‘I want to believe that we can make this better’ - Limerick campaigner calls for more MS support

A YOUNG man living with Multiple Sclerosis (MS) is calling for increased supports for those affected by the condition in Limerick.

Kevin Saude (33) arrived in Ireland 13 years ago, and quickly became ingrained in the local community in Garryowen where he worked as a security guard and a fitness instructor.

In 2015, he returned to his native homeland of France to scatter the ashes of his mother who had died of an acute form of MS.

As little as two days later, he began to experience strange symptoms and had a stroke, which led to a diagnosis of the very same debilitating disease that afflicted his mother for most of his childhood.

“I didn’t understand what my mam was dealing with. Nobody ever took the time to talk to me about the pain and difficulties she was experiencing. Why she couldn’t collect me from school or drive, why she was always tired.

“These things are prerogatives of health nurses to talk to the family about. Back then it would have saved my relationship with her.

“I would have had a better understanding of what she was going through and we wouldn’t have become so estranged,” the UL Politics PhD student admitted.

Despite the enormous support shown by his local community in Limerick at the time, in which a special run was organised to pay for his initial treatment in France, Kevin lacks any confidence in the ability of local health service providers to deliver adequate support for him and others living with MS in Limerick.

Kevin is working with the Neurological Alliance of Ireland (NAI) as a patient representative, and along with his own two year wait for a “meaningful appointment” with a neurologist at UHL, he has heard some trying testimonies of others who are unable to avail of the vital arm of support provided by MS health nurses.

The NAI, as part of their newly-launched Patients Deserve Better campaign, are seeking investment to tackle the serious shortage of nurse specialists in neurology in Limerick.

The campaign, which analyses critical gaps in staffing in neurology services in Limerick, has identified a shortfall of 8 specialist nurses at University Hospital Limerick (UHL).

“I have two perspectives on the importance of health nurses. The support provided both to the children of family members with MS and those patients with the condition themselves.

“There are three people connected with my care approach: my GP, my MS nurse and my neurologist. Health nurses are needed to fill the gaps within the neurology department, who are overwhelmed already,” he added.

Kevin availed of a “formidable multi-disciplinary team” in France during the period when he first suffered from a stroke, which allowed him to regain use of his arms and legs again. During this time, he received invaluable support and advice from MS nurses back home.

Asserting that a MS diagnosis is no longer a death sentence, he is pushing for an increase from three MS nurses to the recommended 11 at UHL, in the hope that “we can take it upon ourselves and make things better for those living with neurological conditions in Limerick.”

Stress, he added, is the main exacerbator of pain for those living with MS. With over 24,000 people waiting for physical appointments, he stressed that virtual appointments “just doesn’t cut it”, as he and others living with the condition have not been able to tackle new symptoms head on.

“Despite the leaps and bounds made by MS medication over the last 15 years, there is a serious need for alleviating stress in patients.

“I want to believe that we can make this better. I adore Ireland, but I can’t trust the HSE to take care of me with my condition in my old age, as relapses are the worst thing for those with MS.”