Earlier today I was informed by the director of our county mental health agency, where I work only a few hours per week, that I am now officially banned from sending emails to the psychiatrists, unless it concerns a particular client. The reason for this ban? I sent them a list of suggestions about how the agency might work to reduce the high death rate among the mentally ill (see below for the text of the email I sent.) Apparently, the new chief psychiatrist was offended, and decided I was simply too radical to be allowed to speak to the medical staff. So much for willingness to hear different points of view…..
There are some advantages to being censored however, as anyone knows who has ever had a book or movie banned. People start wondering, why did that happen? So the next step (after talking personally to the director about it) will be for me to go public, and question why my suggestions were seen as so radical as to require censorship, and why the county refuses to even allow discussion of alternatives to current forms of treatment, even as people are dying. I’m sure the local newspapers will be open to a column in the editorial section on the subject……
Here’s the text of my email, sent to all the county mental health workers:
LCMH’s program to integrate primary care with mental health care is great as one angle to take on reducing death rates in our clients, and there also has been some focus on shifting to neuroleptics with somewhat less hazardous known side effect profiles for clients who do OK on those other neuroleptics, but I think we need to address much more than that if we are to really have a sufficient impact on minimizing deaths.
A few thoughts on what LCMH might additionally do to reduce deaths caused or partly caused by neuroleptics:
Let consumers know that we want to collaborate with them in safely minimizing the use of neuroleptics. Let them know that our success in this will partly depend on their willingness to use alternatives and to learn more about other ways of managing their issues.
Make sure consumers are fully informed about the risks to their health from taking neuroleptics, so they are more likely to be interested in working to reduce their use, and so they don’t end up being exposed to risks from neuroleptics without informed consent. (This means not just telling them once, but making sure they really “get it” about the risks.)
Provide groups to educate consumers in how to shift to relying more on alternatives to medications, so they will experience less need for medications.
Provide written material that educates consumers on how to shift to relying more on alternatives to medications.
Attempt to identify types of clients who are currently getting started on neuroleptics, but where alternative approaches that are available in the community might work if tried. Figure out how to encourage trying these alternatives and giving them a reasonable chance to work before neuroleptics are tried.
Identify clients who may have needed a certain level of neuroleptics in the past, but who now might possibly do well with less or no neuroleptics. Work out with them a process of weaning off, which would include assistance in handling withdrawal reactions and with gradually shifting to alternate forms of coping. Have a good relapse plan in place which includes the possibility of resuming higher levels of medication as one option, if necessary.
Specifically avoid using forms of psychoeducation that imply that certain forms of mental problems can only be handled by medication, as these discourage attempts to handle the problems in other ways. Instead, always frame medication as a possibly temporary measure, which could become unnecessary in the future if other forms of coping become more successful.
Make sure consumers are informed about the likelihood of withdrawal effects when neuroleptics are discontinued abrubtly (the fact that relapse is 3-5 times more likely in abrubt withdrawal.) This will help consumers avoid mistaking withdrawal effects for a need to constantly maintain medication.
Make sure alternative treatments are as available in the community as possible. For example, make sure that clinicians are available who are trained in psychological approaches to psychosis, so they don’t just see “more medication” as the only option when a client experiences a psychotic symptom.
Rather than just focus on the risk to clients of reducing or getting off neuroleptic medications, acknowledge that risks of reducing or getting off must be weighed against the possibly life threatening consequences of staying on the medications, and acknowledge that the balance of risk is different for each person, and varies as well over time. For example, trying a reduction may be too risky at one point in time, but may make good sense later.
All of these steps could be done without really adding new programs, though adding new programs, such as an early intervention program for psychosis that prioritized a non-medication approach, could also be an important part of the solution.
I’d be curious to hear your thoughts about these options and their potential role in reducing death rates…….
Ron Unger
oh Ron, go for it! and let us know how it goes…
I think you’re absolutely right…if you handle this well you can make it work for you.
I salute you for being able to work in the system at all…god knows it needs people like you.
best to you.
Wow! I just did a piece about the Emory University – Doug Bremner-thing on my Danish blog, last night. This will make a perfect follow-up post today.
I’ll never forget the jaw-dropping (the amount of naiveté among the psychiatrized was new to me, back then) reply, the owner of a social networking site for “mentally ill” ppl here in Denmark wrote to one of my comments at the site’s forum, that pointed out the fact, that there are safe and effective alternatives to the system’s drugs-only-approach to “mental illness”: “But if there were any such alternatives, I’m sure, they would offer them!”
That’s really one of the biggest problems: the wide-spread ignorance among the system’s users, and often enough even among staff.