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The Need for Consumer Satisfaction Surveys

The Need For Consumer Satisfaction Surveys In Mental Health Systems

It seems logical to me that there should exist consumer satisfaction surveys and that consumers should be included in the development of the survey instrument. After spending some time involved with just such a process, I have come to the conclusion that consumer participation is actually necessary. This belief is based primarily on two reasons. The first is that NOT including consumers is a little like trying to do a comprehensive ethnographic study without ever going out into the field. It's bad practice and doesn't make sense. The second reason is a little more personal, and comes out of a firm belief that consumers need to be partners in our system of care. Our job is not simply to "consume" what is being offered; our job is to guide providers into offering meaningful opportunities for change - as individuals and as part of a system.

I'm going to assume that everyone here agrees that asking consumers directly whether or not we are satisfied with the mental health system is a good thing to do. If you are only partly convinced, let me offer a reason to encourage you to get behind the idea. In its current incarnation, the mental health system in this country relies heavily upon clinical providers of services to translate for them. By this I mean that consumers have been trained to raise concerns about the system to their case managers, who are expected to translate the concern into clinical terms to their supervisor, who is then expected to translate the same concern into terms that can be addressed by management, who then translates it further into a programmatic/funding/political issue to be addressed by the powers that be.

The irony here is that I have just described an efficient system. Consider how many possible bad translations could occur in this scenario, assuming everyone attaches some importance to the expressed concern and moves it along to the next level. Next consider how much time it could take for the concern to be addressed. And now, imagine that at least one of the translations got botched and everyone was on vacation when it came across their desk, and you have some idea of how frustrating it might be to express dissatisfaction with the current system.

You have just heard my argument for doing consumer satisfaction surveys, and now I'd like to present an argument for doing them confidentially. To complicate things, let's pretend that the hypothetical system I described before is:

The only service provider that offers economically affordable services and is conveniently located, and/or

Exerts some control over basic activities of daily living - acts as a Representative Payee, or is a supported employer, or perhaps landlord, and/or

Is filled with well-intentioned, NICE people whom no one wants to get in trouble

and I think you would agree that asking consumers directly whether or not we are satisfied with services is tricky. Not only do some of us have a brain problem that is described as paranoia, but we also have life problems that, in connection with our dependence upon the system, make us particularly uncomfortable when giving criticism. I do not mean to make it sound as if we feel threatened by the system all the time or even to suggest that bad experiences with the system are so routine that people expect bad consequences for their honesty. I am, however, saying that if you want to know what we truly think and feel about the system we are being asked to rate, many of us are much more likely to be totally honest if we are protected by confidentiality.

Folks who wish to furnish you with their identities should have a mechanism for doing so.

Including consumers in the design of the survey instrument may help you to think about us more accurately. Some of us have children, some own homes, some have gone to graduate school, some live in highly supervised group homes and apartments, some have transportation problems, some have enough money and some don't. If you want people to describe themselves to you it only makes sense to let them be the architects of the options from which they might choose. By including consumers in the process of deciding what options should be made available to check off on the survey, you will likely end up with more varied and accurate options AND begin to see the "population" of consumers more clearly. Everybody benefits from that kind of clarity.

And now a word on simplicity.

All of the major mental illnesses, whether they are thought or mood disorders, are diseases that affect energy. A colleague of mine with schizophrenia describes it as "easy to get mad, easy to get hurt, easy to get tired." Conventional wisdom in the a local support group with which I am affiliated is that ours are diseases of energy: too much in mania, too little in depression, and the rest of the time just about right. If you're going to ask people with compromised energy to fill out a survey, make it simple. Offer to help - in person or on the phone. Perhaps someday it could even be done on-line. Understand that your target population is locked in a lifelong struggle that is draining their energy. Be generous with your deadline, and forgive the large number of people who just don't have the energy to fill it out.

Finally, a word on reporting on the data collected. The word is crucial. It is just plain wrong to ask people to use their energy to fill out a survey if your not prepared to give the results back to them in some useable fashion. If you're not sure what would be useful, ask us. It has been my experience that consumers, myself included, have two major questions that we'd like to have answered:

Where can I get the best help for my problem ?
What can you tell me about myself and my illness that will help me with my recovery ?

The answer to the first question may be found in the category of global information that can be used to help make decisions about services. Although it is true that in my state, recipients of services from the public sector are not allowed to choose where they receive those services, it is important to provide us with information on our service providers as if we were. It is important for us to draw some inferences about the quality of our CMHCs, and to be able to evaluate the performance of our respective CMHCs and the State as a whole. This kind of information allows us to be the advocates we need to be in order to do our part in improving the overall system of mental health care. Those of us with serious mental illness have a sizeable investment in seeing that services on a global level are of the highest quality.

Providing us with the results of a statewide consumer satisfaction survey is a great place to start.

It may be too expensive to send survey results to every person who receives a survey, and I can understand that. But the name, address and telephone number of the person to contact for survey results should be published, along with clear instructions on how to obtain copies of written reports. Written is operative here: it will not do to only have a traveling road show with slides and charts and graphs as your feedback mechanism. Research has shown that for most people with a severe and persistent mental illness there exist deficits in executive functioning. Executive function deficits - memory, attention, concentration, organization and attention to detail - are best overcome with hard copy.

I have already said that it is my belief that consumer involvement in the consumer satisfaction survey process is necessary. It is also my belief that it be done confidentially, accurately, simply, and with a built-in mechanism for providing reports to the persons without whom there would be no data to collect: the consumers.