[NYAPRS Enews] Anthony: Musings on Consumer Self-Management

[Harvey Rosenthal]

NYAPRS Note: Some very timely and personal comments from the 'Godfather'
of psychiatric rehabilitation, our beloved Bill Anthony.I meant to send
this last year...and just found it now.

 

Musings on Consumer Self-Management

William A. Anthony, PhD, Executive Director of the Center for
Psychiatric Rehabilitation, Boston University, and Member of the CIHS
Steering Committee
<http://echo4.bluehornet.com/ct/17942979:20530837419:m:1:1800456727:2106
FA40894E3967CA8D02F9F4EA07A5:r>   September 28, 2012

In my professional role, I have been a strong proponent of people
managing their own health behavior change processes to the greatest
extent possible. However, it wasn't until I had to manage a serious and
potentially long-term disabling condition of my own (multiple sclerosis)
that I came to understand the challenge of health behavior management
from the insider's perspective. By examining my own attempts to manage
my MS, I thought I might learn something about the issues related to
self-management
<http://echo4.bluehornet.com/ct/17942980:20530837419:m:1:1800456727:2106
FA40894E3967CA8D02F9F4EA07A5:r>  of severe mental illnesses. I draw this
comparison between severe mental illnesses and MS as a metaphor only to
promote understanding of the tremendous number of issues that a person
with a serious health condition must manage (no one-to-one relationship
intended). 

As the complexity of my condition and the sheer number of new people and
programs involved in my life began to look overwhelming, I did a quick
analysis of my healthcare situation with respect to what factors needed
managing in order to increase my chances of success. I found the numbers
startling. For example, I am now involved with:  

8 different healthcare provider organizations; 
9 different types of healthcare provider personnel;
5 different kinds of meds/vitamins/medical equipment;
5 different sources for paying for meds/vitamins/medical equipment;
4 different payers of MS related healthcare services; and
3 different MS advocacy group memberships.

Just keeping track is becoming a part-time job. And the above healthcare
categories do not include care un-related to MS (e.g., optometry,
dentistry, dermatology, internal medicine); non-health related services
sometimes associated with a severe condition (e.g., housing services,
transportation services, employment services); or individuals and
agencies involved in healthcare that people with MS often use (e.g.,
therapists, trainers, personal care assistants, neuropsychologists,
SSA).

Though it could be MS related fatigue, it tires me out just adding all
of these up. Managing any serious, potentially long-term condition is a
lot of work. And people with MS don't have to confront the level of
coercion, ignorance, prejudice, and discrimination that people with
severe mental illnesses do.  

This metaphor stimulated me to think further about what resources could
help manage a severe condition and the resources ostensibly trying to
help. Several self-management tips stand out that primary and behavioral
healthcare providers can encourage among their clients:

*	Identify what each provider can offer and use them accordingly.
Try to organize providers by time and location to avoid running around.
Ensure that you see them as much (or as little) as you need. Sometimes
it is as difficult to refuse unnecessary help, as it is to ask for it.
Engage a provider in helping with this task. 
*	Seek out opportunities for interactions with peers who have the
same health condition. Talking and listening to people I have met in my
MS support group and at educational conferences and the like is
invaluable to learning how to manage my MS and my MS treatment
providers. Peers often share helpful, personal material with each other
that they may not share with a professional.
*	Be clear and assertive about what goals you want to achieve.
Professionals may suggest MS medications and other medical treatments
because they assume you want them - without checking how their
suggestions affect your goals.
*	Try "alternative" resources. Not too long ago people with MS
were advised that exercise would worsen MS. Now, exercise is seen as a
valuable, evidence-based intervention. If you believe an alternative may
help you, you may be right.

Self-management is not easy or simple, and needs to be seen for the task
that it is. The system sometimes seems to thwart people's difficult
self-management efforts. That is when a peer, a helpful provider, a new
resource, or the passage of time itself can help people in their desire
to captain their own healthcare ship. 

For more on health behavior change and consumer engagement
<http://echo4.bluehornet.com/ct/17942981:20530837419:m:1:1800456727:2106
FA40894E3967CA8D02F9F4EA07A5:r>  and other integration topics, visit
www.integration.samhsa.gov
<http://echo4.bluehornet.com/ct/17942982:20530837419:m:1:1800456727:2106
FA40894E3967CA8D02F9F4EA07A5:r> .

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