The six-year RADAR study looked at discontinuing and reducing antipsychotic medication – our new podcast spoke to lived experience advisory panel members and the study team to find out what they’ve learnt.
The topic of mental health is getting more recognition and understanding than ever before. For people struggling with their mental health, it’s also becoming clear that being fully informed about the different options and ideally having a say on what treatments they try can have a huge impact.
This is true when deciding what, if any, medication to take, for how long and at what dosage. Schizophrenia and other related conditions like psychosis are associated with long-term disability, physical illness, and premature death.
The main recommended treatment for them is medication, often long term. This means it’s particularly vital that wherever possible people have information about an input into their treatment journey.
This was the aim of the recent RADAR study, and subsequent research papers and podcasts. Find out more about the study below, and then listen to the podcast here.
The RADAR study
RADAR (Research into Antipsychotic Discontinuation And Reduction), which ended this year, was a fascinating look at the process of helping people reduce or come off their antipsychotic medication in a tailored and supported way.
It shone a spotlight on why, regardless of outcome, educating and supporting people on their treatment journey is so important.
When we approach any topic about mental health, it’s important to recognize everyone’s needs and circumstances are different. For some people, antipsychotics work for them, and there’s lots of research which shows that they can help with some of the more distressing symptoms of psychosis, hallucinations or hearing voices.
For others the negative side effects of the medication outweigh the benefits, and sometimes reducing or coming off completely can give people a better quality of life.
The six-year study was set up to look at how people on antipsychotics might reduce or stop their medication, if they wanted to, with support, and what effects this might have on them – both positive and negative.
For patients reducing their medication this was done gradually, roughly once every two months or even more slowly, over a period of around a year. Each patient had a customized, flexible schedule drawn up and was assisted by their psychiatrist.
McPin supported the involvement of people with personal experience of being on antipsychotics and facilitated the lived experience advisory panel, which was made up of eight people with expertise in antipsychotic medication, either through personal use or as a supporter of someone with psychosis.
The panel met regularly throughout the study to discuss its progress and topics like recruitment and findings.
Hear from the advisory panel and research team
Listen to our two-part podcast on the study, where you’ll hear from lived experience advisory panel members, plus study lead and Professor of Critical and Social Psychiatry at University College London, Joanna Moncrieff, and clinical research fellow Mark Horowitz, as they share insights and what they’ve learnt over the six years of RADAR, and – in many cases – from living with psychosis for much longer than that.
Listen to part 1 and part 2 now or read the full transcript below
You can also read the papers on the RADAR study:
A lived experience perspective on the results of the RADAR trial the results of the RADAR trial
Please note: We hope the podcast provides information and advice that both clinicians and people on medication will find useful, but please be aware we can’t offer guidance to people about their own medication or how best to reduce antipsychotic medication. If you have questions about this, please speak to your GP or psychiatrist.
RADAR episode 1 – transcript
Introduction
Katherine: The topic of mental health is getting more recognition and understanding than ever before.
For people struggling with their mental health, it’s also becoming clear that being fully informed about the different options, and ideally having a say on what treatments they try, can have a huge impact. This is true when deciding what, if any, medication to take, for how long and at what dosage.
Schizophrenia and other related conditions like psychosis are associated with long-term disability, physical illness, and premature death. The main recommended treatment for them is medication, often long-term. This means it’s particularly vital that wherever possible people have information about an input into their treatment journey.
I’m Katherine, and I’m on the McPin Communications team. We’re a mental health research charity, and we exist to transform the sector by putting the lived experience of people affected by mental health issues at the heart of research.
In this two-part episode, we are talking to clinicians and people with lived experience about how and why to give people choices about their antipsychotic medication.
We hope it’s information and advice that both clinicians and people on medication will find useful, but please be aware we can’t offer guidance to people about their own medication or how best to reduce antipsychotic medication. If you have questions about this, please speak to your GP or psychiatrist. Hopefully this podcast will provide interesting insights into the vital issue of managing medications when living with psychosis.
When we approach any topic about mental health, it’s important to recognize everyone’s needs and circumstances are different. For some people, antipsychotics work for them, and there’s lots of research which shows that they can help with some of the more distressing symptoms of psychosis, hallucinations or hearing voices.
For others the negative side effects of the medication outweigh the benefits, and sometimes reducing or coming off completely can give people a better quality of life.
The RADAR study
Like so many things in mental health, having choices and personalized care is incredibly important, that is underpinned by good quality information and advice. In this episode, we’ll be talking to researchers, clinicians, and lived experience advisory panel (or LEAP) members from a study called Radar, which stands for ‘Research into Antipsychotic Discontinuation and Reduction’.
They’re going to share insights and experiences from the six years the study has been running, their experience treating people managing antipsychotic medications, and – in many cases – from their personal experiences of being on antipsychotic drugs for much longer than that.
The study was set up to look at how people on antipsychotics might reduce or stop their medication if they wanted to with support and what effects this might have on them, both positive and negative.
This is not the only study of its kind. There are also projects in Denmark and the Netherlands exploring the same issue. RADAR asks whether a slow, tailored approach to reducing medication can help people function better in their daily lives and how it affects their chances of having a relapse.
The study ended in January 2022 and was done as a randomized control trial, where about 250 participants were either supported to slowly reduce their medication in a way that felt right to them or continue with their treatment as usual. It measured success through their ability to function in day-to-day life alongside key things like relapse symptoms, quality of life, and side effects.
For patients reducing their medication this was done gradually, roughly once every two months or even more slowly, over a period of around a year. Each patient had a customized, flexible schedule drawn up and was assisted by their psychiatrist.
McPin supported the involvement of people with personal experience of being on antipsychotics and facilitated the lived experience advisory panel, which is made up of eight people with expertise in antipsychotic medication, either through personal use or as a supporter of someone with psychosis. The panel met regularly throughout the study to discuss its progress and topics like recruitment and findings.
Interview 1 – Jonny Benjamin, LEAP member
First up, we’ll hear from LEAP member, Johnny Benjamin, who actually has his own mental health charity called Beyond. Johnny’s been on and off medication for the last 15 years, and he’s going to share some of his experiences with side effects, the importance of the psychiatrist relationship, and the benefits of peer support.
JB: Yeah, it’s been definitely challenging. Not just my relationship with the medication, but then my subsequent relationship with the psychiatrist or whatever care I’m receiving. I find that a really difficult conversation to have.
I’ve got a psychiatrist now that I feel I can talk to, really talk to, about the medication, the side effects, the dosage, and she talks to me in a sort of language that I understand, and to my dad, who’s my carer, in a language that he understands as well, which helps.
But yeah, all my previous psychiatrists it’s like, they haven’t wanted to have a dialogue. It’s more like, ‘this is how it is, you need to take this medication on this dose and I don’t care about the side effects’ and I’ve always found that really, really difficult.
Maybe it’s a lack of understanding about the medications and what they do, a lack of time, I think, you know, it’s always so rushed and there’s lots of different side effects and it’s not so easy, it’s not so quick to talk about it.
Even the very first time I was put on medication, the side effects, things like that, just were never explained to me, it was just like you have to take olanzapine, you have to take 20 milligrams, and that was it. That was literally it.
And I was like, I don’t even know what, what what’s olanzapine, what does 20 milligrams mean? And maybe it was mentioned, ‘oh, well, you know, you’re going to gain weight’, and things like loss of libido, maybe it was just mentioned, but I think it’s really hard because, particularly when you get your diagnosis and when you’re first unwell, there’s so much going on I was struggling with a lot. There was lot to take in.
And so the medication bit, I just wish… I wish it would have been explained to me more in-depth, but also in a more sort of regular way, not just, ‘okay well, I told you about it once and don’t want to talk about it anymore’.
Now again, my psychiatrist, we talk about things like loss of libido and what we can do. Like she’s actually keen to see like, if she can help me with side-effects, which again I’ve never had before. And I think it would have made a real difference.
Nine months since taking my medication I went completely cold turkey and that’s quite common that people do that. And I ended up back in hospital because I did that and I didn’t understand why. And now, at the age of 35, I realize just a little change in your dosage can make such a huge difference, both mentally and physically. And then I was embarrassed about stopping taking my medication and to be honest I’ve always found it very difficult to be honest with psychiatrists and GPs about the way that I use my medication.
Because I have kind of varied my dosage over the years and yeah, I’m just desperate for some relief from the side effects. I do need to talk it through with someone, but it’s the fear of that judgment again, so yeah, I just do things my own with the medication, which yeah, it’s probably not the best.
I haven’t always been honest with family or friends because there’s a worry with me, because I’ve had a few relapses and my dad worries. Like if I alter medication, if I come off, it’s like, oh my God, what you’re doing, you’re going to become unwell again.
And so I think it’s hard with psychosis or Schizoaffective Schizophrenia, because there is more stigma and there’s a lot more misunderstanding and fear around, oh God, I’m gonna get unwell again, and when I’m unwell it’s really not pleasant.
And it’s really hard because I remember once I came off Clozapine, which is like the strongest anti-psychotic, and I did it in a really, really bad way. And I was really ill and kind of had to cover that up as much as I could. Because I was desperate for people not to know that I’d come off my medication.
People say things like, ‘oh, you should have looked after yourself better’. If I’d say one thing about the modern world I guess, is that there’s lots of online forums where other people share about coming off their medication or how they’re dealing with their medication or side effects, and again, I find support groups, in-person or online, really useful because I just realize I’m not alone with the medication issues that I have, and that really helps.
So it’s very common, I think, that people on medication want to make a change because of the different side effects. And then secondly there are ways to do that. I know it’s really tempting to just rush it and just get the medication out of your system as quick as possible. But I’ve learned the hard way that it’s so important to do it in a very like, controlled way.
And I guess the third thing is about doing it with someone else or getting some support and guidance with it. As I said, I’m lucky now I’ve got a psychiatrist that listens and understands and that supports me.
So maybe you’re with a GP that you can’t talk to, but then, you know, have a look and ask to see another GP in your surgery, if you can, or join a group, like for example, Rethink the charity have groups all over the UK and I’ve joined in the lived experience groups and that’s really helpful.
I would say don’t be afraid to ask questions, they might not always get answered, but for example some of the medication changes how sensitive you are to sunlight and my skin was usually quite good with sunlight, and some medications I took would make me burn really easily in the sun. But I’d always be a bit embarrassed to say why am I burning?
So, yeah, I think there’s no such thing as a stupid question. I know that’s kind of a cliche, but it’s not, particularly when it comes to the medication.
It’s hard when you’re told this is your illness, this is the medication you have to take, and it’s given to you in a way that like, there’s no other alternative, but there is and so keep an open mind and yeah, explore and research.
And also just to say as well, it’s very easy to feel like a failure sometimes if it doesn’t work out. I’ve been on so many different journeys with different medications and at the moment I’m on Quetiapine and I’ve been trying to come off but I just can’t do it at the moment. I know myself, I need to be in a really, really, really good space physically and mentally, and then maybe I can come off in the future, but I can’t do it at the moment.
And I used to beat myself up for that, but now I’m just like, you know what, it’s just not worth becoming unwell again. So I’m just going to wait until I get to a better place physically, mentally, and then try and come off in a controlled way and hopefully that might work.
Interview 2 – Professor Joanna Moncrieff, RADAR study lead
Katherine: That was LEAP member Johnny, making some really great points about finding the right support, taking it slow, and why you have every right to ask questions.
Next, we’ve got the RADAR study lead Professor Joanna Moncrieff, who’s a psychiatrist and academic an expert in the field of antipsychotic medication. She’ll be talking about the importance of clinicians and patients collaborating and why trying to reduce may be positive even if people still stay on medication or go back on medication at a later date.
JM: The majority of people who are diagnosed with psychosis or Schizophrenia get put on anti-psychotics and the majority of them end up taking anti-psychotics for many years at a time, and often they are never given an opportunity to see if they could try and come off those drugs.
Now we know people don’t like taking them, particularly because they dampen people’s emotions and have this, what people often refer to as a zombifying effect. So they’re not pleasant to take and we also know that they are physically dangerous. They can be harmful to the heart and the metabolism and lots of other bodily systems, and they cause a whole range of physical adverse effects.
So the RADAR study was set up to investigate the outcomes of helping people to have a chance to try and come off their medication in a slow and gradual and planned way, because obviously people do come off their medication all the time because they don’t like it but very often in those situations, they will stop the medication suddenly. And we know that if people stop medication suddenly they often experience many adverse reactions, some of which are related to the process of withdrawal itself.
So I think the mental health services have just really got to take patient autonomy and patient choice much more seriously and really offer people choices – not a choice between, you know, do you want to spend the rest of your life on this drug or that drug, or this slightly higher dose or slightly lower dose, but the choice of trying to manage without drug treatment, and that does mean that you have to commit resources to supporting people through that process.
But I think it’s just completely unacceptable not to be offering people that choice, whatever it costs in terms of resources. It needs to be possible for clinicians and service users to work in a much more collaborative way so that service users can openly express their preferences and what they really want out of life.
And clinicians can be honest about what their agendas are, because sometimes their agendas are not just to help the patient but to protect society as well. And sometimes that’s okay, but it needs to be transparent so that people know what the parameters are for them.
I think historically clinicians have not listened enough to how difficult it is for people to live fulfilling lives on these medications; how impairing they can be, how difficult they can make it for people to go about their day-to-day lives, to go to work, to take part in satisfying leisure activities and have relationships.
There is, I think among many clinicians, an assumption that the best thing for everyone is for someone to avoid an episode or a relapse of their condition, whatever the cost involved. Some service users might completely agree with that, but some might not, some might feel that the price they pay by taking long-term medication that has debilitating and impairing effects is not worth it, and that it might be better to take the risk of having a relapse every now and again, in order to have periods in-between free of medication and feeling more functional.
And that seems to me a perfectly logical way to evaluate the possibilities of managing your condition and that we should support people if that’s what they want to do.
Taking antipsychotics is generally a pretty awful experience for people and therefore we should try and avoid it if we can. In an ideal world we would have safe places where people could go when they were having a psychotic episode, where they could maybe try for a while and see if they recovered without drug treatment in a safe and supported place.
I get a lot of emails letters from people who are taking anti-psychotics who are desperate to try and get off them, and from family members who are desperate to see if their family members can get off them or at least reduce them. And those communications are really moving and list how awful it can be to have to live with these drugs, which some people have to do, but nevertheless, it’s still a real burden for people.
And that’s why I thought it was so important to be doing a study that showed that it was a legitimate thing to investigate whether you could help people to come off antipsychotics in a supported manner.
I think that RADAR shows that even if the process is not successful, there is something about trying it that empowers people and leads them to maybe feel more satisfied or accepting of their medication if it transpires that maybe they can’t reduce as much as they’d like or discontinue completely – at least they’ve tried and at least someone has helped them to try in a proper supported manner rather than just said, ‘no, no, you can’t do that’.
Interview 3 – Karl Lorenz Willett, LEAP member
Katherine: That was Professor Joanna Moncrief talking about the importance of giving people choice in their medication journey. Our third and final story in this episode is from LEAP member, and author, Karl Lorenz Willett.
Karl has difficulty expressing himself verbally, so he’s requested that McPin peer researcher Davino read a script he’s prepared about his experiences of psychosis, his struggle to accept medication, and how being involved in the RADAR study has supported him.
KLW: My name is Karl Lorenz Willett and I have struggled with the devastating psychological condition of Schizophrenia for over 40 years.
Living with Schizophrenia is profoundly disruptive in how quickly I can think clearly, so much so I asked someone to be my voice here today with you. I’ve written a lot about my experiences and you can read my more detailed account on my website, www.karllorenzwillett.co.uk.
You asked me about medication. My story also communicates medication compliance, faith, hope, and the message that it takes heroic courage to battle with this illness. I have to deal with untamed, natural thought forces. But, despite annoying negative thoughts, there’s also mischievous energy in my condition; vivid things in my mind that form creative activities and bring forth good positivity vibes, struggled to shove off negative thoughts that persist.
I know how lucky I am to be involved with the RADAR LEAP, just one faithful group of companions who have all had a challenging treatment journey. Everyone’s treatment journey is different, and reducing or discontinuing my meds was part of taking charge of my wellbeing and doing what I could to stay healthy.
I was advising on a study that would test out coming off medication, and I wanted to do the same myself because medication was causing me miseries for years, with uncontrollable adverse effects, so it did seem no medicine would be more likely to provide a better outcome.
Unfortunately, I had intellectually processed the idea of a clinical recovery, getting completely better with no more positive or negative symptoms of Schizophrenia. This was wishful thinking. I wanted to be completely unmedicated, but I fell into a trap.
Although I thought it through carefully, and I was so keen to come off medication I had no doubts at all, the experience was more complicated than expected. Cognitive symptoms of Schizophrenia were ever-present and I confused them with the side effects of antipsychotic medication. I became unwell but I am now reaching a meaningful, personal achievement of being in recovery with medication that prevents frequent, psychotic thinking.
Now I can be aware of my default mental state, yet fundamental to my make-up is believing in something beyond reason. The boundary between sanity and madness is a form of being utterly in fear and panic. It is filled with robust inaccurate assumptions, beset with hallucinations and delusions and compels my illness to act between my two consciences.
Yet I can’t make up my mind simultaneously and also gain insights into my default brain, as the mind loses the natural assumptions and experiences of a world associated with clinical psychosis.
I hope RADAR’s findings will give clinicians and service users a better perspective on deciding the best approach to moderate their medication. I had been having a brutal, lifelong fight with Schizophrenia and that fight was even more brutal alone.
That is where the RADAR LEAP helped, by connecting me with people who genuinely get it. I feel a deep sense of gratitude to the LEAP for focusing on my capabilities instead of what they see and for providing fair equality in the meetings. As a result, they could look at me as a person with abilities instead of viewing me as someone with a dreadful lifelong illness. Therefore life has blessed me with wonderful people I’m proud to call my friends.
Take-aways
Katherine: That was Davino reading Karl’s words. He shared his journey to accept medication and why finding people who get you is key.
All three of our guests offer their own unique perspectives into the same topic, but what seems to be the common factor is the idea of people having the information and support a say in their own lives. We’ll hear more about this in part two.
in the meantime, here are five key takeaways from this episode on the process of reducing or discontinuing antipsychotic medication.
- It’s helpful to find a psychiatrist or doctor who’s supportive and you feel you can be honest with.
- Peer support can also be a massive help, and there are lots of communities online or in person.
- As tempting as it is, if you do decide to reduce your medication, it’s important not to rush the process.
- Clinicians, try and listen to patient preferences and involve them in their treatment journey.
- And don’t be afraid to explore alternative approaches to treatment, which may or may not involve medication in some form. There isn’t a one size fits all approach. So research, ask questions and keep an open mind.
Conclusion
Personal choice and empowerment when it comes to your mental health is so important. We understand that medication can work for some and not for others. We know how important it is for those living with mental health issues to be fully informed.
Hear more stories in episode two, where we speak to two more RADAR LEAP members, including a family member of someone on antipsychotics, and the researcher responsible for helping participants reduce their medication.
We hope you found this episode helpful and informative. As mentioned at the start, please remember we’re not able to offer advice on individual treatment and would always advise speaking to your GP or psychiatrist if you have questions or concerns.
You can find out more about us or the study at www.mcpin.org or ucl.ac.uk, yhen head to the psychiatry tab and then the research section.
We’re also both on Twitter, @McPinFoundation and @RadarProgramme. And if you’d like to hear more McPin podcasts, you can follow us on Spotify, SoundCloud, or wherever you like to listen.
RADAR episode 2 – transcript
Introduction
Katherine: Welcome to the second instalment of our two episodes on antipsychotic medication choices.
In part one, we heard that antipsychotics are the recommended treatment for schizophrenia and other similar conditions like psychosis. This means it’s vital that wherever possible people have information about and input into their treatment journey.
We shared insights and experiences from people involved in the RADAR study to illustrate this. ‘RADAR’ stands for ‘Research into Antipsychotic Discontinuation and Reduction’, and it ended in early 2022.
The study looked at the impact of helping people reduce or stop their antipsychotics in a slow supported way by splitting participants into two groups. One received treatment as usual, the other worked with the team to create a tailored plan to reduce their meds.
We spoke to Johnny and Karl, two members from the RADAR’s Lived Experience Advisory Panel (or LEAP), which was made up of eight people with expertise in antipsychotic medication, either through personal use or as a supporter of someone with psychosis. The LEAP met regularly to discuss the study’s progress and offer vital feedback on topics like recruitment and findings. We also heard from the study lead Professor Joanna Moncrieff.
In this episode, we’ll speak to another member of the RADAR research team and two more LEAP members, one with the experience of taking antipsychotic medication themselves, and one who supports a family member who does.
Before we hear from our first guest, just a quick reminder that first, antipsychotic medication can be useful – we’re not trying to discourage people from using it. We just want to support people to make informed decisions about their treatment.
Second, while we hope the information and advice on this podcast will be useful for both clinicians and people on medication, we can’t offer guidance to people about their own medication or how best to reduce antipsychotic medication. If you have questions about this, please speak to your GP or psychiatrist.
Interview 1 – Sandra Jayacodi, LEAP member
Our first guest is Lived Experience Advisory Panel member Sandra Jayacodi. She discusses her journey of taking medication, what she wishes she’d been told when she was first prescribed, and the importance of open, honest conversations.
SJ: When I was prescribed I thought it was just any other medication, you know, like medication you take for physical health. So you just take it, because doctors are prescribed for you.
It was not until after taking the medication I found out that there’s a lot of side effects to the medication, which I didn’t know at the beginning when they prescribed the medication. And it was by chance when I was involved in an improvement project that I found that for people with severe mental illness, life expectancy can be reduced by anything between 15 to 20 years or even 30 years.
And the cause of it is not the medication, but the side effects of the medication that leads to the lifestyle that you lead. So for me was like, you know, not able to wake up in the morning, I’ll be sleeping till 10, 11 o’clock, sometimes even till midday. And then I was putting on weight a lot.
And then when I came into the RADAR study, that’s when I really knew about the full effect of antipsychotic medication. And I got involved in it because I was actually wanting to stop the medication, but I didn’t know how to do it.
And I didn’t know whether there is a possibility, because I’ve never had any discussion with my service providers about reducing or stopping or reviewing. I don’t think I was informed whether I have to be on this medication for life when I was prescribed.
When I came into the RADAR study, it was only then I knew there is something called medicine review. I felt cheated because didn’t know that I had the right. So after being in that study I had a conversation with my psychiatrist saying that I wanted to reduce my medication and he did reduce it by like a hundred milligram.
But then when I had kind of an episode about three to six months later he decided that I have to go back to the full medication and that was it. And no other conversation after that, about the medication.
So when I got into RADAR study, I decided, when I knew so much about the study and how they were helping people to taper it down, I thought maybe I should do it by myself. But when I stopped it, I knew there were withdrawal symptoms because in the study I was beginning to understand about the difference between withdrawal symptoms and relapse. So I clearly had lots of withdrawal symptoms and the worst one was not sleeping. It was so torturous.
But the other thing I felt in the beginning was I had nausea – it was similar to somebody who’s been on drugs for a long time and having these withdrawal symptoms. So when I couldn’t sleep, I decided to tell my psychiatrist and I took sleeping tablets for a while but then I found I was getting hooked onto the sleeping tablets. So without the sleeping tablets, I couldn’t sleep. And then what was happening was I was beginning to feel very agitated. This was almost five to six months into stopping the medication. I didn’t know it was a relapse, but I was feeling unwell quite a bit.
And because it was a different psychiatrist and I found her very pleasant and helpful, so I said, I have to tell you the truth, I can’t hide it any longer, I’ve not been taking my medication. And then she kind of paused and she didn’t immediately jump at me or anything, she said, okay, let’s see what I can do to help you.
So that kind of gave me back my confidence, so she put me back on a lower dose of my antipsychotic drugs. And then she said that what we will do is we will monitor you. We will give you the sleeping tablet as well, in case you need to take it, and we will taper it down slowly. So that confidence really has helped me now.
I have been talking about bringing the awareness of the side effects of the antipsychotic drugs or any medication at the point of being prescribed.
And one of the things that I hear from the psychiatrists, or people who are treating people with severe mental illness is, ‘oh, they might not be ready to hear this’, you know. I can understand that as well, because if I had a crisis and I’m being admitted and I’m not in the state of mind to actually hear what my psychiatrist is going to say, that you are going to put on weight and you are going to sleep till 12 o’clock and you might feel like a zombie, you might never get back into work – I don’t think I’m ready to take that if I’m just admitted.
But you have to find the midpoint, the right time, when the person is calm, and you are about to discharge the person because you know the person can take care of themselves when back in the community. You’re able to discharge them, so you should be able to tell them side effects of the drugs and also what support is available out there.
It’s so important about having healthy meals and proper exercise. Those are the key two factors, especially if you’re giving people antipsychotic drugs that’s gonna make them put on weight. So why are you not talking about it?
And also what’s important is they must be told whether you need to take this medication over many years, or maybe six months or maybe a year down the line we will review it and see if we can reduce it.
And what I have done now is I’ve taken what I have learned from the RADAR study and gone back to the Trust where I receive my treatment and I’ve spoken to them a lot in every meeting that I’m there about medication review, discontinuation, reduction and the wastage of medicine – because many, many, many people with severe mental illness do not take the medication, because of the side effects of that.
So now the Trust is listening to what we are saying and then they have set up a task force to look into those deprescribing so, yes, it’s given me the confidence to talk about it openly, share about it, discuss with other service users and carers, telling them you should go and speak to your psychiatrist.
I’m not telling you have to stop just because I’m trying to stop, but what’s important is have a conversation. Just chat. Remove the fact that you are a clinician or whatever, but have a chat, an open heart, and discuss about what this medication is, why we are prescribing this, how long you would have to take this, what are the side effects of these drugs, when you will review it, when we can come off it or reduce it, what’s the method of reducing it and the relapse or the withdrawal symptoms – you know, have this conversation, just chat about it.
If the person is not ready to receive this conversation, call that person back in a month’s time and then have that conversation. Let the service users feel that they are responsible for their medication as well. That is so important.
Interview 2 – Dr Mark Horowitz
Katherine: That was Sandra with advice on how to get the timing right on tough conversations and how her lived experience helped drive change in her local Trust. Next up is Dr. Mark Horowitz, who’s been a clinical research fellow on RADAR for the last three years.
Mark worked with some of the patients reducing their medication on the RADAR study. He met with them every couple of months to see how they were getting on and decide with them whether they wanted to reduce their medication further and eventually come off it completely. Some also continued to see their previous psychiatrists during this study.
Here, he talked about his reasons for wanting to get involved, why antipsychotics might be misleadingly named and some alternatives to medication.
MH: A lot of the studies that purport to show that medications prevent relapse are actually very problematic because in most of those studies medication is stopped quickly and withdrawal effects from the medications, which we know occur for all psychiatric drugs, are not taken into account.
And that made it, in my mind, an urgent imperative to work out, are people who are diagnosed with Schizophrenia better staying on their medication, or is it better for them to come off their treatment? And I thought that it would be very difficult for me to return to clinical practice without knowing the answer to that question.
I think the other aspect of this that made it so important to me to participate in was, as a psychiatrist, you spend a lot of time convincing people to take medication that they don’t want to take.
So maybe the most common conversation I would have with patients is, even though this medication makes you feel bad in lots of ways, I would routinely explain to them, no, I’m sorry that the medication doesn’t make you feel good, we can work out ways to make it better by changing dose or changing medication, but ultimately you need to be on this medication because it’s keeping you well. And so knowing the statement that I was making to patients again and again may not be true, again, is what compelled me take part in this trial.
The underpinning of this trial is that those studies that stopped medication, generally stop medication on average over four weeks, even in people who are on long-term medication, and like lots of aspects of psychiatry the withdrawal effects from drugs have been minimized, or really in the case of antipsychotics, completely ignored.
And what we now understand in general, was any drug that you take repeatedly over long periods, will cause changes to the brain and when you stop that drug, there’ll be withdrawal effects, which is essentially the brain missing that level of medication. And everyone knows that for nicotine, caffeine, but it’s also the case for all different types of psychiatric drugs – they’re all psychoactive substances and they all cause withdrawal effects.
What is particularly interesting for antipsychotics is it’s different lines of evidence that withdrawal effects from antipsychotics can look a lot like relapse. So it can include psychotic symptoms, it can include trouble sleeping, it can include anxiety – all of which would be measured as relapse in the kind of measurement scales that researchers use, making the people who stopped their drugs look like they relapse a lot when really the possibility exists that if they’d stopped the drugs more carefully or more slowly, that they wouldn’t have had those withdrawal effects, and therefore they wouldn’t have had as many relapses as were detected.
This trial has been done similarly once before in Holland and showed that people who reduced or stop their medications slowly, if you follow them up for years, actually were twice as likely to be recovered as patients who stayed on the drugs without reducing. And that study importantly looked at people’s lives rather than just their symptoms, which we know is more important to patients. And so it’s quite a startling finding.
It’s not to say that medication doesn’t have some role. It seems to be useful to calm people down short term, potentially, especially when they’re an extreme states, but what we’re really addressing is, should people be on this medication for years or decades or, as is often the case, their entire lives? And to change that would put a lot of people’s noses out of joint.
Antipsychotics is really a name given by drug companies to make the medication sound targeted. To target a medication that would only deal with delusional thoughts or hearing voices is beyond the powers of current science. In fact before antipsychotics were called antipsychotics they were called major tranquilizers, and antipsychotics actually came out of drugs that we used as anaesthetics in surgery.
So that makes sense of why a drug might be useful in the short-term or when used sporadically, but why it might impair you in the long-term. In other words, it’s numbing you or it’s reducing activity in your brain in some way. So if you’re trying to do things like participate in relationships, work, if you are sedated or tranquilized, to the point where it’s harder to think or feel, it might impair your ability to function.
So, one, that very much matches to what people say – you know, ‘my patients were complaining to me, I feel zombified on this drug, I feel sedated’. And although once I was able to dismiss that as an unwanted side effect of an effective treatment, what I’ve realized much more is as much likely to be the effect of the treatment.
And I would still entertain the thought that some people may benefit from being slightly tranquilized if that’s what they want, if they find that helpful. But what we’re dealing with really is mandatory treatment of patients. We’re telling them you must be on this medication because it prevents relapse.
So it’s not really informed consent, and that’s what I think this trial was good at. There’s a lot of discussion with patients, ‘What would you like to do? Would you like to be on a lower dose to stay where you are?’, in a way that doesn’t normally happen as much as it should in clinical practice.
There are other approaches that are also being researched at the moment. So one approach is something called Open Dialogue, which is essentially an amalgam of family therapy mixed with some different elements. And it essentially tries to look at the problem of people having psychotic experiences as something that exists in networks between people, and that dealing with family dynamics and the way people think about each other and the way they support each other can help people navigate those difficulties.
And different studies have shown that people who are treated that way use much less medication, they use it for shorter periods of time, and they’re much more likely to end up employed and back in their previous social relationships.
So my piece of advice to people who are on antipsychotics is to be as informed possible about the medications and their condition. And when it comes to medications to know about their benefits, their harms and to know about alternatives for treatment.
For clinicians, I would invite them to be open-minded about the effects of medication in the long-term, to appreciate how the evidence-base for long-term treatment is constructed – some of the methodological limitations of that evidence-base; to try to centre patients’ wishes much as possible, taking very much to heart what people say about the role of medications in their lives and being open, I guess, to what might be considered advances in the field, at different ways of managing psychotic conditions that don’t involve medications.
Interview 3 – Ruth, LEAP member
Katherine: That was Mark talking about the importance of coming off medication slowly, withdrawal effects, and Open Dialogue as an alternative treatment.
Another advocate for Open Dialogue is our next and final guest, Ruth. She’s a family member and supporter to her adult daughter who’s been prescribed antipsychotic medication over the past 17 years.
Ruth’s involvement in the RADAR study was both as a member of the LEAP and as a co-applicant, which means she was part of the research team and her name and role was included on the application for funding for the research. As a co-applicant Ruth was part of the management group meetings and also attended some steering committee meetings.
Here she discusses the impact medication has had on both her daughter and herself, their struggle to find a better alternative to the current system and the importance of looking after yourself as a supporter caught up in the psychiatric system.
Ruth: I can’t say I received an awful lot of support at all. And at the very beginning, I received nothing, except when I went out and found it for myself. Certainly the mental health services did not offer me any support whatsoever, and in fact, whilst my daughter was going through what we commonly call ‘treatment as usual’ with the mental health services, I would say that I was excluded from most of the decisions that were made
I certainly had to invite myself in and make sure that I was there because when my daughter was not in hospital, when she was at home with me or staying somewhere else, she was relying heavily on me to support her and also to clarify things for her, because the medications caused all kinds of side effects, such as huge confusion about what was happening.
And then I began to find other family members and carers who seemed to be having similar experiences to what I had had and what my daughter had had. And from there I learned about so many other critical explanations, if you like, about prescribed medications for mental health problems that I began to really pull back the shutters that were over my eyes for so long, because I was a person who’d actually trusted the mental health services, as so many people do.
So anyway, I delved into that a bit and I found out that there was a team in North East London called Dialogue First who were taking referrals from people like my daughter who didn’t necessarily in the area, and we have been seeing a team who work in an open dialogical way for the past five to six years and it has been amazing. And as I’ve said to them, if we had had your service way back 17 years ago, when my daughter had this crisis, our lives would be entirely different.
It may not work for everybody, but there are other alternatives that could be brought in. So I’m just hoping that we will see change happening because I’m so sad. I get quite depressed thinking about what’s happening to people who are given these medications.
Practitioners they need to ask people ‘what has happened to you?’, not ‘what is wrong with you?’. You need to listen to people telling their story about what’s happened, you know, ‘Why are you feeling so distressed? Why are you feeling so sad? What’s going on for you?’.
So I believe that practitioners who work in the mental health services, including psychiatrists, they need to listen to service users and their supporters, like me. They need to try and get a more rounded view of the person that they’re helping before they start prescribing medications to them.
And if you do prescribe medications, give a full explanation of all the adverse side effects and why you believe they will be helpful and also for how long they will be needed. And promise to provide support when it is time to come off of these medications.
Try and find out if you can get some help for yourself. Because after a lot of asking, two years into this whole thing, I managed to get a psychologist to work with my daughter and I – my daughter was on heavy medication at the time so it did help her a bit, but it really helped me. It really, really helped me to be listened to, to be validated, to be told basically, you’re doing a very tough job here, Ruth, and given some insights into the way to work with my daughter
I just think you’ve got to look after yourself as a carer, because there are times when the person in your family who’s so-called ‘unwell’, who’s going through a hard, hard time, can be really challenging to us, to the closest people to them. And it’s really tough to take that on board and realize that this is their distress, but is bearable if you only understand that it is just something they have to get through themselves.
Join, if you can find them, carers groups online even, particularly ones that have some critical people like myself on board. And I’m also a member of the Open Dialogue Champions, which is a group of us family member carers who are trying to promote Open Dialogue across the different Trusts in the UK. So, a carer could always come and join us Open Dialogue Champions.
Take-aways
Katherine: That was Ruth talking about how to get support as a carer, the need for a more holistic approach in services, and how Open Dialogue changed her and her daughter’s life.
The Radar study has now ended and two papers have been released, one outlining the results and another sharing a lived experience perspective. You can find them at www.mcpin.org, and we will also link to them in this podcast’s show notes.
There are also plans for a longer term follow up to the study as the team believes that the short term results may still be influenced by withdrawal problems. This will help them get a better view of the longer term impacts of reducing medication.
In the meantime, here are five key takeaways from this episode on the importance of education and choice around antipsychotic medication.
- Withdrawal and relapse can look similar but aren’t necessarily the same.
- By reducing medications slowly, you can often see the withdrawal effects more clearly and tackle them one by one.
- Timing is crucial for patients. This may be deciding when you’re in the best place to come off medication if you want to. And for clinicians, this may be deciding when to have conversations with patients about things like side effects
- If you’re caring for someone on antipsychotics, it’s really important to look after yourself and find support where you can.
- For people on all sides of the experience, keep an open mind and keep communicating with each other. As we said previously, education and choice are key, in any area of mental health.
Conclusion
Thank you so much to everyone involved in the podcast, including the Radar study team, the members of the LEAP who’ve generously shared their experiences and advice, as well as the LEAP members who supported others in this process.
We hope you found this episode helpful and informative. As mentioned at the start, please remember we’re not able to offer advice on individual treatment and would always advise speaking to your GP or psychiatrist if you have questions or concerns.
You can find out more about us or the study at www.mcPin.org or ucl.ac.uk, then head to the psychiatry tab and then the research section. We’re also both on Twitter, @McPinFoundation and @radarprogramme.
And if you’d like to hear more McPin podcasts, you can follow us on Spotify, SoundCloud, or wherever you like to listen.
