Hope for change: Campaign grows for MS support worker to aid over 300 people in Leitrim and Sligo

A well-attended public meeting took place on Friday, September 19 at the Radisson Blu Hotel in Sligo to highlight the urgent need for a community support worker for people living with Multiple Sclerosis (MS) in Sligo and Leitrim.

Currently, Sligo and Leitrim are the only counties in Ireland without access to such a service. MS Ireland, the national MS organisation, is campaigning to change this, alongside the more than 300 people in the region living with MS.

The meeting featured harrowing and powerful testimonies from people with MS, as well as information from MS Ireland on the vital role of community support workers. The MS Ireland Leitrim branch was also in attendance.

Local politicians including Martin Kenny TD, Frank Feighan TD, Senator Nessa Cosgrove, and councillors Brendan Barry, Gary Prior, Paddy O’Rourke, and Paddy Farrell attended the meeting in support.

MS Ireland is seeking €72,997.56 to fund one full-time community support worker for Sligo and Leitrim.

Chief Executive of MS Ireland, Ava Battles, said the organisation’s mission is to “enable and empower people affected by MS to live the life of their choice, to the fullest potential.”

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Addressing the absence of a community support worker in the region, Ms Battles said: “What’s happening here in Sligo and Leitrim is not appropriate. The reality is we have 19 community workers throughout Ireland, and Sligo and Leitrim is the only place where we do not have the community work service.”

Aoife Lambe, National Services Manager for MS Ireland, outlined the essential work community support workers provide. “The person responds to the person with MS, provides information support on issues such as psychological support, social welfare, medical care applications, employment and education,” she explained.

Their role also includes connecting people with other healthcare professionals and services, as well as facilitating networking, peer support, and educational programmes.

Among those who spoke was Louise Power, who lives with MS in Mayo, where she has access to a community support worker. She described how the service transformed her life. “In recent times, I've accepted my diagnosis, I can’t change it but I can do everything in my power to advocate for those with MS which is why I’m here today. Please, if there's one thing you can do for us today, is support our business case and grant us the funding we desperately, desperately need for those living in Sligo and Leitrim,” she said.

Another testimony came from Linda Barry McManus of Sligo, who recalled accessing services in Donegal after being diagnosed more than 25 years ago. “Because I was able to use some community workers’ services in Donegal when I was first diagnosed, I know the value of those supports, especially when newly diagnosed,” she said.

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“I also know the heartbreak of seeing those services available all over Ireland but not in Sligo. It is painful that just because of where I live, I cannot access them. I really hope we can get approval at last in the new budget.”

Leitrim man Mark Early also spoke about the impact such a service would have. “In the 24 counties across this country, people with MS have access to vital supports such as emotional counseling, physiotherapy, employment advice and more – but not here; not in Sligo and not in Leitrim.

“People with MS in Sligo and Leitrim deserve the same support as every other county in Ireland, nothing more and nothing less.”

The message from people living with MS was clear: the situation is intolerable, particularly as the north west has the highest incidence of MS in the country yet remains neglected.

Frank Feighan TD for Sligo-Leitrim said he had spoken with the Minister about the need for the post and offered his “absolute support,” adding, “I hope we will have a successful result in the coming weeks and months.”

Martin Kenny TD also pledged support, saying, “It’s a tiny amount of money that’s needed to provide an absolute essential service. It’s not just the people who are dealing with it now, it’s the future, there’s going to be more people and they will all need this service.” He added that pressure will be put on the Minister by other Oireachtas members to deliver this.

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Cllr Paddy O’Rourke described the situation as “inexplicable and inexcusable,” noting that from his discussions with Oireachtas members, there “does seem to be some light at the end of the tunnel.”

The meeting closed with a shared hope that funding will finally be secured, ensuring that people with MS in Sligo and Leitrim have the same access to support services as those in other parts of the country, a small ask for something that would bring a profound change to the lives of hundreds in the two counties.

MS Ireland Leitrim Branch with Martin Kenny TD, Cllr Gary Prior and Cllr Brendan Barry