"Cuori in Ascolto" ever closer to patients

Interview with Paola Baldassarri, AICARM volunteer

di Francesca Conti

Paola, let's start from the beginning. How did the "Cuori in Ascolto" service come about?
“Cuori in Ascolto” was born from the will of Professor Cecchi, who strongly wanted to create a support channel for patients and their families. I arrived when the project was still in its infancy, but the goal has always been clear: to offer listening, relief and information. We do not enter the medical sphere, but we direct those who turn to us towards reference centers and specialists. Above all, we are a listening point for people who suddenly find themselves immersed in an unknown and often frightening world, especially when it comes to minors, who unfortunately are numerous among the patients.”

How much has the service grown since then?
It has grown a lot, thanks also to communication and awareness. The newsletters, the work of Paolo Palma for communication and the numerous meetings in cities such as Milan, Florence and Rome have contributed to spreading knowledge of the service. Word of mouth among patients and families has done the rest. Today we have exceeded 300 satisfied calls and we receive requests almost daily.

What are the main difficulties in managing calls?
One of the biggest obstacles is privacy. We cannot call back those who leave a message on the answering machine if they have not first accepted the privacy release. Some people do not follow up with the contact, perhaps out of distrust or the difficulty of relating to an answering machine. However, many then try again and accept the conditions. We manage the service three afternoons a week with three volunteers specialized in different areas. Two deal with cardiomyopathies, providing information on reference centers and treatments. Another volunteer follows the bureaucratic aspects related to issuing the license, while a specialist supports patients with work-related issues. We also have the support of a psychologist and a cardiologist, and if necessary we find other experts.

What does being a volunteer mean to you?
I have always been interested in volunteering, but as long as I was working I had no time to dedicate to it. After I retired, I met an old schoolmate who was already involved in AICARM, who invited me to help. At the beginning there were very few of us, but I was fascinated by the idea of being able to help people even just with my voice. Giving relief over the phone is not easy, but listening is essential for those who are in difficulty. Sometimes we cannot solve problems, but not feeling alone in a difficult battle can make the difference. Especially when it comes to parents who find out that their teenage children will no longer be able to play sports due to cardiomyopathy. Helping these families process the new reality is a great responsibility.”

Do you have any plans to improve the service in the near future?
We are working on the implementation of an IT portal that collects and organizes all the requests we receive. This allows us to reconstruct the path of each person who turns to us, facilitating case management. Each volunteer has personalized access based on their role. The portal is constantly evolving: we have requested some changes to make it more efficient and we hope that they will be implemented soon.”

How does the support process actually work?
Our service answers the phone three days a week. If the call comes in while we are operating, the patient is informed about privacy and put in touch with one of the volunteers on duty. If the call comes in outside of hours, the answering machine collects the information and the system automatically sends it to the portal, where the volunteers can take charge of it. If the request is clear, it is immediately assigned to the most suitable volunteer. If clarifications are needed, we call the patient back to discuss their needs in more detail.”

What does “Listening Hearts” mean to you?
For me, it’s a way to be close to people in their time of need. We can’t change the reality of the disease, but we can offer support, information, and a little comfort. Knowing that, even for a moment, someone feels less alone thanks to our help is the most rewarding thing.”