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On 25th January 2017, HFE joined the conference on access to healthcare for persons with disabilities organised by the International Federation for Spina Bifida and Hydrocephalus (IFSBH) in cooperation with the European Patients’ Forum (EPF) and the European Disability Forum (EDF). In this occasion, two reports on “Right to health: reality of persons with Spina Bifida and Hydrocephalus” and “Impact of cross-border healthcare on persons with disabilities and chronic conditions” have been launched, aimed at assessing access to healthcare for persons with disabilities and making concrete recommendations on what still needs to be done..

Both reports show a clear lack of multidisciplinary care for people with complex disabilities, such as spina bifida and hydrocephalus, which limited coverage of mobility devices and continence aids. Moreover, waiting times and limited knowledge are considered the most serious obstacles that European citizens do experience. Despite the Article 25 of the UN Convention on the Rights of Persons with Disabilities which clearly calls on States Parties to recognise that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability, human rights of persons with disabilities and chronic conditions are continuously violated as they struggle to access appropriate and affordable healthcare in their community. According to the report on Right to health: reality of persons with Spina Bifida and Hydrocephalus, only 17% of patients affected by Spina Bifida and Hydrocephalus (SBH) have a multidisciplinary clinic in their area and the 29% find access to care very difficult. The worst case scenario is in Poland, followed by Portugal. Moreover, the financial coverage of treatment and assistive products for patients with SBH is grossly insufficient.

As emphasised by Ms Ruta Udraite (IF Member), persons with SBH need an integrated system to deliver complex multidisciplinary care, where patients can see all the specialists without the need to get various appointments for different specialists at different locations. The existence of multidisciplinary care is a way of prevention of medical complications, costly surgeries, negative attitudes and stigmas. It may also impact people’s satisfaction with the care they receive.

What also needs to be tackled is the low use and low awareness across Europe on the Directive 2011/24/EU on the application of patients’ rights in cross-border healthcare. As highlighted by IF research findings, the 85% of the European population has never used cross-border healthcare. Provision of healthcare is and should be considered by all EU Member States as an area of shared competences. Therefore, more involvement of representative organisations together with a wider EU guidance on the National Contact Points are crucial to enhance the impact of EU legislation on patients with disabilities and chronic conditions in all European countries.

In line with this, Mr Laurent Louette, Communications Officer at the European Patients’ Forum (EPF), introduced the audience to the new campaign on access to healthcare entitled ‘Universal health coverage for all’, aimed at raising awareness and contributing to make the access to care a reality for EU patients by 2030.

MEP Nessa Childers (S&D, Ireland) pointed out that there are 8 million people with disabilities across Europe and much more actions need to exist to meet the needs of vulnerable groups. Financial burden of medical tourism, lack of information as well as a language barrier have all been invoked as reasons for not seeking care in another EU Member States. EU policy makers need to urgently tackle the lack of EU-level measures to ban discrimination against persons with disabilities in access to health and analyse the impact of its cross-border healthcare legislation on patients with disabilities.

Mr Martin Rutherfurd, legal officer at the Directorate on Cross border healthcare and eHealth at DG SANTE, highlighted “How the cross-border Directive represent both a codification of jurisprudence and a new set of legislation”. However, people also need to bear in mind other social security regulations while seeking treatment abroad.

Disability knows no borders, no boundaries; it’s time to streamline what EU does’, said MEP Diane Dodds (UK) in her closing remarks. Much more communication, involvement and coherence among health practitioners and teams need to exist. A multidisciplinary approach along with a major awareness on the Directive on cross border healthcare will positively impact people’s lives, by developing more accessible and sustainable health services, and making all citizens with disabilities fully exercise their right to health both home and abroad.