The expert patient is a new approach to chronic disease management, where patients are recognised as the experts in managing their own disease. This could be used to help and empower recently diagnosed patients to take control of their own health. In Andalucia, Spain, this type of programme is carried out by an organisation called School of Patients (“Escuela de Pacientes” –www.escueladepacientes.es ).
To illustrate how patients lives are improving within this school, we present here the testimony of two its teachers: Fabiola Rey -diagnosed diabetic thirty years ago- and Rocio Fernandez -fighting breast and lung cancer for over twelve years.
The expert patient
“Patients might not be doctors, but they know how they want to be treated”- says Rocio Fernandez, a woman has been fighting with cancer for a long time. A medical treatment is not only about alleviating symptoms, but also to pay attention at how the patient is feeling emotionally. In the school of patients, groups of people undertaking the same chronic disease, e.g. diabetes, cancer, hemophilia, participate in support groups guided by others who have had their same disease for a longer time. They are called the teachers, and they do this activity voluntarily without receiving any type of economic benefit. But the teachers at the school of patients are not a substitute for the doctor; their mission is to help to complete an integral treatment to the patient.
School of Patient, more than teaching
Although Fabiola has been a teacher at the school of patients for many years, she feels like she is still participating as a student in the workshops that are actually lead by herself. “I am continuously learning at the school of patients… All the time. Even when I meet people who have been going through my disease for less time than me, I learn from them because it makes me stay connected with the time when I had just been diagnosed”-said Fabiola. In the workshops, patients are encouraged to be active and to be stronger than their diseases, and Fabiola says that one can really see the difference in them, before and after each workshop.
A new meaning to the disease
Being diagnosed with a chronic disease can raise up existentialist questions to people. For Rocio, being able to help others through the school of patients, has filled up that gap. “Being a teacher at the school of patients allowed me to give a different meaning to my disease, because now I can teach to others all the things that I’ve learnt during my treatment”- said Rocio. And indeed, who would have more knowledge about dealing with a chronic disease than someone who has lived with the disease for many years? It is probably because of this that this type of programmes are trying to be implemented in different European countries (read more at www.eupati.eu/). The way our grandparents generation dealt with chronic diseases, is certainly different than the way younger generations have started to do it. Only time will let us see the overall benefits, but Rocio and Fabiola are already an example of this.
By Nuria Luque and Bruno C. Borro