The technological advances in addressing the Diabetes type 1 have represented a paradigm shift in the treatment of the disease. From traditional injections to the use of insulin pumpspatients are facing a transformative technology that seeks to improve the quality of life of people who suffer from this pathology. However, despite this technological revolution, patients need a comprehensive and holistic perspective of the diseasetaking into account the inequity and humanization of the disease, as well as the care of the family members who accompany them.
In this sense, patients claim the importance of improve access to therapies which, to date, depends on the regional powers and is different for each community. The socio-health implications of patients and the role of associations constitute an essential pillar in the care process of the 90,000 people who suffer from type 1 diabetes in Spain, according to data from the Spanish Diabetes Society.
Every November 14th the World Diabetes Day and, within the framework of this anniversary, the Spanish Diabetes Federation (FEDE) vindicates the importance of improving health care for people living with this disease in any of its stages. This fight is shared between societies and patients with the aim of adding quality assistance to technological improvement beyond the diagnosis and control of the pathology.
“I thought it was a temporary issue, but my surprise was when they told me that I had diabetes and that I would have to learn to live with it”
Ernesto Valdés, vice president of the Murcia Regional Federation of Diabetes Associations (FREMUD) He debuted at the age of forty as a type 1 diabetes patient, with the most common symptoms such as polydipsia, polyphagia and polyuria. “I have been a diabetes partner for 27 years,” she explains in an interview for ConSalud. “I thought it was a temporary issue, but my surprise was when they told me that I had diabetes and that I would have to learn to live with it,” he adds.
At that time, Valdés received the necessary hospital care for patients who have debuted. “At that time, the hospital care was very good, they kept me in the hospital for ten days, teaching me how to inject myself and they even told me about the associations,” he acknowledges.
“You are having checkups, but you also begin to suffer complications or risk of complications associated with diabetes, such as hypertension or hypercholesterolemia”
But the difficulties began in the periodic care circuit of between three and six months that type 1 diabetes patients in the region have to undergo. “You go for checkups, but you also begin to suffer complications associated with diabetes, such as hypertension or hypercholesterolemia,” says Valdés. However, the vice president of FREMUD recognizes that, thanks to the new technologies, has improved their quality of life.
“Currently there has been a radical change that is brought about by new technologies,” he highlights. “I started using a syringe, then an insulin ‘pen’ and now I wear a continuous insulin infusion pump,” she adds. “The lives of patients has changed radically”.
LIMITATIONS ON ACCESS TO NEW TECHNOLOGIES
As technological advances continue, stillexistlimitations in addressing the disease that patients claim from the associations. “This year we demand equality between communities when it comes to having access to new technologies,” claims Valdés.
The comprehensive and multidisciplinary care It is also key in the face of the chronicity of type 1 diabetes. “We need school nursing and the collaboration of the health system with associations of patients with diabetes,” points out the vice president of FREMUD. “Associations are an ideal complement for the health system,” he insists. In this sense, while technology is arriving, the debut of patients with diabetes needs more support within healthcare.
The demands of the associations are essential to “have access to more technologies and be able to choose”
Enara Chimeno, member of the FEDE youth grouphas suffered from type 1 diabetes since July 2015. He debuted when he was 15 years old and from the beginning he received attention from the nurse educator to learn how to treat the disease: “The nurse educator gave us an intensive course of two or three days to learn to count. rations or to administer insulin, among other things.”
Despite the good quality of care, Chimeno recognizes the importance of improving access to technologies for these patients. “In my case, in Álava, access to new technologies is quite limited right now,” she says. “They only offer us one pump, when we see that in other communities there are different pumps,” says the patient, who adds the demand of the associations to “have access to more technologies and to be able to choose.”
Juan started as a diabetes patient on November 14 with all the necessary health care
This opinion is shared among various patients, as claimed Soledad Campos, mother of Juan, a pediatric patient with type 1 diabetesand secretary of the Seville Diabetes Association, who debuted at six years old with symptoms “unusual for him.” With “almost four grams of sugar,” Juan started as a diabetes patient on November 14 with all the necessary health care.
“Thanks to the insulin pump, now as a mother I can rest at night,” admits Soledad, who assures the importance of having new technologies to improve the quality of patients and families. However, “not everyone has the same access to this technology,” she says. In addition, each community and each hospital makes insulin pumps available to the patient under certain criteria, “there is no free choice”.
THE ROLE OF THE FAMILY IN TYPE 1 DIABETES
Diabetes has a strong emotional impact. A study published in Diabetes Care points out the relationship between diabetes and depression, which highlights the importance of mental health management in patients with diabetes and their families. In this sense, healthcare support, connections between associations and the power of share similar experiences contributes to better mental health of patients and families.
“I miss an equal,” explains Campos who, although with the role of endocrinologist and nurse caregiver, claims the importance of feeling understood for those who are going through this situation. The process of uncertainty and acceptance of the disease was also a battle for Juan’s parents. “How do you explain to a six-year-old child that he has to be pricked for life?” insists Soledad, adding, “it is a hard adaptation process.”
In this sense, Soledad demands a guided care, “some specialist in pediatric diabetes to guide you in the hospitals,” he assures. Furthermore, “urgent psychological attention is needed.” For both children and parents it is essential because “the child may get tired of carrying a bomb at some point or will have to stop playing soccer because he has a letdown,” explains Campos. “Psychological care has never been looked at and it is very necessary, also for parents when their children debut,” he concludes.