strong MS community. In their view, we unquestionably matter. But, despite the countless invisible hours they work behind the scenes, it seems as though the people that create and implement public policy, are not listening. 

Over the course of the 31st Dáil, people with MS didn’t matter that much. We’ve been used as an election gimmick before, so this time, we HAVE to ensure that our voices turn into actions.

Five years after the 2011-2015 National Neurorehabilitation Strategy, the neurological community is still living with a ticking time bomb under their beds, either placed there by their illness, or by the continued negligence by those in power. Needless to say, with that strategy still not implemented, nor acted upon, it remains a priority for people with MS and other neurological conditions in Ireland. 

Another high priority for the MS community is to see large investment in hospital and community-based neurology services. Those of us who have regular out-patient appointments to see neurologists will know the dismally small number of active neurologists in Ireland, and how long waiting times can be- Ireland has one of the highest rates of MS in the world with the lowest ratio of neurologists in Europe. Just as an example, and from my personal view, what logically-thinking person thinks it’s perfectly OK to send people with severe disabilities in their electrical wheelchairs (or any other form of mobility aid) along with their carers from as far as Donegal to Dublin for their neurological check-up? They travel for hours by car and train for a mere fifteen-minute check-up. Isn’t that proof enough that a substantial investment in hospital and community-based neurological services needs to happen? 

Also, 27% of people with MS had to stop working due to their illness, so employment retention and return to work in line with the Comprehensive Employment Strategy for People with Disabilities 2015-2024 is another high priority. When you know that 70% of people with MS who are working say it has limited their career potential, the government needs to gather that group of people and tap into their abilities and talent. Too many great minds are lost in that web of non-support while people could indeed create better lives for themselves and their families. 

Another key issue remains the never-ending medical card battle. The solution is so easy- if you have MS an automatic entitlement to a GP Visit Card for those on the Long Term Illness Scheme has to be created. Also, the cost of living with MS has to be included in medical card system applications. This has been an almost historical issue that seems to change from minister to minister, and from government to government.

So, even if you haven’t decided whom to vote for yet, why not ask your local representatives and national leaders to step up and pledge to take action. Vote for candidates who support people living with MS to live the lives they choose. Take a pledge and tell them what is on your mind and what would make the biggest difference to you. Tell them your region needs more support, more care and capacity so people are supported to live fulfilled lives, whether living with a chronic illness or not. 

And remember… we absolutely do matter.

References:

• Disabled people see promises constantly broken
• Promises, Commitments, and Delivery: Mid-Term Review of the Programme for Government
• Submission to The Department of Social Protection On the Youth Guarantee

Further reading 

If you want to read more of Willeke’s own blog, please check Ireland, Multiple Sclerosis & Me and Twitter