MS Ireland "My MS My Needs" survey highlights the needs and experiences of people living with Multiple Sclerosis (MS) in Ireland. This pivotal research, which builds on a similar survey conducted in 2016, provides critical insights into the challenges faced by the MS community and offers evidence-based recommendations to enhance support and services.
Ava Battles, CEO of MS Ireland, expressed her gratitude to all survey participants: "We sincerely thank everyone who took the time to share their experiences. This survey provides invaluable insights that will guide our advocacy efforts and service improvements, ensuring that we continue to meet the evolving needs of the MS community in Ireland.
“We believe these findings will drive positive changes for those living with MS in Ireland. The detailed insights from the “My MS My Needs” survey provide a clear roadmap for addressing the gaps in care and support, ensuring that every individual with MS can access the necessary resources and services”.
Key Findings
The survey, which gathered responses from over 900 people with MS (PwMS), revealed significant insights into the diverse experiences and needs within our community:
- Impact on Daily Life: A striking 91% of respondents reported that MS affects their daily lives, with 31% indicating a substantial impact. This underscores the need for continuous support and tailored services.
- Healthcare Access: While access to treatments has improved since 2016, many PwMS still face challenges in accessing essential healthcare services, including neurology, physiotherapy, and psychological support. Notably, 24% of respondents expressed an unmet need for physiotherapy, and 31% highlighted the need for better psychological support.
- Employment and Financial Stability: The survey revealed that 28% of PwMS are unemployed, a significantly higher rate than the general population. Fatigue and other MS-related symptoms were commonly cited as reasons for changes in employment status. One-third have had to change their employment status due to MS-related issues. 48% are employed, with 29% working full-time.
- Financial Situation: 20% report struggling financially.
- Support Services: There is a notable need for enhanced support services, particularly for psychological support (31%) and physiotherapy (24%).
- Regional Disparities: The survey also highlighted regional disparities in access to services. PwMS living outside of Leinster face greater challenges in accessing healthcare and support services, emphasising the need for equitable service distribution across all regions.
MS Ireland Recommendations
Based on the survey findings, MS Ireland has developed ten key recommendations to improve support and services for the MS community:
- Enhance Accessibility of Services: Address regional variations in access to neurology services and reduce waiting times for appointments.
- Improve Information Dissemination: Develop comprehensive information packs about services, entitlements, and treatments.
- Support Medical Card Application Process: Advocate for a streamlined process considering the additional financial burdens imposed by MS.
- Review Housing Adaptation Support Systems: Ensure housing adaptation grants meet the needs of PwMS.
- Increase Support for Caregivers: Provide better support for caregivers, including access to paid home care and respite care.
- Expand Access to Psychological Support: Recognise the high prevalence of depression and anxiety among PwMS and promote access to emotional support services.
- Continue Efforts to Increase Physiotherapy Services: Build on the success of online physiotherapy services and support the rollout of community neurorehabilitation teams.
- Enhance Financial Support Accessibility: Address challenges in accessing financial supports to meet the needs of PwMS effectively.
- Advocate for Employment Support: Promote reasonable workplace accommodations and greater state support for employed PwMS.
- Continue Improving MS Ireland Services: Consider community feedback to enhance existing services and explore new avenues for support.
Survey Highlights:
Challenges of MS: Respondents highlighted a range of symptoms and practical needs, with the most frequent challenges being fatigue, mobility issues and cognitive difficulties. Psychological and social impacts, such as mental health concerns and fears for the future were also significant.
MS Treatment: The survey found that 79% of respondents are currently on a Disease Modifying Treatment (DMT), a slight increase from 75% in 2016.
Care and Support Needs:
- Family Support: 52% receive support from family or friends, with a significant portion (35%) needing more than 31 hours of care per week.
- Financial Support for Caregivers: Only 22% of family caregivers receive a carer’s allowance, although this is an improvement from 12% in 2016.
Healthcare Engagement:
- Neurology Services: 83% attended a neurology clinic in the past year, with 19% waiting over six months for an appointment.
- Neurorehabilitation: A dramatic decline in service usage, with only 2% accessing neurorehabilitation compared to 25% in 2016.
MS Ireland’s Commitment: The findings underscore the urgent need for improved service provisions and greater awareness of available supports. MS Ireland remains dedicated to:
- Empowering the public with evidence-based insights.
- Highlighting areas for improvement in service provision.
- Showcasing our crucial role in advocacy and support planning.
Download full report from My MS My Needs here: https://www.ms-society.ie/sites/default/files/2024-05/My%20MS%20My%20Needs%20-%20Final%2017.05.pdf