Thursday, October 21, 2021

Comments by Miriam Larsen-Barr, DClinPsy

Showing 18 of 18 comments.

  • I have such an uncomfortable response to the term Shared Decision Making. Any one else wonder why mental health service users have to share their decision making process with the so called experts rather than simply being given all the information and support they need to be empowered to make their own autonomous choices? I know I never wanted to share my power over myself with another person. If sharing means telling people about my choices that’s fine. But it doesn’t mean that here. It means you need the permission of the prescriber to make a choice. Not my definition of being afforded free will. I reckon the biggest barrier to shared decision making is the stigmatising assumptions inherent in the term itself.

  • I gotta say I am thoroughly impressed by your stamina for the hard slog, Peter. I got a bit glum for a while after reading this uphill battle. If even the co-founder of the Cochrane Review gets pilloried and blocked for trying to share the science and advance the practices around withdrawal, then how on earth can a little fish withdrawal researcher and Lived Ex psychologist like me find a way to do this here in NZ. And then I got inspired. If The Peter Gotzch can get pilloried and blocked but carries on anyway, then thats my how question answered: we carry on. It’s rough working for these changes here on the other side of the world. Linking in with IIPDW is a help but the 12 hour time difference makes participating in things tricky.

  • Just want to send you a big message of support as a fellow clin psych with lived experience, who is out and proud. It’s a serious problem with this profession and the training process. Your classmate’s behaviour is an example of this. Over here in NZ a bunch of us started a group called Aotearoa Therapists with Lived Experience Network (ATLEN) and there is a similar group called In2gr8 Mental Health in the UK. IMH managed to get the BPS to create a position statement on the value of lived experience in our profession and me and the ATLEN crew are slowly working on getting something like that in place here. I could write a book on my rages about this topic. Either our experiences and insights are dismissed with a “everyone has mental health struggles” kind of white washing or framed as shameful secrets that can never ever be spoken of. I refuse to sit in a room with my clients and pretend to be an expert, infallible human. I come to this work from the service user movement, and I am not going to suddenly begin perpetuating stigma like that now. There’s a poem on here I wrote about this experience, statistics for the social sciences. I have a feeling you might relate. https://www.madinamerica.com/2018/08/statistics-social-sciences-miriam-barr/

    It was worth the battle though. I spent five years in public services and ultimately decided they are treatment resistant (to turn their own terminology on them). Now I have broken free and I’ve got my own teeny weeny service-user led psychology practice.

    All the very best with the formal process. I’m cheering for you from here.

  • And on January 13th, 2021 Dr Pies realised how utterly paternalistic and discriminatory he sounded the year before and backtracks on his assertion that “patients are not infallible recorders of what their doctors tell them” and just think we are being told these things. Now we get “Just as patients may sometimes misperceive or misunderstand a point or statement made by the psychiatrist, so, too, psychiatrists may err in what they recall or in what they write in their notes.” https://www.psychiatrictimes.com/view/what-we-tell-patients-about-depression-what-they-say-they-have-been-told

    He still manages to escape properly acknowledging that “patients” may say they have been given this message by their psychiatrists because they actually have been. The closest we get is a kind of ‘not all psychiatrists’ cry that reminds me of the ‘not all men’ line I get thrown in the way of an attempt to talk about rape culture. He says only the bad psychiatrists do this, only a few bad eggs, turn your attention elsewhere etc.

    Nor does he account for the many ways this message gets conveyed indirectly, through the choice to focus on medications as ‘treatments’, and the way they always mention the possibility of chemicals first in their list of potential causal factors and relegate the psychosocial dimensions that carry the most evidence to similar status. Most info resources they dish out will mention the brain chemicals too, and as they gave the info it will be assumed they agree with the info. There are many professionals who will share this message with service users, not just psychiatrists alone, it is a team effort, but given it is allll through their textbooks and journals it is clear they are sharing it round and soaking it up all the time.

    Dr Pies gives a good example and he doesn’t appear to be able to tell he is doing it: “My point in the interview was that any valid claim or report regarding what patients have been told about so-called “chemical imbalances” must take into account not only the patient’s recollection, but also: what psychiatrists themselves recall saying; what they intended to convey; and in what context the term chemical imbalance was used. For example, did the psychiatrist say something like, “Your illness is definitely caused by a chemical imbalance”? Or was it more like, “We don’t know the precise causes of depression, but chemical changes in the brain may play some role, along with psychological, social, and environmental factors”? There is nothing fundamentally wrong or misleading, of course, with the second type of explanation.” I disagree Dr Pies. Also what a bloody cop out to be giving someone you have assessed a generic explanation for their troubles such as this instead of an individual formulation based on the actual person before them or better yet, co-constructing a shared formulation together.

    I am not sure what he hopes to achieve by pretending this doesn’t happen and that he has never taken part. I do like that he seems to be trying to make his profession clean up its act and get out of the grip of big pharma marketing. There is no need for him to redact his history or deny reality to do that. Seems that the other psychiatrists listen to him though, maybe they have a shared distaste for uncomfortable facts.

  • Many thanks for reviewing these results and helping share them further, Bernalyn. Really appreciate all the comments above.

    For those wanting to know more about the finer points of the paper, the fulltext is available free to anyone using this link until the 25th of November: https://authors.elsevier.com/a/1XrOtbZg70SRn

    Withdrawal is not something we can realistically put a specified timeframe around and say that’s long enough for everyone. The associations I found with gradual withdrawal were small, and as a number of people point out above, method is only one small part of the picture, and definitely relapse should not be the main outcome being looked at. I was more focused on looking at what helps people succeed than relapse. But relapse did get in the way of success, so looking at ways to assist people to manage that does seem important.

    In another paper I show that having support for the attempt also shows association with success and avoiding relapse during the attempt. And in another yet to be published study habitual use of avoidant coping partially predicted quality of life among those who continued and those who stopped (available on research gate in my thesis), and I think this would likely also be at play during withdrawal, and certainly all the qualitative studies highlight the role of coping too.

    It really is a very complicated process, and everyone caught in the loop of it has all my empathy (and my commitment to keep doing my little bit to help shift things in a direction that might make it easier).

  • This was just the tiniest portion of a much larger project – the whole title was Experiencing Antipsychotic Medication: From First Prescriptions to Attempted Discontinuation. A survey was used to do a quantitative QOL study, and qualitative studies of taking and attempting to stop antipsychotics, and then I did follow-up interviews with a small group of women who had successfully stopped to explore how they maintained their wellbeing during and after withdrawal. The study is complete now, but I continue to carry out further analysis. You can read the thesis on research gate at the link in the article.

    In my QOL study, taking antipsychotics had a *negative* bivariate correlation with QOL but did not make any independent contribution to prediction of QOL over and above age and occupational status when it was entered into a hierarchical regression. There was a negative bivariate correlation between taking antipsychotics and being involved in occupational activities, which I plan to explore further in the near future, see whether the relationship stands up to more rigorous tests. But this part of the research also counters the meta-analysis claims. I could have gone on and on about this subject. More posts will come. Am a bit distracted by trying to get the withdrawal results published at the moment, it’s just so important.

  • I suspect my attempt at being concise might have left some gaps that are open to misinterpretation. While I did mention the third of participants who reported positive subjective experiences, the focus of this blog was on the two thirds with mixed or solely negative experiences who are not acknowledged by the meta-analysis, and who I’m sure we all agree absolutely need to be asked what they experience and listened to when they talk about that – there is a large group who were able to report on these experiences, and their clinicians should be asking them and not assuming ‘everything is fine, because a meta-analysis told me so’. My hope was to convey the message that the benefits certainly do not outweigh the risks for at least a large proportion of those who take antipsychotics. I stopped myself from going on to talk about the related issues of supporting people to withdraw, and informed consent because there is so much to say about them this post would have become unwieldy in length. I didn’t address the issue of whether they should be prescribed in the first place because I was focused on the issues faced by those who have already been prescribed them, and speak of curses, burdens, and hell. I would have done a disservice to those participants who spoke of antipsychotics positively, if I had silenced them the way the Goff et al study and the articles promoting it have attempted to silence those whose lives have been made worse by taking antipsychotics long-term.

    Like others you raise the important issue that people are only able to report on things they are aware of. It is also a real problem that most people are given little information about the adverse effects and are left ill equipped to interpret and perceive them when they happen, not to mention the power inequalities that prevent people from self-advocating and professionals from listening when people do speak up.

    When I wrote, “the only way to tell… is to ask the person experiencing them and to keep asking over time”, I wish I had expanded on what I believe needs to involved in the asking. The act of asking questions is an information-bearing exercise that if done well has the power to help address the issue of our limited self-awareness; the questions we ask and the way we ask them can guide people towards perceiving things they might otherwise have overlooked or been unaware of e.g. From broad open questions into more focused questions like, What is it like to take this medication? What does it do for you? Does it cause you any problems? How does that affect your life? Has it changed your appetite or the way your body puts on weight? Some people have said they feel like zombies, have you noticed yourself feeling groggy, slowed down or sedated since you started the medication? Has it stopped you from feeling your emotions properly? Have you got the same drive to do things? Some people lose their sex-drive, or ability to get an erection, have you started having any new sexual problems since you started the medication? Do you feel like you are in charge of taking it? … into desire and plans to stop, and when/how to do this, withdrawal effects that might occur etc.

    Having this kind of conversation, would inform people of what is important, it would convey that the clinician takes the person seriously, it would convey the message that this clinician is interested in listening to the answers, and share information that there are other options and support available to stop. You are correct that most clinicians are not currently doing this, and this is a very real problem that causes great harm and in my mind equates with tacit coercion, a human rights atrocity on a grand scale – one which I hope to work towards addressing.

    While this blog doesn’t speak to how I think antipsychotics should be used, I would say rarely, other things tried first, full info shared (multiple times given what can be happening at first prescription), very short-term, proper monitoring to reduce and withdraw as soon as possible given all of the well-proven adverse effects, mortality rates etc that come with long-term use; much like the Finnish model. I stand by my statement about giving priority to the perspective of the person already taking antipsychotics – no-one can tell what they are experiencing without asking them, they can form an evidence-based best-guess, but only the individual themselves can confirm if it is the case for them. And if no-one asks them these questions, no-one is telling them these things are important. And at the moment, hardly anyone is asking people. And when they do ask, they only pay attention to the positive reports, and pathologise or minimise the negatives. I am on somewhat of a quest to help make this change. But I can’t bring myself to do the same thing in reverse to achieve it, and I suspect it would probably hamper my efforts.

  • I’m glad you point out this limitation. Important to remember that the participants could only comment on experiences they were aware of having at the time they completed the survey, we need to read the range of comments together to form any conclusions. That said, most who gave wholly positive descriptions of the overall subjective experience were aware of the adverse effects when presented with a check-list to prompt them. But subjectively, these were the experiences that these people gave priority to when asked to complete the sentence “Overall in my life antipsychotic medication has been…” For balance, I should also highlight that among those with mixed overall subjective experiences, there was a small number of people for whom the only negative element was the stigma associated with finding antipsychotics helpful. We need to be careful about going down a path of undermining the participants’ capacity to self-report, because there’s a stigmatising history to that line of reasoning, which has seen researchers steer clear of this kind of study, despite good evidence to suggest that this group of people are reliable subjects worth talking to.

    I had a number of participants who shared stories similar to yours, which is why I think it’s so important for clinicians to keep asking over time, and you raise an important point about the relationship between information and understanding. It sounds like that neurologist sharing information was a turning point in the way you were able to interpret your experiences and know what you needed. In my experience people often aren’t told much about what to expect (or the alternative options), and aside from the human rights problems with this, I suspect it also prevents people from being able to tease apart what is happening for them and advocate for themselves when it’s needed. Do you think having this information earlier would have helped you? Some prescribers fear that sharing a lot of information about adverse effects might create negative expectations and associated placebo reactions so tend to go light in this area. My assumption is that it’s got the potential to improve people’s outcomes.

  • You sure can. It’s available on Research Gate here: https://www.researchgate.net/publication/309485009_Experiencing_Antipsychotic_Medication_From_First_Prescriptions_to_Attempted_Discontinuation

    I can’t fathom how the authors could conclude that their results would be negatively skewed by the absence of people who are most likely to have negative experiences. This would cause a positive skew to their data. I have read SO many papers like this in the last few years, the data says one thing and the discussion turns it into something else. 5 of the 8 authors declared financial ties to pharmaceutical companies, and it is not known to me how many of the papers they analysed also had conflicts like this, but knowing the state of the literature, it’s likely to be most of them.

  • Nail. Head. I did a fancy pants QOL regression for my thesis, and taking antipsychotics did not make a significant independent contribution to predictions of QOL, while occupational status, social support and coping all did. And then I also interviewed this small group of women who had all successfully stopped and they all spoke about the importance of having been able to accept ‘symptoms’ aka their difficult internal experiences, and do something with them, rather than trying to stop them from ever happening or trying to make them go away immediately. Perhaps symptom reduction could even be unhelpful as the ultimate goal, it could be having this paradoxical effect such as we get with the famous thought-stopping experiments (in short trying to stop thinking of a white bear makes us think of them more often and triggers off all our physical stress responses because we transform the thought into a threat). In this light, symptom reduction could be viewed as encouraging people to engage in experience-stopping. Focusing solely on symptom reduction seems to feed into the idea that mental-health problems are aberrant conditions, that symptoms are somehow abnormal and we are failing at recovery when they appear or re-appear.

  • I completely agree re neuroleptics being the better term. I could go on and on about the history of the terms we use and have used. Very interesting to me that the first terms included ‘major tranquilizer’, a much more accurate description than antipsychotic, and similar in meaning to neuroleptic. I used the term most people will recognise straight away, and it bugs me that I perpetuate the bad terminology in my effort to be accessible and concise.

  • Well I’m in the excited camp because such studies are rare as hen’s teeth – but I’ll be watching out for the post-3 year outcomes, which I trust will follow. And just you look – even the two-year outcomes will show a small group who are already doing well at that point. There’s always variation. If only one of the measures being tracked was coping. I am convinced people actually think and do things to manage their experiences through and following discontinuation.

  • Such an exciting study to see coming out. Must get my hands on it early. I’m in the last few weeks of writing up my doctorate thesis and these results would help fill a hole. I don’t think I can wait for it to come out. Prepare to be tracked down, authors! I’ve been researching subjective experiences of taking antipsychotics (n=144), which includes assessing predictors of quality of life as well as exploring attempts to stop, withdrawal experiences, time-to-withdraw, preparation methods, coping during withdrawal and discontinuation outcomes. There’s not a huge amount of existing research that includes people who have stopped AMs. This is an invaluable addition.