EMSP Addresses MEP Interest Group on Critical MS Challenges in Europe

Elisabeth Kasilingam, CEO of the European Multiple Sclerosis Platform (EMSP), spoke at the MEP Interest Group on Brain Health and Neurological Conditions, hosted by the European Federation of Neurological Associations (EFNA). Her address highlighted the urgent need for action to improve the lives of people living with Multiple Sclerosis (MS) and other neurological conditions across Europe. 

A Call for Change 

Kasilingam presented the findings of the  MS Barometer, a comprehensive survey analysing Multiple Sclerosis (MS) care across 35 countries. The results highlight significant disparities in access to appropriate healthcare, specialised medical professionals and social support services for people living with MS throughout Europe. Only seven countries boast employment rates above 50% for people with the condition. Additionally, critical barriers exist for a fully participative and inclusive contribution to society, including: 

• Limited financial support for essential home adaptations

• A lack of standardised caregiver support systems across the EU

• Significant variations in disability rights between member states

Legislative Shortcomings 

Current disability legislation often falls short in key areas: 

• Overlooking the complexities of MS: Existing laws primarily focus on physical limitations, neglecting the multifaceted nature of neurodegenerative conditions

• Ignoring fluctuations in MS: One-time evaluations fail to account for the disease’s fluctuating nature, leaving individuals without necessary support during symptom flares

• Neglecting invisible symptoms: Standard assessments often miss critical “invisible” symptoms like chronic pain and fatigue, which deeply impact quality of life

Opening the Workplace Dialogue 

Kasilingam emphasised the need for practical tools that empower people with MS to initiate conversations about workplace adaptations. Additionally, clear guidance for businesses on building inclusive recruitment and return-to-work policies is crucial. 

Be Part of the Solution 

On International Day of Persons with Disabilities, EMSP joined forces with the European Disability Forum (EDF) and over 50 other organisations to urge the new EU Equality Commissioner, Hadja Lahbib, to prioritise disability rights. In an open letter to the Commissioner, they highlighted a critical gap in the EU’s disability rights agenda, warning that the absence of a planned strategy review risks undermining significant progress made thus far.

The joint initiative specifically addresses concerns about the EU’s Disability Rights Strategy 2021-2030. While the Strategy has achieved notable successes, including the implementation of the European Disability Card law, its detailed action plan only extends through 2023. Without an updated roadmap, Europe faces the risk of a five-year stagnation in disability rights advancement. This collective advocacy effort represents a crucial step towards ensuring continued progress in disability rights and maintaining momentum for improved quality of life for all people with disabilities, including those living with Multiple Sclerosis.

Read the joint letter here.