TheUnited Nations Committee on the Rights of Persons with Disabilities (CRPD) is currently reviewing the situation of persons with disabilities in the European Union. IF consulted its European members about access to the Right to Health in the EU with the aim of presenting a response to the UN Committee. The role of the EU Member States, according to the Cross-border healthcare directive, is to facilitate cross-border healthcare services and set up National Contact Points (NCP) as well as to support the development of European Reference Networks. IF members conclude that these three measures are not working well enough in the EU.

None of the European IF member organizations has been approached by a NCP for the purpose of providing persons with SBH with information about SBH care in other EU countries, and many of the members did not know about the existence of NCP. The reason for low awareness is the lack of centralized information about SBH treatments in the European countries. The European Union should develop an EU-wide guidance for National Contact Points on how to provide accessible and outstanding information to patients with various disabilities.

Many patients with SHB travel to another EU country for treatment that is not available in their home country.  A significant number of associations in IF’s membership confirmed that the reimbursement of treatment by their health insurance is rarely problematic, However, additional costs for persons with disabilities, such as accessible travel and accommodation expenses, which is not an obligation under the Directive, are only occasionally reimbursed.

The Directive also states that the EU shall support Members States in the development of European Reference Networks between healthcare providers and centers of expertise. There is a pressing need to improve the cross-border exchange of knowledge and to invest in training of medical and paramedical personnel within the EU.

To read the Response to the list of issues on the European Union report to the UNCRPD in full, please click here

AR2014 30022 July 2015 // Last year, we established a Global Experts Panel to assist and advise IF in its activities; IF became a member of the Executive Team of the PUSH Alliance, a group of organisations all dedicated to improve prevention and care efforts in the fields of Spina Bifida and Hydrocephalus; a special committee for Spina Bifida and Hydrocephalus was launched in China, thanks to the work of IF President Margo Whiteford and former IF President Pierre Mertens; IF 25th International Conference GENErating Changes was held in Argentina, and the IF membership expanded with 6 new organisations in Europe, Africa, Asia, and the USA. In August, IF organised a workshop in Kenya on Preparing for adult life and development of adult services and developed a guide on transition from childhood to adulthood for people with spina bifida. The 3rd World Spina Bifida and Hydrocephalus Day was commemorated on 25 October 2014 with activities from IF's member organisations worldwide. In December IF launched its Strategic Plan 2015-2017. Check out IF's Annual Report 2014 for other milestones and additional information, and our Financial Report 2014.



DSCN3252 30022 July 2015 // This year's first IF European workshop took place on 3-4 July in Vilnius, Lithuania. IF members from 15 European countries came together to discuss their working priorities and to give the IF secretariat guidance for its 2016 activities. They were supported by IF's international Board of Directors who held their own meeting in parallel. IF members stated that in many cases persons with SBH who require medical intervention in another EU country receive some kind of reimbursement for their treatment, but usually they have to fundraise privately to pay for additional costs, such as transportation to and accommodation in the country of their choice. Also, worryingly, many IF members had no or little contact with the National Contact Points for cross-border healthcare, which are established to provide patients with information about healthcare abroad. 

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