Social Services

As with any other chronic severe illness, social service support is crucial to the well-being of patients with sickle cell disease. A person who is having trouble finding a place to live, for instance, is unlikely to make many health maintenance visits. The problems faced by people with sickle cell disease include:

Undereducation. Frequent sickle cell crises often interrupt the education of people with the disorder. The problem is not simply days of school missed. Children with sickle cell disease are often not feeling well even when they are in class. Illness disrupts their concentration and interferes with learning. If children fall behind their peers, educational difficulties mount. The social pressure of being in a class with substantially younger children pushes many youngsters further off the path to education. One approach to the problem of disruptions in schooling has been to have tutors work with children at home and even in the hospital at times. Such an approach requires close cooperation between medical and social service providers. Other innovative strategies are needed to address the crucial issue of education for patients with sickle cell disease.

Underemployment. People with sickle cell disease are often unemployed or employed at underpaying jobs because of their illness. Undereducation exacerbates the problem. Health providers can help employers develop plans that will allow people with sickle cell disease to work to their fullest potential. Sometimes, this means a flexible schedule that allows for time lost with illness to be made up. Employers should be encouraged to allot adequate time to patients for the health maintenance support they need. Ultimately, this will reduce time lost from the job. "Telecommunting" to jobs is increasingly common in the work place. Home computer links, faxes, and the like allow many people to do the bulk of their work from home. These occupations usually require skills picked up both in the work place and the classroom. Undereducation often makes this type of job inaccessible to people with sickle cell disease. Specialized training can overcome some of these difficulties and allow these patients to fulfill their desire to be productive members of society.

Medical bureaucracy. The medical bureaucracy grows and becomes more complex daily. People with no serious illness frequently are stymied by the paperwork, restrictions, and regulations that proliferate from both government and private health finance organizations. Patients receive care for crises, but often have difficulty obtaining preventative care, such as ophthalmology examinations. The amount of paperwork can be staggering. Undereducation means that patients often are not equipped to handle these issues. Social support services are crucial to what often is the central part of the lives of people with sickle cell disease. Other areas that impinge on medical care are services such as transportation, which are often called "ancillary". In truth, these services are central to the health care of these patients. Unfortunately, many medical centers and government agencies are cutting the positions of social workers and other people who deal with these issues. Often, these moves are part of cost-cutting efforts. In reality, these maneuvers cost more, due to the consequent reduction in health maintenance and preventative care.

Basics of Living. Anyone with a chronic illness faces hurtles in life in addition to those in health. The problems of undereducation and underemployment pass through the fulcrum of medial exigency to disrupt much of life's basic fabric. Depression sometimes is the manifestation of these difficulties (7). At other times it is antisocial or self-destructive behavior. A concerted effort by health care and social service providers must include the patient's family and other people important in their social environment.

Depression is often not appreciated in people with sickle cell disease. The condition occurs in children as well as adults (8). Low self-esteem commonly accompanies and exacerbates depression. In this setting, patients often withdraw from family and loved ones, in addition to health care providers (9). The isolation can create a self-perpetuating scenario of low achievement and low expectations. Parental frustration is common, most often with adolescents and young adults. Adolescence is a difficult time for many young people. The stress of a chronic illness can produce conflicting tendencies. On one hand, the young person feels a need to assume control of his or her life. On the other, the prospect of facing the barriers created by sickle cell disease is daunting.

Antisocial or self-destructive behavior can take a variety of forms. Missing clinic appointments often reflects an underlying ennui and sense of helplessness. Some patients have the impression that they are unlikely to reach adulthood, much less middle or older age. Whether this results from overt statements by providers during childhood or more subtle cues and signs is unclear. The effect, however, can be striking. Some patients feel that education is a waste of time if they will not get beyond their teenage years anyway. Certainly, preparation for a career would be illogical. A few patients try to use their prescription analgesics for recreational purposes. Fortunately, the need to control pain with these medications makes this behavior less common than is thought by the general medical community. Finally some patients are lured by illicit drugs, such as cocaine. Only a determined effort by all parties concerned with the patient's welfare can turn around the lives of young people who have fallen prey to these traps.