photo18 April 2017 // On the European Patients’ Rights Day 2017, IF is calling attention to the problems persons with Spina Bifida and Hydrocephalus (SBH) still face with access to healthcare, and to the need to ensure their basic human rights. As access to healthcare is a key priority for IF and its members, IF strongly supports the European Patients’ Forum (EPF) campaign on “Universal Health Coverage For All”.

With this campaign, EPF aims to raise awareness about the barriers that patients face in accessing healthcare, and to build on current political momentum – including the UN Sustainable Development Goal for Health (SDG3) – to foster EU cooperation on this essential topic.

The EPF campaign was launched on 27 February 2017 in the European Parliament and will run until the end of the year. Focus of the campaign are the five dimensions of healthcare. These areas of action are the so called five “A’s”:

  • Availability – whether a healthcare service or product is available in the healthcare system of a country.

  • Affordability – whether seeking healthcare causes financial hardship to patients.

  • Accessibility – whether there are barriers, other than financial (e.g. long waiting lists, geographical barriers, inaccessible buildings, offices, …), that make it impossible for patients to access healthcare.

  • Adequacy – the quality of healthcare and involvement of patients in shared decision-making with their healthcare professionals.

  • Appropriateness – whether healthcare meets the need of different groups in the population.

There are serious gaps in access to healthcare for persons with SBH across Europe with regard to the five ‘’A’s’’. This has clearly been indicated through our data collecting survey in 2016 and by ongoing member testimonies.

  • Availability – only 17 % of respondents indicated they had a multidisciplinary clinic in their area. Some EU member states, for instance Poland, do not offer multidisciplinary care at all. Lack of multidisciplinary care is the key issue consistently highlighted by IF members.

  • Affordability – with regard to continence devices such as catheters, which are essential for persons with SBH to stay in good health, 29 % of respondents have their costs partially reimbursed through their insurance and 18 % not at all. This results in the necessity of personal contributions. In addition, when the needed treatment is not available in the country of origin, persons with SBH have to seek healthcare abroad, which causes financial hardship, as the flow is usually from low income countries to higher income countries, and additional costs for travelling with a personal assistant are often not reimbursed.

  • Accessibility – persons with SBH usually have to wait months and in some cases over a year to get access to specialised healthcare. Also, the geographical distance to the nearest multidisciplinary clinic is an issue, with 27 % of respondents indicating they have to travel more than 40 km.

  • Adequacy – it has been indicated that medical professionals are often lacking in specific knowledge on SBH. It is then questionable whether in such cases good quality care can be delivered. In addition, persons with SBH are not always involved in decisions about their own care; on the contrary, 32 % of respondents indicated experiencing discrimination.

  • Appropriateness – this dimension is further connected to multidisciplinary care, particularly the need to have multidisciplinary care for children and adults with SBH, while ensuring a smooth transition from child to adult services. This unfortunately is not a reality, as in the few EU countries that do offer multidisciplinary care for SBH, this care only meets the needs of children and not adults.

Universal Health Coverage is a right for every patient and healthcare has to be accessible and appropriate to the needs of all, including persons with Spina Bifida and Hydrocephalus.

At the next European workshop, taking place from 26-28 May 2017 in Berlin, IF will be discussing with its members how they can get involved in the campaign and contribute to making access to healthcare for persons with SBH a reality.

Source: Right to health: Reality of persons with Spina Bifida and Hydrocephalus (IF; 2016)

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