EU Advocacy Groups Call for Awareness, Education to Address Widespread Stigma

November 16, 2015

by Amanda Conschafter, blog editor

Patients living with pain increasingly face an added dimension to their condition: stigma. At the recent meeting of the European Union’s Interest Group on Brain, Mind and Pain, advocates considered the impact of stigma on patients living with pain or mental conditions—and how greater awareness of the problem may improve their quality of life.

Held at the European Parliament in Brussels, the “Tackling the Stigma of Brain, Mind and Pain Disorders” meeting began with European Federation of Neurological Associations President Ann Little noting that stigma is a key issue for patients affected by brain, pain and mental health disorders. Stigma, Little explained, not only results in negative behavior but also has other consequences, such as implications for funding. Brain, pain and mental health conditions occur twice as often as cancer-related conditions, she explained, yet research on cancer and cancer organizations receive twice as much funding.

Throughout the event, speakers emphasized the scope of stimga’s impact. Professor Matilde Leonardi of the Besta Neurological Institute presented the outcomes of a Patient Experience Survey regarding patients with neurological conditions in 27 European countries. The data demonstrated that 57 percent of patients feel stigmatized at least occasionally. As Prof. Leonardi explained, stigma can lead to delays in diagnosis or denying the patient the right to be prescribed the most efficacious drugs. Patient testimonials gave rise to a call for more awareness, education and training.

Pain Alliance Europe’s President Joop van Griensven addressed the impact of stigma on patients living with pain. Stigma, he explained, allows a belief in false or inadequate information to negatively impact patients and their families. The social impact is “enormous.”

Van Griensven also addressed pain patients’ difficulty in getting others to believe their description of their condition. He reported that a recent survey from The PAIN Patients Pathways Project found that 77 percent of health care providers state that they believe their patients. While largely positive, the data still leaves one in four health professionals who do not believe their patients. The statistic equates to approximately 25 million pain patients in Europe who receive care from a doctor who does not believe them.

Van Griensven announced a European awareness campaign under development by the European Federation of Neurological Associations and the European Pain Alliance to help achieve “the basic right of each patient: the right to be believed.” Feedback during the event’s question and answer session highlighted the need to talk directly to the policy makers and focus on possible solutions. The campaign, entitled “Under the umbrella,” will launch during Brain Awareness Week 2016.

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