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Impact of cross-border healthcare on persons with disabilities and chronic conditions

INTERNATIONAL FEDERATION FOR SPINA BIFIDA AND HYDROCEPHALUS
February 2017

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"The International Federation for Spina Bifida and Hydrocephalus (IF) together with the European Disability Forum (EDF) and the European Patients Forum (EPF) conducted a survey among their networks to assess the impact of the Directive 2011/24/EU on the application of patients’ rights in cross border healthcare (crossborder healthcare Directive) on persons with disabilities and chronic conditions in the EU. The findings of the survey showed low awareness and low use of the Directive. A vast majority of 85% has never used crossborder healthcare even though 69% of respondents might have used it had they received information about it. Approximately three quarters (77%) of respondents have never heard about the Directive" 

Right to health: Reality of persons with spina bifida and hydrocephalus

MCPHERSON. Amy
January 2017

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"This report maps the situation of persons with SBH in relation to healthcare access and is a follow up of the CRPD Concluding Observations Art.25. Through a comprehensive survey, IF collected valuable data on the experiences, satisfaction, and perceptions of healthcare coverage of individuals with SBH across Europe. Based on its findings, the financial coverage of treatment and assistive products for patients with SBH is grossly insufficient across the EU. Europe as a whole lacks multidisciplinary care and specialised SBH teams, which translates into long waiting times and insufficient knowledge of the SBH specificities. 

Considering these findings, IF urges the EU Member States to adequately support the healthcare needs of persons with SBH, and to invest more substantially into creating multidisciplinary clinics that can help avoid preventable complications 11 and may reduce the overall burden 12 on the patient and the system. In addition, the Member States should actively support creation of the European Reference Networks as a way of improving care for persons with SBH. IF also calls on the European institutions for support in training medical professionals on rights of persons with disabilities."

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