Milano - Clinical service
Out-patient clinics at the NEMO Center include neurology, psychiatry, physiatry, pneumology clinics. Multidisciplinary clinics are also available. Out-patient visits may be first-opinion diagnostic visits or may be second- or third-opinion visits on specific diseases.
The neurology clinics, including child neurology clinics are disease-specific and are run by neurologist who are specifically trained in that neuromuscular disorder or age-range. The same neurologist or child neurologist will perform the first visit and the follow-up ones thus guaranteeing a continuum of care.
The pneumological examinations includes pulmonary assessments including respiratory functional tests and arterial blood gas analysis if required.
The rehabilitative physiatric examination includes the assessment of the devices the patients have, and the identification of possible adjustments or additional devices that may be required. If possible the devices are prescribed during the out-patient visit and additional assessments with the motor and occupational therapists are planned.
- “At school with Nemo” is an educational project for children with neuromuscular diseases. It started as an experimental project and it became a common practice as a ordinary service offered by the Center in January 2013. It is a unique educational project that helps parents on a step-by-step basis to attend and take care of their sons or daughters affected by a neuromuscular disease. The project also includes training in the respiratory and cardiological field. Parents and their siblings are supported to help them face any possible respiratory and cardiology difficulty, potential critical situations and the adaptation to necessary devices if required. The final objectives of this approach are to make the families more aware of the disease they have to face, to make them more proactive and to help them deal with critical clinical and everyday life situations that may occur. There are several professionals involved in this project: the child physiotherapists, the psychologists and the child neurologist who coordinates the actions and oversees the clinical activity. The project offers different types of intervention: individual interventions, interventions with the family, with the child, with the school and with the group as a whole.
- The Breath project is a satellite project of “At school with Nemo” and is addressed to pediatric and not pediatric patients with respiratory difficulties closely related to the disease. In the project “At school with Nemo” prevention and parent training on the recognition of respiratory symptoms are discussed. When the disease involves the pulmonary system, a specific additional support is needed. If this is recognized during an in-patient stay, training is provided before discharge. However, additional support is often required once at home. The outpatient approach proposed, dedicated to respiratory training, allows to maintain the level of training provided during the inpatient stay and to verify the outcomes of the training itself. We expect that this protected discharge and the ongoing follow-up planned visits with the dedicated respiratory therapist will improve the quality of life of the child and his/her family who are taken care of at the Nemo Center and will also intervene positively on the discomforts and costs connected to the reiterative and long hospitalizations usually associated with respiratory involvement.
- Home monitoring of noninvasive ventilation (NIV) in patients with Myotonic Dystrophy. Patients with DM1 frequently have chronic respiratory insufficiency and death from pneumonia is amongst the most frequent causes of death. Regular use of NIV is expected to improve chronic respiratory insufficiency. However compliance to NIV in these patients is limited because symptoms are scarce and patients are therefore unaware of their respiratory insufficiency. The aim of the project is to explore whether home monitoring will improve the patients compliance to NIV and thus improve the patient’s clinical and respiratory parameters and ultimately their quality of life. The project is supported by Vivisol and is one of the examples of the fruitful collaboration between this company and the Nemo Center in the care of patients with neuromuscular disorders having respiratory involvement.
The NEMO Center offers the possibility of admitting patients on a daily basis, in the Day-Hospital Service including 4 beds which allow admission of 8 patients on a daily basis. This is dedicated to patients in whom an in-patient admission is unnecessary but at the same time the patient requires a prolonged clinical monitoring that cannot be offered in the out-patient setting. Often the Day-Hospital service is helpful for specifying the diagnosis and the disease’s phase that the patient is going through. Such approach allows to undertake specific rehabilitative /actions that don’t require a hospitalization but need to be monitored anyway. In the course of the day the patient is subjected to functional tests of motor skills, respiratory and cardiac function, psychological status, swallowing abilities and any other diagnostic procedure or treatment that is required. The daily accesses change in relation to the patient’s clinical plan. The patient’s care takes place in a multidisciplinary context according to the Center characteristics.
The Day Hospital service also allows to provide the necessary training and educational support for respiratory, nutritional and rehabilitation treatment protocols. This is guaranteed at the Nemo Center by the expertize of the professionals involved in the care of these patients and by the activities of a specialized nurse, the Nurse Coach who is especially dedicated to clinical, educational and organizational aspects involved in the disease process affecting both the patient and his/her family.
During the care of patients with neuromuscular disorders specific attention is given to the genetic aspects of these diseases. In the case of ALS, genetic counseling for ALS patient and his relatives occurs in collaboration with the Medical Genetic Unit of Niguarda Hospital and the psychological Service of the NEMOCenter. In the case of patients with hereditary neuromuscular disease who want to discuss on themes of maternity and procreation, a family counseling can also be planned.
During in-patient admission, the pathway of care changes according to the patient’s needs. As needed, patients are subjected to neuromotor, respiratory cardiac, nutritional, swallowing and orthopedic assessments on the basis of the individual rehabilitation planned by the multidisciplinary and multiprofessional team. The patient and his family who are taken care of at the NEMO Center are supported by the psychological service, specialized in the care of severe disability. The rehabilitation program specifically refers to the motor, occupational, respiratory /therapy and also the nutritional and speech ones when necessary. People with severe disability require an in-depth assessment of their communication skills; communication devices such as touch screen systems or eye-tracking augmentative and alternative communication systems are discussed on a patient-by-patient basis.
During the diagnostic and therapeutic path NEMO works in collaboration with Niguarda Hospital. In particular the Clinical laboratory, radiological, surgical, and the emergency departments are available throughout the whole day and there is an on-call service for emergency 24 hours a day, every day.
The collaboration with Niguarda Hospital also involves other professionals like nutritionists, endocrinologists, ophthalmologists, speech therapists, gastroenterologists, anesthesiologists, urologists, and gyneacologists. This represents an added value.
The Center is built to host patients of different ages:
Infancy and early childhood (0-3 years)
The Center has 20 in-patients beds, and of these, 4 are pediatric beds and 6 are semi-intensive unit beds for severe disability.
At the NEMO Center there are in-patient beds, day-hospital service and out-patient clinics. A multidisciplinary and multiprofessional team allows to address the diseases from the early diagnostic stages to the more advanced stages in which patients may have severe disability. The NEMO Center also allows to address the continuum of the disease process because both kids and adults can be taken care of at the same site: the adult and pediatric areas coexist at the NEMO Center and specialists strongly interact in the care of these patients.
People who are most frequently admitted at the Nemo Clinical Center are: among adults, people with Motor Neuron Disease (especially Amyotrophic Lateral Sclerosis), Myotonic Dystrophy, Facioscapolohumeral Muscular Dystrophy. Among children the most common treated diseases are Duchenne Muscular Dystrophy (DMD), Spinal Muscular Atrophy (SMA), Congenital Muscular Dystrophy (CMD). There are also patients with other rare diseases like the periodic paralysis and the non-dystrophic myotonias. The Center is also a referral for Tarlov Cyst Disease.
The multidisciplinary care involves the following specialists:
These collaborate with Clinical Psychological Service
The motor functions, the cognitive-communicative skills, the psychological sphere and the socio-relational context are the basis of the professional multidisciplinary approach at the Nemo Center, that is highly specialized yet affordable and non intrusive.
Services offered by the Center:
Clinical neurology, pulmonology, psychological and neurorehabilitation activities in the neuromuscular field during day hospital and in-patient admissions
Outpatient clinics dedicated to neuromuscular diseases
Nurse Coaching/Case Manager services to facilitate discharge from the Nemo Center to the patients homes, to other rehabilitation units or to other local health structures
Research and training
The complexity of neuromuscular diseases requires a highly specialized and multifunctional intervention of rehabilitation, education and assistance. At the Nemo Clinical Center, different disciplines interact with each other throughout the course of the patient’s care. The main objective is to preserve the autonomy and the familial and social participation in line with the disease’s natural history and the evolving needs. In addition, the objective is to slow the progression of symptoms and to allow adaptation and compensation of residual muscle function to guarantee the best possible independence in the activities of daily living. It is necessary to consider the rehabilitation process as the way to accompany and support the patient and his family in everyday life, thus slowing down the development of disability and possibly improving quality of life. Often patients with severe disability who are admitted at the Nemo Center expect “the Cure”, meaning ‘the pill’. Talking about ‘cure’ in neuromuscular disorders is a complex matter. It requires more time than usual because a ‘pill’ may not be available, but the Nemo Center has a patient-centered approach, and part of the ‘cure’ is also listening and interacting with the patient and his family on clinical and research matters, on national and international standards of care and on ongoing trials.