Patient versus Consumer

I totally agree. And I was just ranting and raving to someone the other day about the disparity between health coverage for physical and mental illnesses. I have excellent health insurance, but if my psychotherapy of any sort goes over 1200 a year, I'm paying out of pocket. Period. Which yes, I have a choice of who I can see (since I don't have an HMO) but how many $100 - $150 sessions does $1200 pay for? Not many. So I'm forced to go somewhere that takes payments according to my income, which so far I've been lucky and received good care. But even if I wasn't, I wouldn't have any other alternative. So back to the consumer/patient thing, I think it's obsurd and insulting. ************************************************************************************* Hi, Allison. Many thanks. My point, exactly.

WOW ! John, that is well written, consise and hard hitting. I only wish that this would get picked up by "main stream" media. Hang in there and keep writing !! Michelle *************************************************************************************** Many thanks, Michelle. To other readers: Please feel free to take issue with me. Unless your name is Tom Cruise I have absolute respect for your views. I'm far more interested in getting discussion going that shoving my views down people's throats. Good discussion is how I learn. Fire away.

Here in Britain we get called "service users" i guess that may be marginally better than being a consumer but I'd still prefer to be (accurately) called a patient. We also have little or no choice in which psychiatrist we see. Different health care areas run different systems but unless there is a complete breakdown in trust between psychiatrist and patient you get to see the doctor who serves your area. I once managed to get onto someone else's list by dint of refusing to be sent back to see the last guy again (he had set me a target that I had to meet before he would treat me and then when I met that target announced that I obviously didn't need treatment or I couldn't have met his target!?) but that took a lot of bravery to say that I wasn't going to see the psychiatrist on whose list I should have been. When I was part of a support group I took part in a conference on a new approach for treatment and blew my top at being referred to as "these people". I wasn't sure awhat I wanted to be referred to as instead but that felt so patronising - the professionals there were surprised that I was one of "these people". As I present as middle class and intelligent (I am both) and wasn't a gibbering wreck at that time, they had all assumed I was a professional from one of the other agencies. These are the people who make the policies which govern how we are treated when we are at our rock bottom and as far as I was concerned, while paying lip service to the idea of PC they were making patronising assumptions about the kind of moral and social standing of the "service users" (read patients/morons. That too makes me mad! ***************************************************************************************** Hi, Virginia. I don't live in the UK so I don't have a feel for how "service users" sounds to people there, but from this side of the pond it strikes me as way worse than consumers. No wonder they refer to you as "these people." The implication is that people who need to "use services" are some type of lower life form than people who don't. I belong to DBSA, which is a patients' organization, and - no surprise - we refer to ourselves as patients (though some do use the C-word). The people in DBSA are pretty high-functioning. We blend right in. The only way someone would know we were a patient was if we told them. NAMI, which was founded by family members, uses the C-word. They have high-functioning patients in their organization, too (their president has bipolar and their last president also has bipolar). But they also have a lot of low-functioning patients, typically grown sons and daughters of the family members who make up the bulk of NAMI's membership. One of my blogs discusses the distress these family members go through. People with serious mental illness who are low-functioning, unfortunately, tend to be able to be spotted from a mile away. A casual observer at the convention could easily walk away with the impression that ALL patients are like this. So anyway: I got to hang out with a bunch of my DBSA buddies at the NAMI convention, all bipolars. One of them is on the board of DBSA. He has an MBA and is extremely affable. Someone - a family member, apparently - told him he didn't look like a consumer. The lesson I learned: Ditch the term consumer. Consumer has a terrible connotation. It implies low-functioning patients unable to look after themselves. This is often the only experience many family members have had, and this creates a totally wrong impression (just like your observation about clinicians who only see us at our worst). One more example: I also attend psychiatric conferences. These are psychiatrists talking to psychiatrists. They ALWAYS use the term, patient. NEVER, in all the conferences I have attended, have I ever heard any one of them refer to our population in a derogatory way. True, their patients often drive them crazy, but they're entitled to bitch about that (especially because they're right). These days I run into a psychiatrists that I met at previous conferences, and we greet each other like old friends. The lesson: Keep the term, patient. People understand what the term, patient, means. Everyone has been a patient at one time or another, so there are no unfortunate connotations, no US and THEM.

John, I hear your anger and agree that mental illnesses are not given the priority in funding or respect. However, there is some good to be said about the "consumer" mentality, whether you're treating a heart problem or a head problem. I've seen too many people passively accept whatever health care they're given by the first provider who treats them without questioning their care or realizing they should go elsewhere if the first provider is not helping them. Sure, our system doesn't make this easy, but we do need to take charge of our own care, or have an advocate (family member or friend) do it for us if we are unable to. ************************************************************************************* Hi, Lynne. I absolutely agree with your assessment of the problem. I just happen to think the "solution" has made things much worse. Yes, the term "patient" can imply a passive recipient of care. With this illness, if you are a passive recipient you are never going to get well and stay well. But the same can be said for a heart patient. If you continue to eat fatty foods and not exercise after a by-pass operation you will most likely need a second by-pass in about five years, if you're not dead first. HealthCentral refers to me as an "expert patient," a term I'm very comfortable with. My mission is to make everyone with our illness "expert patients." The only way to get well and stay well is to take responsibility for managing our illness, and we need to know as much as we can short of getting an MD for that to happen. So here's the situation as I understand it: "Patient" is the only term universally understood by everyone ("consumers" shop at Wal-Mart). So let's not ditch a reasonably good term (though not perfect) for an absolutely horrid one. Let's instead work on some suitable adjectives to dress the word, patient. "Active patient," "educated patient," "proactive patient," and even "super patient" work reasonably well. Please keep posting. It was very good to hear your views.

I don't like the term "service user" myself it feels patronising to me - I'd rather be a good old fashioned (but informed) patient. However - there is a tendency to use the term all the way through our health service for both physical and mental health patients so I guess at least we seem to have achieved parityof a very patronising sort! I know what you mean about lower functioning patients standing out a mile - I can spot them several streets away from behind just by the way they move (I've spent a lot of time in hospital in the past as I think I've said before) but the hospital staff also meet the rest of us at times and I'm fed up with being discounted during the good times just because I need help during the bad ones. I'm lucky now that my family doctor knows me well and respects me for the advances I've made since we moved over here about 5 years ago and will listen to me and take the time with me when I need it. She actually uses me now as an expert patient when she is teaching students so that they can see that mental health patients don't have 2 heads or all sit gibbering. She is very concerned to let the new students see that they can't judge every book by its cover! Apparently a common comment after I have left the room is: "you'd never know by looking at her would you?"! Getting in at the training level if at all possible (these are 1st year medical students) is one of the places that we can really make a difference to attitudes. I love to get the chance to dismiss some illusions too! *********************************************************************************** HI, Virginia. A few years ago, I had the chance to talk to some med students at the University of Connecticut. You're right - if you can reach them at this stage in their training you can make an impression. Two of us - high-functioning bipolars - informally talked to some very likeable students who had not yet shed their ideals. Maybe I should be doing more talks like this.

I have to admit, the term consumer had me confused for a while. What did my shopping habit have to do with mental illness, I pondered. What is a consumer I thought. Then I had one of those Ohhhhh moments. One of those, look both ways and make sure no one caught me being uncool, like tripping on the sidewalk in public. Anyone who sees a doctor is a patient. Period. Who thought that one up anyhow? I suppose they have one part correct in using the word consumer: we spend a boatload of money on medication and medical appointments, along with missed work, yep, it adds up. Unfortunately, we are a targeted market of people, consumers that pharma love to see at the check out line at the pharmacy. ****************************************************************************** Hi, Stephany. Thanks for bringing up pharma. I run into drug reps at psychiatric conferences. Their job is to entice doctors to prescribe their company's products. They don't expect to encounter patients at these conferences, and I suspect the bulk of them have never talked to a patient in their lives. They really don't know what to do with me. To them, I'm obviously at the very bottom of the food chain. Patient? Consumer? To them we're just suckers.

I have a 10 year-old daughter who was diagnosed 4 years ago with bipolar disorder. She is not a consumer. It, in a way, consumes her. To me, the term consumer implies that I chose to buy or partake of something. I would never choose bipolar disorder. There isn't enough money in the world to entice me to 'choose' it. She is currently on a combination of 4 different medications (which is a good thing considering she used to be on 5 different meds)--she will be on meds her whole life. It is a slap in the face anytime she is referred to as a 'consumer'. However, nothing makes me more upset than the Tom Cruise thing. My child doesn't need more vitamins and exercise--anyone who subscribes to that theory is invited to come live with my daughter unmedicated for 2 months while I go vacation on a secluded Caribbean Island. The facts are as follows: Bipolar Disorder is real. Bipolar Disorder is serious. Both adults and CHILDREN can be diagnosed with Bipolar Disorder. Medication is a godsend. Patients are diagnosed with Bipolar Disorder. Consumers purchase orange juice, automobiles and Happy Meals. ****************************************************************************** Hi, Conni. I agree with you all the way. I have a very good relationship with Demitri and Janice Papolos, co-authors of The Bipolar Child. I will be hearing them at a conference in September on early onset bipolar, and look forward to having something to report.

I reckon you just about have your plate full at the moment with your book about to come out and the need to keep up with the newsletter, website and blog - when things settle down a bit then maybe you could think about doing some more talks to students. We don't want you overdoing things and ending up ill - that would rather go against the ideals that you expound wouldn't it! In the meantime how about encouraging some of your high functioning acquaintances to make the teaching thing part of their mission in life? Don't fall prey to "superman syndrome" there are others of us out here who with a bit of your expert guidance could take on some of the world. You don't have to do everything yourself! Stay well! ********************************************************************************* Thanks, Virginia. My book coming out will be a major challenge to my staying well. You're right. Easy does it.

John, After reading all the comments on this issue, I realize I may have been naive in assuming the word "consumer" was a good thing. I like the idea of taking charge of our own care and becoming educated, but I see what you all mean by the negative connotations "consumer" has, and "service user" seems even worse! I'm ready to stick with "patient," especially if we can put an "expert" or "educated" or "pro-active" in front of it. Lynne

I was diagnosed BP II correctly in March after many many years of the wrong treatment and I actually work as a office clerk in a community mental health center. When I started there I was confused initially when they continued to term those seeking help as "clients". Now I have a new managing entity who refers to those seeking help as "consumers". It was to supposedly give the impression that they could choose where they received services. Their original thought was to be PC and have the people feel better about how they were classified. Most of our "consumers" are indigent and are the under-served population and have absolutely nowhere else to turn to, since our state is literally discharging patients out of the hospitals too soon and leaving them dangling in their communities. So where is their choice? I agree totally with your view. We are patients and should be considered as such.

Hello!

While I agree with most of what you are saying - especially the part about needing universal health care - I really don't see the point of having to come up with yet another term to describe what it is that we go through as supposed "bipolars".  It will only serve the purpose of giving others another name to call us and another box to put us in.  Psychiatrists/Mental health professionals/etc. will jump on the band wagon and gleefully call us by our new "term".  What ever happened to us just being people, who happen to have a condition of the brain or whatever you want to say to describe the collective symptoms that we experience?  People with heart disease are people first.  They are not consumers or heart diseasers.  I say call us people - and then each individual can go ahead and use whatever terms he/she wants to describe the effects of having a "brain disease" or condition or whatever!  And, while I appreciate your trying to come up with someting new and less stigmatizing, the new term will only partially and incompletely describe the pain and agony, the joy and the hope that we experience.  Let's focus on that, instead of focusing on finding another name for ourselves.  I believe we have many more important matters - such as universal health care - to be concentrating on.  Thank you for your time and consideration.

 

Kay