Unveiling the Invisible in Neurological Conditions: A Working Visit to the European Parliament

Neurological conditions affect millions across the globe, yet many of their most pressing issues remain invisible to society at large.

This was the focus of an important working visit at the European Parliament organised by the European Federation of Neurological Associations (EFNA) in collaboration with the European Parliament, where representatives from NGOs, patient advocacy groups, and public administration came together to shed light on these challenges and advocate for change.

1. The Invisible Struggles of Neurological Conditions

The daily struggles of people living with neurological conditions are often invisible, yet profoundly impactful. Fatigue affects 61% of patients, while challenges at work, in continuing education, and within personal relationships compound their difficulties.

Patients report that 85% of medical professionals either dismissed or underestimated the severity of their symptoms, leaving them feeling unheard and invalidated.

Financial burdens and stigma are common, creating a multifaceted crisis that undermines both health and the quality of life. Stigma, in particular, isolates patients further, as society often fails to understand the nature and complexity of these conditions.

Caregivers face their own set of invisible challenges. Half of all caregivers report being unable to maintain employment due to the demands of caregiving, and only 33% receive financial benefits.

Women are disproportionately affected, with 7 million across the EU out of the workforce because of caregiving responsibilities.

These statistics highlight an urgent need for policy changes to support both patients and their caregivers. Flexible job policies, income support, and educational resources for caregivers must become priorities to ensure equitable and sustainable care.

2. Bridging the Gap Between Education and Healthcare Systems. Pediatric Neurological Care

One of the critical takeaways from the discussions that we've had at the Parliament was the need for improved coordination between the education and healthcare systems.

Neurological conditions often manifest in ways that impact cognitive function, social interaction, academic performance and work performance. Yet, schools frequently lack the resources or training to provide brain health education.

Similarly, healthcare providers often lack time to guide families through the challenges that accompany these conditions.

A collaborative approach between educators and healthcare professionals is essential. Schools must be equipped with training programs to both encompass brain health education, and also accommodate students with neurological conditions. Healthcare systems together with educational systems should proactively engage in creating individualised education plans (IEPs).

Integrating these systems would ensure that children with neurological conditions receive the support they need to thrive academically and socially.

3. Brain Health: A Neglected Priority

Despite its profound impact on individuals and society, brain health remains an underprioritized area in public health. With 1 in 3 people expected to experience a neurological condition in their lifetime, this oversight is a major public health concern.

Experts at the working visit stressed that we need to advance research, funding, and public awareness initiatives dedicated to brain health.

Addressing this gap requires not only more robust research investment, but also public health campaigns that emphasise prevention and early detection.

Brain health should be framed as an integral part of overall well-being, with specific strategies to reduce stigma, promote healthy lifestyles, and improve access to care for neurological conditions.

4. Access to specialists - a key challenge

Ensuring access to specialists is another key challenge. Every EU citizen should have access to a neurologist within a 60-minute travel radius, yet care gaps persist, particularly in rural and underserved areas. This highlights the need for both better care coordination and expanded training for general practitioners to act as effective gatekeepers, secure and compliant technologies for better care coordination and data sharing.

5. Recognizing Caregiving as Essential Work

Caregiving is often undervalued, despite being an essential part of the healthcare ecosystem. Families bear a significant portion of the burden, with family members often recognizing symptoms before healthcare professionals. Yet, caregiving is frequently seen as a private matter, leaving caregivers unsupported and overburdened.

Advocates at the working visit emphasised the need for stronger policies that recognize caregiving as valuable and provide resources to support caregivers.

Flexible work arrangements, job security, income support, and educational tools are essential to ensure that caregivers can provide care without sacrificing their own well-being or financial stability.

Recognizing caregiving as a societal responsibility, rather than an individual one, is key to creating a more equitable system.

6. The Personal Is Political

For many participants, neurological conditions are deeply personal, affecting their families, friends, and communities. MEPs such as Ana Miranda Paz and Nina Carberry highlighted the importance of translating personal experiences into political action. The personal is political, and it is through sharing lived experiences that policymakers can truly understand the urgency of these issues.

Collaboration between health professionals, patient representatives, and families is crucial to creating effective policies. By integrating lived expertise into decision-making, the EU can craft solutions that address the real-world challenges faced by those living with neurological conditions.

7. Policy and Legislative Opportunities

Several legislative frameworks were highlighted as opportunities to drive change. The Intersectoral Global Action Plan on Epilepsy and Other Neurological Conditions provides a roadmap for addressing these issues, while initiatives like the European Health Data Space can facilitate better data sharing to inform policy and practice. However, the reduced budget of the EU4Health program presents a challenge, underscoring the need for sustained advocacy to secure adequate funding for brain health initiatives.

Neurological conditions represent one of the greatest health challenges of our time, impacting millions of lives and placing enormous strain on families and caregivers.

Addressing these issues requires coordinated action across healthcare, education, and social and public policies, with a focus on breaking down stigma, supporting caregivers, and ensuring access to quality care.

As the discussions at the European Parliament demonstrated, change begins with acknowledging the personal impact of these conditions and translating that understanding into political action.

Only through collaboration between the private and the public sector, between patients and healthcare providers, between technology, social insight and sustained advocacy can we hope to address the invisible issues of neurological conditions and create a more inclusive and equitable society.

Thank you to the European Federation of Neurological Associations (Astri Arnesen, Orla Galvin, Iva Galovic,Tadeusz Hawrot, Community Advisory Board Members: Cathy Molohan, Leila Ali, Chantel Fouche, Lorraine Duffy, Henk Lindeman, Saija Ristolainen-Kotimaki, Andra Bria, Anna Revilla Brunol), and the Members of the European Parliament who supported this meeting and the advancement of brain health at a policy level (MEP Romana Jerković, MEP Ana Miranda Paz, MEP Nina Carberry, MEP Tomislav Sokol and the MEPs Interest Group on Brain Health and Neurological Conditions ).

We are here for the long run, as Astri says.