The Center for children with Chronic Diseases (HCCCD)
The goal of the Hadassah Medical Organization (HMO) is to "build a better world through medicine." While Hadassah prides itself on being a “state of the art” medical facility, the primary aim of the staff of HMO is to enhance the comfort and well-being of patients and their families while they are in the hospital and after they leave. The institution places great emphasis on providing integrated and comprehensive care to all its patients. This includes providing extensive support services to individuals with chronic diseases, and in the case of children, helping their families cope with the burden of caring for a child with a chronic disability.
HMO is in unique position to assist children with chronic illnesses living in Israel. As one of the largest and most advanced medical centers in Israel, Hadassah can provide nearly all the medical and psychological services that are required for children with chronic diseases. Medical specialists at Hadassah have accumulated years of experience dealing with a wide range of chronic illnesses, and the support staff is very familiar with the rehabilitative, psychological, social and educational issues that face children with chronic diseases. Numerous pediatric specialty clinics and medical divisions have been established to care for specific chronic illnesses such as cystic fibrosis, diabetes mellitus, neuromuscular diseases, and familial dysautonomia, and these units are serving the entire Israeli population.
The leadership of Hadassah is giving its highest priority to improving the care of children with chronic diseases. To achieve this objective, HMO has established the HadassahCenter for Children with Chronic Diseases (HCCCD). The goal of HCCCD is to enhance the care provided to children with chronic diseases, and to help them and their families contend with the challenges of living with a chronic disease. The Center is structured to take advantage of the medical expertise at Hadassah, and to centralize it, as much as it is possible, in one location. Centralizing the care for chronic children at the HCCCD enables parents to come to one location to receive a large portion of their care. Most important, the participating physicians at HCCCD take on the responsibility of coordinating the care of children thereby alleviating some of the burden that families must bear.
The HCCCD, located at the Mt.Scopus campus of HadassahUniversityHospital, is under the direction of Professor Eitan Kerem. Professor Kerem, who is the Director of the Pediatrics Department at MountScopus, has extensive experience in the care of children with chronic diseases. Professor Kerem is an internationally recognized pediatric pulmonologist who has established the leading cystic fibrosis clinic in Israel. As a result of his extensive experience with chronic diseases, Professor Kerem is intimately aware of the challenges facing children with a wide variety of chronic conditions. One of his personal goals has been to improve the care that these children receive by radically altering the current health care delivery system as it pertains to chronic diseases.
The Shared Support Services Program
One of the key problems confronting the HCCCD is the fact that it can not yet provide all the services that children with chronic diseases require. Parents are still forced to coordinate their child’s care among multiple care providers within Hadassah. Most rehabilitative services including occupational therapy, feeding therapy, physical therapy, and speech therapy are provided by separate units who do not have the resources to provide the necessary dedicated personnel that can work within the framework of the HCCCD. The same is true for social, psychological, and educational services. The decentralization of these services places additional burdens on parents, and limits the ability of the HCCCD to accomplish its goal of providing comprehensive and integrated care at one location.
HMO and the HCCCD are requesting funding for a program that will support Shared Support Services within the framework of the HCCCD. As shown in the figure, the participating units of the HCCCD will utilize personnel with special expertise in treating children with chronic diseases. The rationale for such a model is that children with chronic diseases have many of the same rehabilitative, psychosocial, and educational challenges, and the individuals working in the Shared Support Services can provide the appropriate assistance to the separate units. At the same time, the Shared Support Services program is cost effective and allows for the provision of more comprehensive and integrated care to the HCCCD’s patient population.
At present, it is difficult to fund the Shared Support Services program. The Israeli Health maintenance organizations will not reimburse for this care, because they consider these services to be either non-essential or a duplication of the services that they provide. Within Hadassah, the different rehabilitative, social service, and psychological units do not have the resources to provide personnel support to the HCCCD. For this reason, it is necessary to seek outside funding.
Head Nurse: Armoni Shoshana
A chronic disease is defined as a disease lasting over a year and which requires medical treatment and regular follow-up. Advances in the field of medicine and technology have lead to an increase in the survival rate and life expectancy of children with chronic diseases and special needs. On the other hand, the population of children with chronic diseases is steadily growing, and is now assessed to be comprising about 16% of the general population of children. Chronic diseases are different in their severity but all of them have complex psychosocial consequences on the children and their families.
Treatment and medical surveillance require returning visits to various medical specialists, consultation by a team of multidisciplinary allied health professionals and performing diagnostic tests. Sometimes the children need hospitalization, paliative care or treatment for disease complications. In our center we address all these needs and concerns and provide children a pleasant environment and warm, caring treatment.
For more information and links to the center's sub-units, see below.