The Neuro’s ALS Program is a model of compassionate care
The Amyotrophic Lateral Sclerosis (ALS) Program at the Montreal Neurological Institute and Hospital – The Neuro has an interdisciplinary team that delivers outstanding, tailor-made care to meet the needs of patients. The program which integrates research and patient care is having a huge impact on the lives of patients and caregivers.
The ALS Program, led by Dr. Angela Genge and Toni Vitale, was started in 1998 with a small interdisciplinary team (physician, nurse, occupational therapist and physiotherapists). The team soon realized they needed to modify the way they were providing care to ALS patients and their families who required a different care delivery approach. Over the years the team has continued to evolve, adding professionals specialized in delivering care required specifically by ALS patients such as a respiratory therapy.
Each team member plays a critical role in planning the care and meeting the needs of patients and their families. The team is currently developing a model of care that includes quality performance benchmarks for the timely and proactive mobilization of resources such as equipment, home care, respite and palliative care.The program carries a strong guiding belief that is evident in the team’s work: dealing with the biology – the disease – is only one aspect of care. Going beyond the immediate medical needs of the patient, the team takes a holistic approach, providing organized care for ongoing challenges and connecting the patient and their family to educational programs and support groups in the community. Team members understand the devastating impact of the disease and are a compassionate presence for patients and their families coping with this terminal illness.
They respect individual wishes and limits yet still push the obstacles and boundaries in our system to provide stellar care. They also remind patients and families that although they may not be able to control the physical part of the disease they can control the decisions they make with regard to treatments and recommendations.
In addition, the team’s leadership is a driving force working to raise national and international awareness of ALS, its devastating impact on lives, the lack of treatment and the crucial need for more research and fundraising.
The ALS Society Quebec – a friendly face
Every second Monday for over two years, Kate Busch, an employee from the ALS Society of Quebec sets up an information table in the waiting room of The Neuro’s ALS Program/Clinic. Kate provides brochures about the disease and lets patients know about the ALS Society’s services She is a lifeline for patients who are newly diagnosed with ALS. They are devastated. Kate lets them know they aren’t alone and that the Society is there to provide help and support. She is a friendly andkind face that patients and caregivers look forward to seeing. “I’ve come to know almost everyone in the clinic. We catch up and have a friendly chat about their children and lives,” says Kate. “ALS is a disease that slowly robs people of their abilities; people are always grieving one loss or another. I’m there to share a laugh or a smile and to inject some humanity back into their lives.”
Kate also acts quickly when patients start to lose some of their autonomy. She remembers one patient who could no longer use a walker to get around, but was on a long wait list to get a wheelchair. Kate was able to intervene and expedite the arrival of the wheelchair.
“Everyone in the clinic appreciates Kate’s presence and the ALS Society of Quebec. It is a source of information and camaraderie. Its priceless,” says Dr. Angela Genge. “ALS is an isolating disease. Over time the lives of our patients and their caregivers gets narrower and narrower. They give up their jobs, hobbies, and friends. Coming to the clinic and having a chance to socialize and connect with others normalizes their lives. The Society also lets people know they don’t have to cope with the disease and their journey on their own. There is help, support and there is someone to lean on.”
Co-Directors: Dr. Angela Genge, Director, Clinical Research Unit, Neurologist; Toni Vitale, ALS Clinical Nurse Specialist.
Dr. Rami Massie, Neurologist; Ritsa Argyriou and Stefania Ianni, Administrative Officers; Carmela Maloney, Clinical Dietitian; Marie-France Lanoie, Physiotherapist; Kendra Berry, Occupational Therapist; Valentine Weber, Speech Language Pathologist; Mia Lanno, Social Service; Lana Kim McGeary, Spiritual Care Services; Dolores Bertone, Respiratory Therapist; Kristiana Salmon, Clinical Research Coordinator and the nursing staff on 3South.
Associated Team Members: Dr. Mark Angle, Associate Director of Professional Services; Dr. Peter Goldberg, Respirologist; Dr. Carlo A. Fallone, Gastro-enterologist; Dr. David Valenti, Radiologist , Emilio Cabanas, Assistant Chief Respiratory Therapist; Programme National d’Assistance Ventilatoire à Domicile; Yvan Leduc, Orthotics Specialist.
There are also community resources that assist in care delivery, including the ALS Society of Quebec; the CSSS’s (all the local CLSCs, rehabilitation centres and longterm care facilities), NOVA and the Constance Lethbridge and Lucie Bruneau rehabilitation centres.
To know more about upcoming clinical trials, please contact Kristiana Salmon, BSc, Clinical Research Coordinator, Clinical Research Unit at 514 398-1779 or by email: [email protected]