Holistic care encompasses the broad spectrum of health, social and everyday needs of people with a rare disease and their families.
For the World Health Organization, the holistic approach to health care is one in which «the individual in need of care is seen and celebrated as a whole person with multidimensional needs» (WHO, 2007).
Comprehensive care involves, for example:
● The provision of timely, high-quality, and integrated care according to unmet needs;
● Break down barriers to accessing care, treatment, education, employment, leisure, psychological support and all aspects of social inclusion;
● Enabling people to fully enjoy their fundamental human rights on an equal basis with other citizens.
This topic is, therefore, vast: it ranges from ensuring coordination between health and social assistance to paramedical support (such as diet, psychological support, etc.) to the sphere of social service (for example, adapted housing, care centers, resource centers), to a person’s inclusion in broader social life (e.g., education, employment, relationships, etc.).
A significant challenge for patients, professionals, and health and social systems is the need for more streamlined and integrated therapeutic pathways allowing people with rare diseases to navigate health and social care systems.
It is particularly problematic given the complexity of many of these 8,000 rare conditions and the lack of awareness and understanding across all sectors of society of the full impact of conditions (e.g., how they manifest themselves in patients and the myriad ways in which different aspects of daily life can be adversely affected).
There is often little communication and collaboration between the different ‘medical’ actors providing specialist care: the disjunction becomes even more noticeable when integrating paramedical and social care professionals.
The need for a holistic, person-centered approach to care is critical in the field of rare diseases, where only around 5% of conditions have dedicated therapy of any kind; in such cases, the integration of paramedical and social disciplines together with the classic ‘medical’ approach to treatment and management is highly valued and valuable.
Data from the first European survey on the daily impact of rare diseases (Juggling care and everyday life: The balancing act of the rare disease community) confirm that the consequences of living with a rare disease are far-reaching beyond the health niche. Eighty-five percent of respondents stated that the rare disease affects their health and everyday life. Seven out of 10 people living with a rare disease or caring for an affected family member have to reduce or stop their professional activity, and 69% also face a decreased income.
Adapted from Rare 2030