Here's what the survey revealed:
The survey indicated varying levels of awareness about MS Ireland among young people with MS, with 28.07% reporting substantial knowledge. Significantly, 50% of respondents were signposted to MS Ireland at the time of their diagnosis, but a substantial portion expressed a desire for such guidance, underlining the need for better collaboration with healthcare professionals.
Engagement and Channels: A majority of respondents engaged with MS Ireland within five years of diagnosis, with various channels like the website, social media, and community worker services being utilised. However, reasons for non-engagement included not perceiving MS as a priority and lack of awareness about available services.
Representation and Catering: Opinions were divided regarding the representation and catering to the 18-35 age group, with several feeling under-represented and under-catered for. Factors contributing to this sentiment included a perceived focus on an older age cohort and timing issues with events.
Challenges Faced: The survey identified numerous challenges faced by young people with MS, ranging from symptoms and access to services to barriers in work and education, public misunderstanding, and feelings of isolation.
Key Activities and Recommendations: Respondents suggested various activities for MS Ireland. These included social events, employment support, tailored information, and greater public awareness campaigns. Other recommendations included, public awareness campaigns, increasing representation in materials, developing tailored resources, enhancing collaboration with healthcare professionals, and expanding digital outreach efforts.
The insights gained from this survey will enable MS Ireland to refine its strategies and initiatives, ensuring that it remains responsive and supportive to the needs of young people in the MS community.