WHO WE ARE
Hope Foundation was established in 1991 and has defined itself as a legitimate player in the health sector through patient advocacy and has stuck steadfastly to its primary objective which is creating awareness of the lesser known chronic diseases in Barbados. This has been successfully executed by a group of dedicated and committed volunteers who work well together while sharing a common vision of quality living for all.
The Foundation has benefitted significantly from a very involved Medical Advisory Board that has offered expertise while always mindful and sensitive to the needs of patients thereby promoting a participatory approach to the management of these chronic diseases creating more empowered patients.
The work of the Foundation has been conducted in a transparent and systematic way that has encouraged the confidence of public and private sector entities as well as those clients that require its services.
WHY WE ARE HERE
Hope Foundation was established to give the patients a voice, influence policy and ensure that the most updated information is available to patients and healthcare professionals alike. This was in fact a call to action in response to the lack of awareness and accommodation within the healthcare system for persons suffering from the lesser known Chronic Diseases.
It was not uncommon to first hear of Lupus on diagnosis and even though the term Sickle Cell was more recognisable, the treatment and management of this disease was not given the priority that it so greatly needed. In the more recent years, Arthritis has naturally become one of the issues that fall within the ambit of Hope Foundation. The general perception had been that those suffering from Arthritis should resign themselves to a life defined by pain, however, there are many options available to arthritic patients to mitigate against prolonged, intense pain.
Chronic illnesses are defined as illnesses that persist for a long period of time. The term "chronic" comes from the Greek chronos time and means lasting a long time. A chronic illness is one lasting 3 months or more by the definition of the U.S. National Center for Health Statistics. In ancient Greece, the "father of medicine" Hippocrates distinguished diseases that were acute (abrupt, sharp and brief) from those that were chronic.
Lupus, Sickle Cell Anaemia and Arthritis are conditions for which there are no cures thus requiring consistent medical attention. There are many other conditions that could be included as they too affect small numbers and are as life threatening and debilitating as the three mentioned diseases.
Persons suffering from these chronic illnesses usually experience fear, depression, anxiety, low self-esteem and frustration. The unpredictability that envelops these conditions gives rise to vulnerabilities and individuals, too often, in seeking appropriate care, are forced to defend their medical needs. These challenges presented are not isolated to the patients but also to care givers, family members and partners as they too are as affected.
Besides the medical implications there are other factors that affect the livelihood of those affected. For example employment, medical and life insurance are severely compromised if not annihilated. On the one hand, where persons are diagnosed pre employment the chances of employment are compromised because of perceived frequent absenteeism that would lead to low productivity. On the other hand, diagnoses post employment, encourage particularly insensitive employers, to stifle career growth and in more drastic situations patients are offered early retirement or frustrated into leaving especially after a period of ‘flare-ups’.
Similarly, medical and health insurance are denied to sufferers of these conditions which is particularly disadvantageous given that life insurance is a prerequisite to home ownership and medical insurance would allow the persons that are most in need to benefit. This is against the background that Lupus and Sickle Cell affect mostly young people in their most productive and reproductive years. It was therefore necessary to ensure that the rights of patients were not trampled and that systems be implemented to recognise and address the challenges faced by these persons.