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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."

Promoting the development of infants and young children with spina bifida and hydrocephalus : a guide for mid-level rehabilitation workers

WORLD HEALTH ORGANIZATION (WHO) Rehabilitation Unit
1996

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This manual explains the types, signs and causes of spina bifida and hydrocephalus describing how to assess the child’s level of development and complications. It gives suggestions on how to promote the child’s normal development, mobility, self-care and education with examples of equipment that can be made from local materials

Strategic issues in preventing cataract blindness in developing countries

Ellwein, L B
Kupfer, C
1995

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Cataract blindness is a public health problem of major proportions in developing countries. Intracapsular cataract extraction with aphakic spectacles has been the standard surgical technique for restoring sight. Because of image magnification in the operated eye, however, the result in unilaterally blind patients is less than satisfactory. Fortunately, with the availability of low-cost intraocular lenses ( IOL) and ophthalmologists trained in extracapsular surgery, it is now practical to intervene successfully in the unilateral case. The need for increased attention on the quality of the visual outcome is only one of three important strategic issues in cataract blindness control. The existing high prevalence of cataract blindness in developing countries and an increasing cataract incidence due to an aging population require substantial increases in surgical volume. The third issue relates to cost. If significant increases in surgical volume and quality of outcomes are to be realised without an increased need for external funding, service delivery must be made more efficient. The expansion of IOL surgery for unilateral blindness is a favourable trend in ensuring financial sustainability of delivery systems; patients can be operated on while still economically productive and able to pay rather than waiting for bilateral blindness and a less favourable economic and social impact. It the quality, volume, and cost issues are to be successfully addressed, operational and structural changes to eye care delivery systems are necessary. These changes can be effected through training, technology introduction, management of facilities, social marketing, organizational partnerships, and evaluation. With improved understanding of the critical factors in successful models their widespread replication will be facilitated.

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