Survey on the invisible issues of neurological conditions

The European Federation of Neurological Associations (EFNA) is committed to amplifying the voices of those with neurological conditions. As part of our mission, we conducted a comprehensive survey to uncover the invisible issues faced by this community- issues that remain largely unrecognised by the general public, policymakers, and health system leaders.

With 4,687 responses, this survey provides critical insights into the societal, financial, physical and mental challenges associated with having a neurological condition. These challenges extend far beyond health; affecting access to education, employment, and insurance, while perpetuating stigma, discrimination, and isolation. Invisible issues such as sleep disturbances, mental health struggles, and pervasive fatigue further compound the difficulties faced by this population.

By presenting this data, we aim to shed light on the lived experiences of those with neurological conditions, providing the figures and statistics necessary to drive meaningful discussions and action among all stakeholders. Recognising the dynamic nature of these issues, EFNA intends to repeat this survey in five years to track progress and identify emerging trends.

KEY FINDINGS:

• 84% of people indicate they experience stigma as a direct result of their neurological condition.

• The top 3 areas where people experience stigma are: interaction with medical professionals 46%, in employment 19%, interaction with the public 11%.

• 35% of people frequently are made to feel that it is their fault they have a neurological condition.

• The top 3 invisible physical issues are fatigue (85%), pain (74%) and sleep issues (74%).

• Health literacy in healthcare is important: 85% report medical professionals did not believe the extent or severity of their symptoms. 83% did not receive adequate treatment because they were not taken seriously.

• Health literacy among patients is important: 56% had difficulty describing symptoms to their doctor, which, in part, led to 67% of people being initially misdiagnosed!

• 71% of people with a neurological condition have had to adjust their role or work schedule because of their condition, of which only 35% report that their employer was accommodating of this change.

 

CLICK HERE TO READ THE COMPLETE REPORT

 

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