12/05/2025
On the occasion of World Nursing Day, which is celebrated every May 12, we spoke with Miguel Ángel Tremiño, Internal Medicine nurse at the General Hospital of Elche, in charge of treating adult patients with rare diseases who depend on this area, to give visibility to the important role played by this profession with patients with rare diseases and how is their day to day at the Hospital.
"I am your right-hand man in the hospital": the voice of the nurse who accompanies patients with rare diseases
In one of the corridors of the General Hospital of Elche, between the outpatient departments of Internal Medicine, there is a door that opens many times a day. Behind it works Miguel Ángel Tremiño, nurse, but also companion, manager, listener and, as he defines himself, "right hand" of many patients living with rare diseases who come to the center to receive treatment that tries to improve their quality of life.
Over the past nine years, Miguel Ángel has turned his workspace into a place of care that goes beyond the diagnostic tests and reports that doctors make to patients. He cares for people living with rare diagnoses, many of them complex and chronic. And it does so in a role that still has no official name within the system, but which is essential for those who pass through it.
"I'm not a case manager officially, but I do that work every day. I make sure that everything flows smoothly for the patients. Sometimes I spend more hours a year with them than the doctor himself," Miguel Ángel explains with an indelible smile. It is a fact that he is passionate about what he does.
A consultation that becomes a shelter
Her day is intense. She performs infusions, telephone follow-up, diagnostic tests, health education and manages dozens of tasks that ensure adherence to treatment for those who come. "My goal is that the patient is safe, is happy, that it is not difficult for them to come to the hospital, that they adhere to treatment, that they feel controlled and that, in the end, they can see coming to the hospital as something less traumatic, especially at the beginning," she says.
In his practice, some patients have been coming in every 14 days for years. "The biggest challenge is to be able to dedicate the time they really need. Because they are not only rare diseases, we also see people with other chronic pathologies, cardiovascular, osteoporosis... But the minority ones require special attention, closer, more constant. And sometimes that is difficult to sustain without a clear structure and without a specific protocol that supports all the care they need."
Miguel Ángel is part of that group of professionals who support the system from the bottom up. His practice is, for many, the only place where they can talk about how they feel, beyond the purely medical. Something similar to a haven of peace and disconnection from the outside.
"Many times, the patient comes in not knowing what's wrong with him. And when they are diagnosed with a rare disease, their world falls apart. It's as if they were suddenly told they were in a science fiction movie. It is something that happens to us constantly and we have to know how to act and, above all, how to accompany."
And then, the complementary treatment to the pharmacological one begins: that of explaining, supporting and making them understand. "Little by little, by talking to them about the disease, about their family history, making them see that this is real but that it is manageable, we get them to adapt and, above all, that they do not lose adherence. And that, in rare diseases, is gold".
Routine as a relief
For many of his patients, going to the hospital is part of their life, not part of their illness. For this reason, Miguel Ángel has worked to ensure that the office is not just a place for 'doctors'.
"In the beginning, there were treatments that lasted six, seven, even eight hours. There wasn't even a TV. I brought one from home so they could watch movies, but after a while they were all asleep," he laughs. Now we do betting pools as a group. We do things together. And that changes everything. It changes how they live that day.
The link also changes. Patients have the ability to contact him directly. "Yes, they can call me if they have doubts. Sometimes I am the one who raises the alarm when I see that something is not going well. The doctors see them every so often, but I see them every week, every two weeks. I know if they are better, if they are worse, if they are sad."
"There should be a recognized figure, in all hospitals,
that is dedicated exclusively to patients with rare diseases".
"In the end, I am their gateway. The figure of the nurse in these cases is fundamental. Sometimes they call me for small things, sometimes for very important things. But they always know I'm there.
One of Miguel Ángel's great contributions is his ability to coordinate and simplify the hospital life of his patients. To achieve this, he has learned to know his patients and their needs well, but also the hospital's own circuits.
"I try to make sure that when they come to the hospital they come only once and have all the necessary tests done: blood tests, CAT scans, cardiologist... Whatever, but in one morning. It doesn't make sense that a person who comes every 14 days to the hospital has to come six more times just for tests."
He also takes care of the patient's environment. Because, as he says, "not everything happens in the hospital".
"Many patients have family conflicts. Couples sometimes do not understand the situation, they see the disease as a defect, and that generates a lot of pain. I have seen separations, loneliness. It would be important to have sessions with the families as well, so that they understand what is happening. So that it does not all fall on the patient".
Even the patients' children are part of the routine. "Sometimes they come with the children because they can't leave them anywhere. I get them to paint and hang their drawings in the office. People ask me about them. It's a way of normalizing something that is already part of their daily lives."
What is missing: structure, training and vision
When asked what he would change about the national healthcare system, Miguel Ángel is clear: "There is a lack of structure, a lack of specific training and a lack of a professional figure dedicated to this, the case manager for rare or low-prevalence diseases," he reflects with hope, knowing that this is something that must happen.
"I am doing the work of a nurse case manager without being a nurse case manager officially. I was trained thanks to a pharmaceutical company and I learned over time. But it can't depend only on the will of the professionals. There should be a recognized figure, in all hospitals, who is dedicated exclusively to patients with rare diseases."
It also lacks the awareness of several related services to facilitate the interventions. It would be necessary to evaluate the possibility of establishing circuits that would allow us to have the drugs available when the patient arrives, thus optimizing the time they have to stay in the hospital.
Without belittling other patients who also have very difficult situations, many of the patients with rare diseases depend on treatments every 2 weeks for the rest of their lives. Making things easier makes their lives easier.
And he concludes with a request that does not sound like a demand, but like common sense: "These patients do not come for one-time treatment. They come every 14 days, for the rest of their lives. Let's not give them any more obstacles. Let's make their life easier, because it is difficult enough outside the hospital".
Miguel Ángel is one of the many nurses who play an indispensable role in the lives of patients, whether or not they face rare pathologies. For them, he is more than a nurse: he is someone who sees them, understands them and cares about every detail of their treatment and their lives.
In a system where rare diseases remain a pending issue, his work is an example of how care goes beyond the clinical. Of how, sometimes, what you miss the most is a friend who says, "I'm here, and we're going to get through this together."
