MANAGING CARE
Building Your Personal Advisory Team
Diane Breslow, MSW, LCSW
Who doesn’ t want to feel in control?
When facing uncertain and unfamiliar territory— illness, trauma, and transitions— most people fare better if they receive information( not too much but not too little either) and if they can develop a plan( albeit a flexible one). I once read a quote from a family member of a loved one with a neurodegenerative disorder:“ The worst day of this disease was the day of diagnosis. The best day was the day that we, as a family, understood that we could find ways to handle it. What we needed was a sense of control— and some power.”
That sense of control can come from many different realms, people, and perspectives, both professionally and personally. First we will look at the why and the how of building your core healthcare team. Then we will explore other sources of support that can help to fortify and sustain you along your journey.
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The Rationale for Team Care
It is an understatement to say that PSP, CBD, and MSA are intricate, complicated diseases. Movement disorders involve so much more than disorders of movement. Besides affecting mobility, these diseases have an impact on the autonomic nervous system— activities of daily living, sleep, mood, emotional well-being, communication, cognition, and social and family relationships. The diseases are chronic, meaning that they continue over a long period of time. In addition, they are progressive, which means that symptoms increase over time. Given this complexity and impact, we can easily understand that a single healthcare discipline cannot address all of an individual’ s and family’ s concerns. Rather, these diseases must be treated holistically. Clearly, medical diagnosis and treatment are the foundation upon which you will build your team. After you have established a relationship with a movement disorders neurologist, many other healthcare disciplines, types of interventions, support, and support programs will play a significant part in treatment and management.
The Goal of Team Care
The overarching goal of team care is the delivery over time of the right blend of clinical care, information, education, emotional support, and programs designed to improve quality of life. Ideally, this kind of interconnected or holistic care is provided in a coordinated, seamless manner— across settings, professional disciplines, and time. In many instances, team care requires an individual( carepartner, family member, or care manager) who is designated— and dedicated— as the point person, communicator, and keeper of appointment schedules, team members’ contact information, patient information, etc. Last but not least, you want a care team that views patients and families as essential partners in their own care. In other words, you want to participate in the development of a continuous care plan and in ongoing decision-making.