MSunderstood Café and Roadshow Gives Customers a Taste of Living with Multiple Sclerosis (MS)
In March 2018, MS Ireland opened the MSUnderstood Café in the heart of Dublin, inviting members of the public in to experience a small taste of the challenges people living with MS may experience on a daily basis. The pop-up café, created in partnership with Roche, was designed to be a challenging experience for visitors, with a simulated environment created with people with MS to ensure all aspects of the café were as true to life as possible.
Following a hugely positive response to the initial pop-up, the café experience took to the road with the MSUnderstood Bus, raising further awareness of the impact of MS all across Ireland. A ten-day Irish tour saw us visit Tipperary, Clare, Limerick, Cork, Wexford, Wicklow and Dublin. Members of the public and politicians in each locality joined us to experience the set-up and add their voices to calls for better access to medicines for people living with MS.
This campaign utilized the PatientsDeserveBetter.ie website to facilitate those affected by MS to demand quick and better access to new and effective treatments.
Ava Battles, Chief Executive, MS Ireland said, “MS Ireland believes that people with MS should have access to the right treatment at the right time. This may seem like a very basic demand, and one that it would be hard to refuse, but the truth is that this is not the situation for many people in Ireland today. We hope that Irish politicians and policy makers will realise how crucial speedy access to treatment is and change our market access system without delay.”
Pierre-Alain Delley, former General Manager, Roche Products (Ireland) Ltd, said, “People with MS deserve quick access to medicine, yet in Ireland we face some of the worst access delays in Western Europe. The State must create a system that is transparent, reliable and sustainable. Most importantly, it must give patients rapid access to new medicines, comparable to other countries in Western Europe. By working together we can improve the current access system and ensure everyone gets the treatment they need.”
More than 9,000 people in Ireland are living with Multiple Sclerosis. This progressive, neurological condition of the brain and spinal cord (central nervous system) is the most common disabling neurological disease affecting young adults in Ireland. MS symptoms or attacks include impaired mobility and vision, severe fatigue and cognitive difficulties. There is no known cause or cure for the condition.13