Welcome to the Mad in America podcast. My name is James. Today, we are discussing the experiences of people who have attempted to stop taking psychiatric drugs. These experiences are captured in a survey undertaken by the School of Pharmacy and Pharmaceutical Sciences, Trinity College, Dublin, Ireland. Joining me to talk about this work are Cathal Cadogan and Agnes Higgins, both from Trinity College.

Cathal is an Associate Professor in Practice of Pharmacy at Trinity College. His research focuses on developing supports to help people make informed decisions about starting and stopping psychiatric medication. He was recently involved in a priority setting partnership to identify priorities for future research on reducing and discontinuing psychiatric medicines.

Agnes is a nurse, researcher and academic who has recently retired as a professor in mental health at the School of Nursing and Midwifery at Trinity College. She is a former Chairperson of the Board of Mental Health Reform, Ireland’s leading service user organization, campaigning for improvements in mental health services. She is also currently a board member of Kyrie Farm, an innovative initiative combining the benefits of nature, meaningful participation, community and therapy to support mental health recovery.

Their work is part of a wider examination of priorities for future research on reducing and stopping psychiatric medication, and we’ll talk about this as well as the findings of their survey. We’ll also talk about the role that pharmacists could potentially play when people are considering stopping their psychiatric drugs.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

James Moore: Cathal, Agnes, welcome. Thank you so much for joining me today on the Mad in America podcast. We’re here to talk about a recent paper that you both collaborated on entitled, “I Wish It Were More Often Told to People Before They Are Prescribed These Medications How Hard It Is to Get Off Them, A Qualitative Descriptive Analysis of Free-Text Responses to a Survey on Reducing and Stopping Psychiatric Medication,” which was published in the journal Health Expectations in August 2025.

Before we get to talk about the paper, could I ask you both to introduce yourselves and share a bit about your interest in reducing and stopping psychiatric drugs?

Agnes Higgins: My clinical background is nursing. I have over 40 years of experience in clinical practice, research and education and was Professor of Mental Health in the School of Nursing and Midwifery and Trinity in Dublin.

My interest in the subject area and in people coming off medication, I suppose, somewhat arises out of my own clinical experience of seeing people being prescribed medication and then, from a research perspective, I suppose it dates back to around 2015-16 when myself and a colleague were looking at the literature in this area and then we did a small qualitative piece of work within the Irish context.

I suppose what struck me at that time in terms of the body of literature was that while there was a lot done on why people stopped taking medication, it was often done through a compliance lens. People were interested in understanding why people stopped, but the motivation was understanding for keeping people on medication. That led us to think about where the voice of lived experience was in that work. Mike Watts and I did a piece of work with some colleagues that was published in nursing journals back in 2021.

Cathal Cadogan: I’m an Associate Professor here in the School of Pharmacy and Pharmaceutical Sciences at Trinity College, Dublin. I’m a pharmacist by background. I suppose my research is really focused on what is safe and appropriate use of medicines. When it comes to psychiatric medicines, I’ve developed an interest in terms of how people navigate making informed decisions around starting and stopping medications. When I joined Trinity, I was delighted to cross paths with Agnes, and this kind of opened up the pathway to this project and this study that we’re going to talk about today.

Moore: Moving on to the paper, Agnes, you’ve already touched on this a little bit, but I wondered what the motivation was to try and find out more about the experience of people trying to stop or reduce their psychiatric drugs? For example, it was really nice to see in this particular paper the three groups of key people involved: people with lived experience and prescribers themselves, but also family members. Family members quite often are forgotten about, I think, when this kind of work is done. How did the idea for this work come about and how did you go about capturing the responses?

Higgins: The paper that you’re referencing is part of a larger body of work. I have to really give Cathal the credit for that larger body of work, because it was part of a priority setting exercise around identifying research priorities for people coming off medication. We were following a particular methodology called the James Lind Alliance methodology. That is very much focused on getting the voices of key stakeholders, the clinical people, the family and the people with lived experience.

Cadogan: This work formed part of a PhD by Dr. Miriam Boland, who we were supervising, and the initial idea for the PhD was quite different. We decided to take a bit of a step back, and this methodology, the James Lind Alliance Priority Setting Partnership, is really about identifying the top 10 priorities or unanswered questions for research in a particular area. That is a very structured process, and we were very keen to really incorporate the James Lind Alliance and to follow their methodology very explicitly throughout.

From the outset, there was a panel that represented all of the key stakeholder groups. They very much led all of the decision-making within the project. It was quite a step change for us as researchers because essentially, we were handing over the control and the decision-making to them. We facilitated the data collection and analysis, but ultimately, the final say was up to the steering group.

Moore: What kind of people were on the steering group?

Cadogan: We had representatives of each of the three stakeholder groups that you mentioned earlier, so people with lived experience, family members, carers and clinicians. Within that, we were also keen to try and have a mix of people with different experiences, so both positive and negative, when it came to the use of psychiatric medication. To an extent, we tried to have diversity in terms of backgrounds and so on, which was a little bit more challenging to achieve, but we did our best, guided by the steering group as well.

Higgins: I think one of the exciting things in terms of the bigger project of identifying research priorities is that a lot of the time in the mental health spaces, the people who decide on the research priorities in that space are usually the researchers or the clinicians and the voice of lived experience and families don’t really get into that. If we do engage people with lived experience or families, it’s usually when the research has already been decided, and the aims and objectives have been decided. Then we bring people in at that stage, but we don’t really bring people in at the priority setting. That was an exciting piece of this whole research piece that we were starting to get people involved in deciding what the priorities were.

Moore: It was really nice to see quite clearly in the paper that people’s experience had been put front and center, as you say, Agnes, right from the design and the priorities and all the rest of it. On that point, the survey, rather than being a tick box exercise where you had already prepared things for people to answer, it had a free text response so people could write in ways that meant something to them about their experience. I really like the idea of that, but I guess that must have been quite hard to process from a data point of view. Was it challenging to do it that way?

Higgins: This free text response was about giving people a chance to write other comments, and we didn’t prescribe in terms of words. We didn’t ask particular questions in that space, so people could tell us. Now, of course, like any research method, you don’t get the depth that you get if you interview people. But in this context, it was important because we were getting a breadth of responses from lived experience, families and from practitioners. But also, it wasn’t just done in Ireland, so people were answering this online from a number of countries. That, I think, was an important piece because it was also about seeing is this something that’s unique to Ireland or England, or are we hearing things right across various jurisdictions?

Cadogan: There was such a vast amount of data gathered even from that. You’re right, there wasn’t a set list of pre-populated kind of research priorities that we wanted people to take. They could write whatever they wanted. I think when Miriam did her analysis, there were over three and a half thousand unique questions within the data that had to be verified in terms of scope. Then, to distil that down into themes and categories of questions.

I suppose what we really wanted to make sure of was that we captured those views and experiences that might have fallen between the cracks if we had just focused purely on the unanswered questions. It was really trying to add that depth and the insight, which was the added value of this.

Moore: If we could talk about the results a little bit. It’s nice in the paper to see where you’ve pulled out quotes from responders, because it really makes the experience live, maybe in a way that a statistical chart wouldn’t. It gives it so much more human richness. It’s fair to say that some of the responders, whether they’re prescribers, users or family members, were positive about their psychiatric drug treatment experience, but more of the responses were negative. I just wondered if that surprised you.

Cadogan: To be honest, not really, but I think it was important for us that there was that element of the positive experiences in terms of taking psychiatric medication or finding support in terms of discontinuing or that period afterwards where someone is free of the medication. I think it was interesting and useful to highlight that there is potentially light for patients, because again, I know we hear a lot about the negative aspects from the adverse effects to the withdrawal symptoms and even kind of beyond the taper and so on.

I think for us it was important to have that element of balance that we weren’t trying to just portray a negative story or anything like that. I’m very much guided by what people actually put into the survey responses. We weren’t approaching it with any kind of pre-defined kind of lens or anything like that. We were just very open to what people had said.

Higgins: I think that people were positive about the help that medications give to some people in terms of sleep or their thought process. But I think the issue for a lot of people was that the lack of information and education around the challenges in coming off medication and the lack of, I suppose, support. I think that was kind of the big issue for people.

That wasn’t just from people with lived experience, but the clinicians themselves were also talking about the lack of support in this space, including the lack of research evidence in this space. Sometimes people weren’t clear about the guidelines and what evidence base there is.

Moore: There were six main themes identified. So there are people’s experiences of using the medication. There were challenges to reducing and stopping, as you said, Agnes. There were strategies used to reduce or stop, and then outcomes, how people fared after they’d come off. Then what was really important was the fifth one, which was emotional context. As someone who’s been through this process, I found that quite compelling. Again, we must say there were positive and negative experiences reported. But when negative experiences were reported, there was a lot of emotion coming through.

One person, I think, said it was a hellish experience. Also, interestingly, on the prescriber side, there were some doctors who were clearly challenging the concept of the chemical imbalance and educating their patients that this is not the way that antidepressants work. But then another one said that they were really tired of the demonization of antidepressants.

What I really liked about the survey was how the emotion of this is captured. Because to me, coming off antidepressants was a physical thing, but it was a very emotional and psychological experience. So, did you design the survey and this work to capture that raw emotion? Or did it just kind of fall out of the process, because that’s the part that intrigued me most about the work?

Higgins: We didn’t design it, and so I suppose in some ways the fact that it emerged without us asking a direct question tells us something about the level of emotion that this area provokes in people.

I suppose it’s also the piece of that sometimes polarized discussion that happens, and how do we move beyond that. Sometimes, if we get so polarized, we close it down rather than open it up for a conversation. I think that was one of the nice things about it is that you’re seeing multiple voices in this space.

Cadogan: It was quite evident in the responses. Essentially all of that commentary has been distilled down into a top 10 list of priorities, which are really, really important. But again, it’s that added context, and I suppose the human side to what goes on behind these uncertainties and the emotional consequences that people have to suffer sometimes as a result of lack of information, lack of support, lack of evidence and so on.

Higgins: I think it’s important for clinical people to get a sense of the distress, anger and frustration that people with lived experience are dealing with when they engage with our clinical services. Clinical services maybe that haven’t moved on to thinking enough about people’s rights to come off medication. When we started doing some work 10 years ago, there was much more focus on compliance. That was even evident when we went for our ethics review for that small qualitative piece of work, James. The ethics commission was concerned about whether we would be encouraging people to come off medication. Whereas I think in those intervening years, I think it’s great to see that we have now moved to where we are having a discussion about people’s human rights and right to come off medication, and really having a proper conversation around people’s right to information before they go off medication.

Now, in terms of getting that right across the board in clinical practice and services, we maybe have a good bit still to go, but at least the conversation is starting to open up. Even 10 years ago, people were not talking about tapering and coming off medication. It’s great to see that shift.

Moore: One of the things that leapt out for me was that there were quite a lot of comments around how difficult the process of tapering itself is. When people came to the actual process, so many of the comments were, I couldn’t get a liquid form, tapering strips were available, but I couldn’t find any information about them. My prescriber didn’t know about ways to taper off or even that some people felt that their prescriber mandated a withdrawal schedule that they felt caused problems for them.

There was even a comment from a pharmacist who said the only thing they remembered being taught in school about these drugs was that you can’t stop benzodiazepines quickly because of the risk of seizures after coming off. It begs the question: Does this work suggest there’s a bigger role for pharmacists? Maybe pharmacists are the ones who would have the knowledge and experience to actually help people taper.

Cadogan: It’s a very good point. I think in Belgium, there is a scheme being piloted at the moment to help people with certain classes of psychotropic medications in terms of tapering down and getting the right doses. Within the school here, we do have another PhD going on at the moment that is actually looking at the accuracy of some of the practical approaches that people share online if they are following hyperbolic tapering and getting down to the very low doses that aren’t practically achievable with commercially available tablets and require manipulations of commercial liquid formulations as well.

That work is ongoing, and I do hope that we’ll have findings to share within the next year or so. But I could definitely see a role for pharmacists in terms of guiding both patients and clinicians to what is achievable with what’s available with existing formulations, but then also how to achieve it if a preparation needs to be compounded as well.

Moore: I think the paper does a really good job of showing that there really isn’t a cookie-cutter approach to this. There really isn’t one set of rules that you can easily apply to every patient. That is difficult for GPs with very little time to actually spend with a person to design a particular schedule. But I think, Cathal, as you say, that we’ve seen with tapering strips in the Netherlands that there are ways that people can operate more in a shared decision-making way when they are given the time and their experiences are trusted and listened to.

Higgins: Yes, and there’s a body of work, I suppose, in terms of the whole education of practitioners. It’s not just about a physical process of tapering, because as you say, it is also an emotional piece. There’s also that engagement with practitioners from an emotional perspective around understanding people’s desire to come off, and what are the challenges that people may experience in coming off. Not just from a physical point of view, but also in terms of the challenges of where maybe family members might be thinking that that is not a good solution. So how do we engage in that space as well, and how do we support people in that space?

Moore: It’s really interesting you say that, Agnes, and actually, I’m really interested in a way that people view benzodiazepines differently from antidepressants. It’s kind of accepted that benzodiazepines are very short-term and that you should avoid abrupt discontinuation because of problems. But that’s because they seem to be connected to a condition of anxiety, which is seen as episodic. It arises and gives you a problem, then it goes away again, and so benzos can operate in that short window. Whereas with antidepressants, pharma has tried to sell them as a lifelong treatment for a lifelong condition that you are unlikely to remit from. There seems to be much more resistance to actually saying, well, maybe a short-term course of antidepressants is fine. Maybe we should taper people on for a few months, then taper them off again, but there’s natural resistance there, isn’t there?

Higgins: Yes, and it’s the same with medications like antipsychotics with their long-term effects. It was an interesting discussion at the very beginning, we were putting our steering group together, and we were just deciding the scope and whether we were including anxiolytics, antidepressants and antipsychotics. There is a whole fear around that space, around people who have been prescribed antipsychotics and have had a psychotic experience.

Moore: There have been surveys of this kind done in the past, for example, there was one by John Read and James Davies, which is referenced in your paper. When that survey came out, psychiatrists who responded to it said, well, this is sampling bias. The only people who share their experiences are people who have had negative experiences, because the people who are doing well are getting on with their lives, and they don’t fill in surveys. Is that criticism fair? Again, I stress, your paper showed the balance between positive and negative. But I just wondered if psychiatry is going to say, well, these are only the people who fill in surveys that complain. Is there any truth to that?

Higgins: Sometimes when I hear that, as a clinician, I kind of think, okay, statistical numbers versus clinical significance. Let’s stop talking about the bias, talking about if it’s 800 people who have had a negative experience, and who are looking for extra support, and that it’s 800 human beings. I’m not interested in hearing about bias, I’m interested in hearing about what we need to do to support that 800, because if it’s only one person, it’s clinically important. That’s my clinical and my human part of me responding, rather than the statistical researcher.

Moore: I like that answer very much, Agnes. That’s what came through for me in the paper. It presents a very much human experience of what can be for some an extremely challenging process, and one that prescribers might need to reassess their thoughts about.

Cadogan: I think that was the bigger picture, thinking with the other study, was that it would provide a blueprint or a roadmap for researchers to maybe support proposals or funding applications to kind of progress research in this space. That there had been a body of work done with the input of all the relevant stakeholders to say that these are legitimate, unanswered questions that people need answers to. People with lived experience, but also healthcare professionals in terms of how to make decisions in clinical practice. The great thing about having done a formal James Lind Alliance Priority Setting Partnership is that the National Institute for Health and Care Research (NIHR) in the UK does recognize it, and that allows researchers to submit research proposals or funding applications to progress research that addresses those identified questions.

Moore: I was wondering, based on your own experiences and those presented in the survey, if you had any thoughts on what prescribers should be doing to improve the experience for people wanting to safely stop their antidepressants? For example, there is quite a lot in the paper about informed consent, and a few people mentioned shared decision-making type approaches. I just wondered, as clinicians, are there things that stand out for you in terms of how we might improve this process for people?

Cadogan: I suppose ultimately listening to people and accepting their experiences is probably a key thing. One of the challenges with a survey like this is, as you said, they are self-selected samples. We are hearing from people, maybe who have had more extreme experiences, and there are patients obviously who do have good experiences, and we saw that in the paper. It’s a way of trying to figure out how firstly, to identify when people have problems around discontinuation and how best to support them and make sure that they are supported over that period if they need it.

Higgins: I think it’s about a conversation and a dialogue as opposed to what I sometimes call a compliance monologue. Often, when people want to come off medication, the default position historically has been a conversation about why they need to stay on. I think it’s maybe starting from that, from a dialogue perspective, where it’s trying to understand the perspective of the person who wants to come off.

Moore: You’ve both talked about this being part of a wider piece of work, which is reassuring to know. What are your thoughts on what we should be doing to build on this work, and is there a take-home message for people considering taking antidepressants or for prescribers when initiating them?

Cadogan: I think going back to the top 10 lists that we have identified through the broader project, and trying to drum up support from funding agencies to invest in this area. As Agnes alluded to earlier, sometimes the topic of discontinuation of medications can be contentious. It doesn’t always get the funding support that it needs to progress the research and ultimately help people make those informed decisions about what is the right approach. Also, particularly how to identify people who are at higher risk of negative experiences from the process as well.

Higgins: I think that there’s a body of work in the whole education space on the importance of shared decision-making. I think there is a body of work with practitioners around their education so that they can feel confident and comfortable in having that conversation around coming off medication and tapering. Also in having a conversation around what we say our current evidence base says versus where the gaps in the evidence are.

I think that’s an important piece so that we get people to move from the compliance monologue, that they have a comfort in opening up and that they see the importance of that conversation from a safety perspective. Because if people are coming off medication without the information or if they’re coming off it alone and not engaging with practitioners, there is a risk that they come off quickly and they experience all of the negative side of things. I’d like clinicians to see this conversation as part of their safety piece of practice. That having this conversation is about holding people in a safe space rather than being afraid to have this conversation.

Moore: That’s so important. Certainly, I think there needs to be a balance there. The prescriber might think that they are an expert on this particular drug or this particular treatment, but the person in front of them is an expert in their own experience. They need to be allowed the autonomy to work in partnership with the prescriber rather than be prescribed to without the opportunity to talk about fears, barriers, the future and all those things.

Higgins: I think that’s the piece, because we might think we are the expert, but, in terms of the evidence, there are so many gaps that it’s hard to say that as a clinician that we’re experts on anything in terms of coming off, because we’re only starting to have those conversations. We’re only starting to develop the evidence base.

The importance of humility as a clinician and humility in listening to the person that’s on the other end, who is taking this medication and their experience, because we can learn so much from listening to the individual, but equally listening collectively to people’s experiences.

Moore: It’s no surprise that I think this is incredibly important work. Some of the most important work is to get a sense and a feel for where the gaps are between what prescribers might think is happening and what people are actually experiencing when they start these drugs or stop them. You really are, as I said, completing a large piece of a very complex jigsaw here.

I’d like to thank you both and also your other authors, Miriam Boland and Sookyung Kwak. I really look forward to the other work that your school is doing on this important topic.

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The post Examining Psychiatric Medication Tapering and Withdrawal: The Evolving Role of Pharmacists — A Conversation with Agnes Higgins and Cathal Cadogan appeared first on Mad In America.

 

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