Advocates Unite on Access to Neurological Care

Issued by the European Federation of Neurological Associations, or EFNA, the report emphasises the need for policies that ensure equitable access to care for patients with neurological conditions.  The report reflects discussion at an October 2019 patient advocacy workshop in Warsaw held by EFNA in cooperation with the Global Alliance for Patient Access.

Citing an “enormous and still growing” disease burden, the report notes that about one in three people in the EU suffer from a neurological condition. Deaths from neurological conditions have increased by nearly 40% in recent decades.  Dementia, migraine, stroke, epilepsy, Parkinson’s and Alzheimer’s are among the neurological disorders highlighted.

These facts demand action, the report argues.  It pinpoints three priorities:

1. Improving access.  Because neurological disorders may not be life threatening, policymakers and health care systems often consider treatment for these disorders as lower priority than, for example, cardiovascular conditions or cancer.  But poor quality of life is an important factor, the report notes, sometimes even “worse than death.”

The report calls for the “political will” to ensure patients’ access to diagnostics, specialty health professionals, clinics and medical therapies as needed.  Improving disease awareness is also an important step towards improving access, the report explains, as is increasing education for medical students and boosting the workforce of medical professionals trained to treat neurological conditions.

2. Reducing stigma.  Feelings of embarrassment or unwanted attention from strangers can increase patients’ isolation and discourage them from seeking the diagnosis or treatment they need.

Because stigma can be nebulous and deep seeded, it’s sometimes harder to address than disease symptoms, the report explains.  Large-scale awareness and education campaigns can help by increasing disease state awareness and reducing misconceptions about those who live with neurological conditions.

3. Empowering patients.  At the core of meaningful change lies the patient voice.  As the report makes clear, patients should actively engage with policymakers to ensure that policies and practices across Europe prioritise patients’ needs.  EFNA is seeking to help train patients for this purpose.

The report outlines the need for a patient-centred approach that encompasses qualitative factors that matter to patients – functionality, quality of life and ability to work.  A patient-centred approach also takes into account patients’ access to social care.

The report calls for stakeholder collaboration at the EU, international and global levels to improve access to neurological care.  From harnessing the power of technology to amplifying the voice of patients, the report’s recommendations reflect the continued commitment of patient organisations to improving the care and lives of people with neurological conditions.