Category Archives: Peer Support

It’s Not Recovery, It’s Remission or Positive Management

By Marvin Ross

Anytime I criticize the recovery concept in mental illness, I get push back. I’m not surprised but the notion that recovery empowers people and gives them hope does not make sense. What I was pointing out in an earlier post was this. If you can’t recover fully or improve significantly, then recovery suggests that you weren’t trying hard enough and you are a failure.

It is only in mental illness among all the chronic illnesses where recovery is talked about. The dictionary definition of recovery is this:

“the act or process of becoming healthy after an illness or injury : the act or process of recovering. : the act or process of returning to a normal state after a period of difficulty. : the return of something that has been lost, stolen, etc.”

People can recover from a bad cold or a broken bone but they cannot recover from a chronic illness regardless of what they do. Recovery is a term or concept that comes from addictions and is misapplied to mental illness. A recovered addict is someone who has stopped using addictive substances. Someone with a mental illness cannot suddenly stop being mentally ill. What they can do with the help of health professionals is to deal with the symptoms as best as can be accomplished and to reach a state of good management of the disease – a form of remission.

If you want to call that recovery, OK but it isn’t a true recovery. Whatever caused the illness in the first place, cells running amok as in cancer, immune systems attacking its own body as in autoimmune diseases, tangles and placque in the brain from Alzheimer’s, remains. Medical management has not progressed to the point where these conditions can be reversed. The best it can do is to help with the symptoms and to provide supports to make the life of the sufferer as good as it can be.

The concept of recovery does not take into account the variability of diseases. Symptoms are not always exactly the same for everyone nor are they of the same intensity. When someone is diagnosed with a chronic illness, they (and the family) get an explanation of it from their doctor. They are told what to expect and what the treatments are. Those treatments will include medications, education, and other relevant strategies.

This is where lived experience comes in. That is another stupid term in my opinion. Because each individual is different, their health care providers ask about their symptoms, severity and how various treatment modalities are working. The doctor knows the disease, the science, the treatments but only the ill individual knows how he or she is coping and what may or may not be working and the potential side effects. That is the lived experience they bring to the appointments and it goes for every malady.

The lived experience as part of the therapeutic alliance between health care providers and their patients has always existed. Lived experience reminds me of a panel I was asked to participate on for a “new innovation” – patient centred care. I did not endear myself to the hospital staff and doctors when I asked what was such a big deal. Central to hospitals and doctors is the patient. Without us, they have nothing so if patient centred care is such a big deal, where did the patient fit in before? It and lived experience are but fads and buzz words.

The proponents of lived experience then usually jump to the need and importance of  peer support as part of the therapeutic regimen. That’s fine as long as what it does is to provide a buddy with information, education and coping strategies. Most, if not all, chronic diseases have support organizations. The cancer society, arthritis, lupus, MS, you name it and all do that. But that peer support is not a substitute for the medical specialties.

When anyone is first diagnosed with a chronic condition, they are given some parameters. If you have type I diabetes, the parents (because it is from birth) will be told that it will be necessary for the individual to take insulin for their entire life and to be very careful about diet.

That insulin analogy is often used with schizophrenia. The person is told that they will likely have to take medication for the rest of their lives like an insulin dependent diabetic needs to take insulin. It might not be the best of analogies but it is used and it certainly makes the point. I suspect, but I don’t know for sure, that the much maligned idea that there is a chemical imbalance in the brain with mental illness was nothing more that an analogy to explain that which cannot be explained.

We all ask the cause even though there is never a good explanation. Why do I have inflammatory arthritis? It’s autoimmune but what does that really mean? My rheumatologist would probably shrug and say your immune system suddenly decided to attack your body. Why? No idea. How? No idea but take this and it may help reduce the inflammation (or not).

The patient or family asks why schizophrenia, bipolar, severe depression and the doc, at a loss, says there is a chemical imbalance in the brain. Well, maybe not but the brain is messed up and all that does is to give what sounds like a plausible explanation for the unwanted ailment.

The bottom line in all this is that when you do have a chronic illness, then you manage it as best as it can be managed so that you have as good a life as possible with the deficit. It’s not a cure and it’s not true recovery but it is the best that is available now. So, enough with this recovery talk. It is time to be realistic.

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Peers are not Medical Professionals

Marvin RossBy Marvin Ross

When it comes to people with illnesses helping and providing support for those newly diagnosed with the same illness, I am supportive. It makes perfect sense for people to have a support network of their peers. Many disease groups have some variation of this. When I was involved with the local chapter of the schizophrenia society, there was an excellent buddy program. Family members with newly diagnosed offspring were matched with an experienced family member who could give advice, support and comfort.

It is only in mental illness where lay peer support people are becoming quasi professionals and involved with all aspects of the illness. This, despite the research that shows that their therapeutic role is of little value. The Mental Elf Blog reported on the most recent evaluation of these programs and found that:

“there is currently little evidence to support the clinical effectiveness of this intervention for people with severe mental illness.”

So, imagine my surprise to find that there is a social worker from Quebec described as a psychiatric survivor who has developed a program called  Gaining Autonomy & Medication Management (GAM) Training for Peer Support Workers. This program was held in Toronto on December 11 but it has been given in a number of other locales throughout North America.

According to a paper written on GAM, “the approach was developed to take into account the many perspectives and relationships that users have with their medication, their knowledge and practices, their experience of mental health workers, and a thorough analysis of the current knowledge of psychotropic medications both in the field of biomedical research and in the human and social sciences.”

GAM also “recognize(s) the symbolic aspects of medication and require(s) recognition of its multiple, and at times contradictory, meanings in the lives of users and various individuals involved in psychiatric treatment.”

Now I have no idea what this means, particularly the symbolism medication may have. If you have a headache, you take an analgesic. Is that symbolic?

The only paper that I could find on Pub Med or on the internet is the one that I quoted from above. It is claimed that this strategy qualifies as best practices in Quebec but the reference link is dead. Many of the references are not there. They did mention research with 26 people with serious mental illnesses and provided a table to demonstrate the results of their research. That table shows that there was a decline in the number of medications taken at the end of the program. Is that good or bad? No idea. They may think so.

If you have a serious mental illness, your doctor will prescribe medication. That doctor is usually a psychiatrist who has six years of medical school, one year of internship, and five years of residency training to qualify as a psychiatrist. He or she should be well aware of what to expect from what is prescribed and should discuss the effects of that medication on you including side effects. The prescription will be dispensed by a licensed pharmacist with five years of university training who will pick up any drug-drug interactions that the doc may have missed.

Both the doctor and the pharmacist have ethical obligations and responsibilities to you as well as legal responsibilities dictated by their regulatory colleges. Your buddy, the peer, has none of the above education, ethical or legal responsibilities. They might say by way of support, “that sounds like a side effect. I had something similar but it went away in a few days. If it doesn’t, better see the doctor or talk to your pharmacist”. Perfectly legitimate. But you really should not be talking to him about the legitimacy of the prescription or whether you should even take it. To be perfectly pragmatic, you can sue your doc for malpractice and/or report him to his regulatory body, but what of your lay peer?

If you had diabetes, would you learn from a peer how to manage it or would you work with your endocrinologist, dietician and other regulated health professionals?

Why, when it comes to mental illness, is it considered alright to get your pharmaceutical and treatment advice from a lay person?