- Improving the knowledge of external stakeholders about the causes of Spina Bifida and Hydrocephalus (SBH) and the solutions necessary to guarantee people with SBH full enjoyment of their human rights
- Reinforcing IF presence and capacity to defend the rights of persons with SBH at all relevant regional and international fora
- Uniting forces with other stakeholders and learning from their experiences
- Engaging in political advocacy on the issue of health as human right at all levels
- Campaigning – how all the above frames the Right to Health campaign
What is the right to health?
The World Health Organisation (WHO)’s Constitution on the Rights of Persons with Disabilities (CPRD) enshrines “… the highest attainable standard of health as a fundamental right of every human being”. The right to health includes access to timely, acceptable, and affordable health care of appropriate quality. According to the Convention on the Rights of Persons with Disabilities Art. 25 ‘’States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability’’.
By signing the Convention the States Parties commit to: providing the same standard and quality of free or affordable care to persons with disabilities as to others as well as providing disability specific care, to healthcare services being as close to communities as possible, to prohibiting discrimination in insurance, and preventing denial of healthcare due to disability. The right to health is universal and non-negotiable.
What is multidisciplinary care?
Children and adults with Spina Bifida and Hydrocephalus (SBH) need different specialists who can address their multiple medical and cognitive issues and promote a healthier lifestyle. This can include urologists, neurologists, orthopaedists, psychologists and others. Simply put, individuals with SBH need an integrated system to deliver this complex multidisciplinary care. Services need to be age-appropriate and should ensure an effective transition from paediatric to adult care.
Multidisciplinary care is ideally delivered through a one stop clinic where the patient sees all the specialists he/she has to see without the need to get various appointments for different specialists at different locations. The multidisciplinary approach also relies on good communication within the team of specialists about the patient’s condition. IF sees multidisciplinary care as the right care for persons with SBH.
Lack of understanding of mental health needs of persons living with complex physical disabilities, and lack of accessible mental health services, have led to an ever increasing stigmatisation of the mental health issue, making it difficult to reach out for help when it is needed. We need to break this cycle.
For persons living with SBH, the access to affordable multidisciplinary healthcare is very needed. some of the reasons IF advocates for Multidisciplinary care are based on the feedback we have received from our members:
- Lack of medical knowledge about SBH treatments
- Long waiting times
- Uncoordinated nature of care and lack of availability of specialist medical devices.
The almost universal failure to provide persons with SBH with tailored multidisciplinary care of both their physical and mental health needs, leads to declining overall health, including anxiety and depression
Reflection paper on mental health “Knowledge is key: understanding mental health and wellbeing of people with spina bifida and hydrocephalus and their families”
What is the cross-border healthcare?
Cross-border healthcare refers to a mechanism in which the patient from one EU member state (where he/she is insured) uses the health services in another member state. People often seek healthcare elsewhere when a specific treatment is unavailable, the specific care in the other country is considered better or on doctor’s recommendation.
After IF’s research, undertaken in 2016, “Right to health: reality of persons with Spina Bifida and Hydrocephalus”, and “Impact of cross-border healthcare on persons with disabilities and chronic conditions” , IF urges for more targeted attention of the European and national decision-makers to the right to health of persons with disabilities, including through:
- Intelligent long-term investment in seamless multidisciplinary care for persons with disabilities
- Training of medical community in the human rights – based approach to health of persons with disabilities
- Efficient collaboration between Member States, including the development of European Reference Networks, in order to facilitate access to health for persons with complex disabilities and chronic conditions
- Conscientious monitoring of impact of Directive 2011/24/EU on patients with disabilities and chronic conditions
- Accessible information campaigns on the right to health of persons with disabilities, designed and run with active involvement of representative organisations of persons with disabilities and patient groups.
- Improvement of information dissemination about cross-border healthcare by the National Contact Points in cooperation with patients organisations
- Coverage of assistive devices including continence management aids for persons with spina bifida
- Reimbursement of additional costs incurred by persons with disabilities when accessing cross border healthcare in order to avoid discrimination
European Accessibility Act
What is the European Accessibility Act (EAA)?
The European Accessibility Act aims to improve the functioning of the internal market for accessible products and services by removing barriers created by divergent legislation. This will facilitate the work of companies and will bring benefits for disabled and older people in the EU.
The UN Committee on the Rights of Persons with Disabilities recommended that the European Union take efficient measures towards the prompt adoption of an amended European Accessibility Act that is aligned to the Convention on the Rights of Persons with Disabilities. The Committee also recommended that the European Union ensure the participation of persons with disabilities, through their representative organizations, in the adoption process.
The Committee on Internal Market and Consumer Protection (IMCO Committee), which is the responsible Committee for the EAA in the European Parliament, published a very worrying draft report. For that reason, on March 2017 IF joined the demonstration organized by the European Disability Forum in Brussels, calling for an strong and ambitious European Accessibility Act.
For more information, please see the IF reaction to the European Commission’s proposal for the Accessibility Act
European Reference Networks (ERNs) are virtual networks, involving healthcare providers across Europe. They aim to improve diagnosis and care for complex or rare medical diseases or conditions that require highly specialised treatment and a concentration of knowledge and resources.
In 2017, 24 ERNs were launched, including the so called ERN-ITHACA, for congenital malformations and rare intellectual disability. IF and an initial group of 15 spina bifida healthcare providers from 7 countries were included in this ERN as an associated group.
Active patient involvement and patient-centeredness is essential in ERNs. EURORDIS therefore has launched the ePAG (European Patient Advocacy Group) initiative to enable democratic patient representation. Membership of ePAGs is open to all rare disease patient organisations.
IF selected Ammi Ammerson from its Swedish member association RBU to be its ePAG patient representative, and she has since been asked by the ERN-ITHACA to sit on the Board on behalf of our associated group.
To create momentum in the field of spina bifida, a special working group has been established within the ERN-ITHACA in July 2018, which aims to bring together clinicians with spina bifida expertise from various ERNs. Together they will start to work on the development of European management guidelines for spina bifida.