Sant Joan Hospital Advocates for Home Care for ALS Patients

Under the motto 'ALS at Home', the Alicante-Sant Joan d'Alacant Health Department held its eighth conference on Amyotrophic Lateral Sclerosis, focusing on promoting home care for affected individuals.

According to the department's manager, Juan Antonio Marqués, "as a healthcare institution, it is our duty to listen to what patients demand, especially when it comes to a disease as challenging as ALS. In most cases, people wish to remain in their homes without hospital admissions, and our professionals work to ensure that continuity of care with the highest guarantees."

During the conference, held at the Sant Joan University Hospital in collaboration with the ADELA CV Association, legal, clinical, social, and emotional aspects related to the disease were discussed.

In the initial session, the president of the department's Bioethics Committee, Carmen López, and ADELA-CV's social worker, Paula Pérez, emphasised the need to disseminate the content of the ALS Law and the available resources.

Specialists in Pneumology, Paula Fernández and Violeta Esteban, explained how comprehensive respiratory care is implemented beyond the use of ventilators. They detailed the operation of devices such as the cough assistant, types of tracheostomy tubes, and necessary stoma care, as well as the importance of proper coordination with the Home Hospitalisation Unit.

Meanwhile, Dr Carmen Ballesta, a specialist in Endocrinology and Nutrition at the Fisabio Foundation, addressed the evolution of nutritional needs in the different stages of the disease.

Family doctor José Antonio Valera described the role of Primary Care in the early detection of ALS, clinical follow-up, emotional support, and coordination between care levels.

"ALS affects not only the body but also the mind and family. In Primary Care, we are the first look, the first suspicion, the constant and close contact. We coordinate, accompany, and support, trying to make the hard journey of this disease more dignified and humane and less lonely," Valera stated.

From the hospital perspective, complex case manager nurse Mar Luri shared her personal experience in caring for people with ALS. "ALS patients, their families, and caregivers are fighting for better healthcare, and with this eighth conference, we want to continue raising awareness and visibility of the disease among the population, as their fight is a fight for everyone," she noted.

The event also featured testimonies from caregivers like Yxis Gutiérrez and Paco Pedrera, who shared their experiences in supporting people with ALS. Gutiérrez highlighted the importance of personal care, oral hygiene, respiratory secretion management, postural changes, and emotional well-being.

Finally, there was space for the personal testimony of an affected individual, Paco Pedrera, who recalled the experience of a charity run organised with the support of his colleagues from the Benidorm fire station and narrated his personal case as a caregiver for his wife, an ALS patient.

The medical director of the Sant Joan d'Alacant University Hospital, Norma Iranzo, closed the conference by highlighting that addressing ALS "has required us as a healthcare system to work in a network, listen more, coordinate better, and place the person and their environment at the centre of care."