“I found hundreds of other people…but I still wasn’t believed” – An exploratory study on lived experiences of antipsychotic withdrawal

ABSTRACT

Background

Antipsychotic withdrawal refers to a diverse range of symptoms and experiences, which can occur secondary to the cessation or reduction in dose of an antipsychotic drug. This study addresses the shortage of qualitative research that investigates users’ hopes, expectations, and feelings throughout the process, as well as limited research on people prescribed antipsychotics for off-license indications.

Methods

Nine people recruited from online user-led groups and forums relevant to antipsychotic withdrawal took part in semi-structured interviews via online video. Four of the participants were prescribed antipsychotics for off-licence indications. Reflexive thematic analysis was used to identify themes.

Results

The themes were: balancing priorities, withdrawal journey, invalidation of experiences and peer community. Findings show the extent of symptoms that can be experienced secondary to antipsychotic discontinuation, they highlight the wider individual context that antipsychotics impact, and the meaningful reasoning behind withdrawal decisions.

Discussion

This study highlights the importance of developing clinical guidelines for antipsychotic withdrawal to facilitate service-user choice and minimize harms when making decisions about discontinuation. These findings endorse a shift towards full disclosure on the risk of antipsychotic withdrawal effects at the point of starting antipsychotics thus allowing service-users to make informed choices.

KEYWORDS:

• Antipsychotic withdrawal
• discontinuation
• patient experience
• deprescribing
• qualitative research

Introduction

Antipsychotic drugs, also called neuroleptics or major tranquilizers, are usually prescribed for people diagnosed with schizophrenia-spectrum disorders, bipolar disorders and off-label indications including depression, anxiety, obsessive-compulsive disorder, and dementia or learning disability associated agitation (NICE, 2014). Between 2007 and 2011 in primary care in the United Kingdom (UK) over 47,000 people were prescribed an antipsychotic, with a steady increase in prescription rates since (Heald et al., 2020; Marston et al., 2014). Switching or stopping antipsychotics is common practice when experiencing either little-to-no beneficial response (Leucht et al., 2017; Samara et al., 2018) or intolerable side effects (Hynes et al., 2020). In one study, 74% of people prescribed an antipsychotic for schizophrenia attempted withdrawal at least once within 18 months of treatment initiation. Side effects and lack of efficacy were given as the most common reasons for discontinuation (Lieberman et al., 2005). Coming off an antipsychotic presents the risk of withdrawal symptoms, and the return of symptoms the drug was targeting (Guy et al., 2019).

Drug withdrawal syndromes are defined as a group of symptoms which can be physical, psychological, or cognitive, occurring in response to changes in the pharmacological effects of a drug upon the discontinuation, dose reduction, or switching of a drug (Chouinard et al., 2017; Reidenberg, 2011). Currently, there is a lack of acknowledgement in clinical guidelines on the extent that antipsychotics can induce these effects (Cooper et al., 2020). Reported antipsychotic withdrawal effects include insomnia, gastrointestinal disturbances, sweating, tremors, dyskinesia, and anxiety (Brandt et al., 2020; Larsen-Barr & Seymour, 2021). No consensus exists over whether withdrawal effects are iatrogenic (Chouinard et al., 2017; Moncrieff, 2006), or whether the experiences are a relapse of a prior diagnosis (Emsley et al., 2018). Irrespective, it is essential for all practitioners to promote harm reduction (Hall et al., 2007) and be aware of the continual struggle with the emotional and physical effects resulting from antipsychotic use and withdrawal (Cosci & Chouinard, 2020). Thus, being mindful to how debilitating antipsychotic withdrawal can be (Guy et al., 2019).

Assessing the effects of antipsychotic maintenance versus discontinuation on long-term outcomes should provide evidence to support informed choices for people considering their medication options. Randomised controlled trials (RCT) focus on withdrawal outcomes, rarely assessing quality of life improvements (Wunderink, 2019). Emerging evidence on long-term outcomes post discontinuation is beginning to challenge the status quo of maintenance treatment (Cooper et al., 2021; Moncrieff, 2015). In an observational study with a 19-year follow-up, those with a lower cumulative exposure to antipsychotics 5 years after their first episode of psychosis had lower rates of suicide and premature mortality (Bergström et al., 2020).

Little is published about how people manage their discontinuation attempts, or whether psycho-social factors such as social integration or emotional support affect the ability to achieve reduction goals. Hyperbolic reductions, with increasingly smaller sequential increments of 25–50% previous dose, are advocated (Horowitz et al., 2021). In practice, the limiting factor is the lack of availability in drug dosage forms and strengths. UK guidance on schizophrenia and psychosis (NICE) provides detailed steps on antipsychotic initiation, but remains inadequate in deprescribing. This absence is a likely contributor to clinicians’ reluctance to support withdrawal attempts (Cooper et al., 2019; Forsberg et al., 2018; Gupta et al., 2018). Some national guidelines mention withdrawal, such as the German National Guideline on stipulating small-dose reductions every 6–12 weeks (Gaebel et al., 2020),, others do not (Gupta et al., 2018).

Gathering the diversity of experiences of people, who have been through antipsychotic withdrawal, facilitates a better understanding of the potential difficulties. A qualitative study reported frequent experiences of insomnia and anxiety secondary to discontinuation, and symptoms of psychosis and mania (Larsen-Barr & Seymour, 2021). Moreover, 65% of participants in an online survey (n = 650) experienced withdrawal effects (Read & Sacia, 2020). This concurred with a previous survey (n = 105) where 62% of the sample described withdrawal symptoms spanning physical, emotional, cognitive, and functional domains (Larsen-Barr et al., 2018). Given the growing evidence for the presence of withdrawal symptoms secondary to antipsychotic discontinuation, this study aims to explore experiences of antipsychotic withdrawal following complete cessation or dose reduction.

Methods

This study explores the realities of antipsychotic withdrawal after complete withdrawal or dose reduction. It draws on a critical realist ontology, which is well suited to experiential research (Braun & Clarke, 2006). This approach recognizes that the knowledge produced from the data is situated and contextual, researcher’s subjectivity is conceptualised as a resource, rather than being detrimental to credibility (Braun & Clarke, 2020).

Design

Qualitative methods were used due to the exploratory nature of the study. The study topic and design were influenced by the second author’s experiences of antipsychotic withdrawal both personally and in a peer support capacity. Semi-structured interviews enabled the collection of rich, detailed narratives of individual experiences. The interview guide was based on existing literature and feedback from the second author (available on request). It focused on participant’s mental health, medication history, withdrawal strategy, symptoms, and outcomes. Support systems during withdrawal and participants’ reflections on the experience were also explored.

The first author conducted the interviews via online video call or over telephone due to the COVID-19 restrictions. This enabled wider recruitment that enriched the dataset. Being able to turn the camera off created a safe atmosphere encouraging openness and vulnerability. Data collection period was time-limited due to the submission date for the dissertation, but data saturation was reached by the final interview. To assess saturation, all the transcripts were checked to assess if new ideas were presented in the latter interviews.

Thematic analysis was used to interpret patterns across the dataset (Braun & Clarke, 2006). This methodology embraces qualitative research values and the researchers’ subjective skills (Braun & Clarke, 2020). In coding both inductive (data driven) and deductive (existing knowledge informed) approaches were used, allowing exploration of initial areas of interest, and participants’ individual experiences. Themes were not conceptualized prior to data collection but were interpreted from the dataset.

The research was carried out by the first author as part of her master’s degree. The second and third authors were the project supervisors. The study was reviewed by the Newcastle University Faculty of Medical Sciences Research Ethics Committee [2018/5102/2020].

Recruitment

Participants had to be 18 years or over; had been prescribed and had taken an antipsychotic drug(s) for any indication; had experienced coming off an antipsychotic drug either completely or partially; understand and speak English; have access to email and technology necessary to receive an online video or telephone call. There were no geographical restrictions on participation.

The study used a purposeful sampling via user-led websites: “Let’s Talk Withdrawal Podcast” Facebook group (Moore, 2020), and a schizophrenia medication forum (Chiko, 2020). Users were invited to express their interest in participation by completing an online form. Those eligible were emailed the participant information sheet prior to completing the consent form. Participants were then emailed to arrange the interview. Data collection took place in November and December 2020.

Procedure

Participants who completed the consent form were contacted to arrange the date and time for an interview. Based on participants’ preference, the interviews were conducted either via online video or telephone call. The mean duration of interviews was 53 min (range 32–94 minutes). Interviews were audio recorded with consent. After the interview, participants were sent a de-briefing letter signposting appropriate sources of advice and support. Once the analysis was complete, the participants were sent a poster summary of the findings. This summary was also shared on the platforms used for recruitment.

The sample

Eighteen eligible participants were contacted, of those, ten provided consent and nine completed the study. Five participants were female, three males and one non-binary. Table 1 presents participant demographics, Table 2 is an overview of participants’ withdrawal experiences and outcomes.

Table 1. Participant demographics.

Gender	Age range (years)	Occupational status	Country of residence
Female = 5	18-29 = 1	Self-employed = 2	United States = 4
Male = 3	30-39 = 2	Unemployed = 2	United Kingdom = 2
Non-binary = 1	40-49 = 3	Unable to work = 3	Australia = 1
	50-59 = 1	Student = 1	New Zealand = 1
	60-69 = 1	Retired = 1	Romania = 1
	70-79 = 2

Table 2. Summary of antipsychotic withdrawal experience(s).

Participant Pseudonym	Antipsychotic(s)^1 withdrawn or reduced	Reason^2 for Prescription	Length of Time on Antipsychotic	No. of Withdrawal Attempts	Starting TDD^3	Withdrawal Strategy	Withdrawal Attempt Outcome
Diana	Ziprasidone	Psychosis	7 years	2	40 mg 80 mg	Came off immediately Tapered over 2–3 months	Increased dose (160 mg) Resumed original dose
Ben	Amisulpride	Schizophrenia	2 years	1	800 mg	Reduced dose in <1 month	Resumed original dose
Olivia	Quetiapine Olanzapine	Bipolar	>1 year >1 year	(1) 1 (2) 1	25 mg 15 mg	Came off immediately Tapered over 1–2 months	Prescribed Olanzapine Reduced dose (2.5 mg)
Christine	Quetiapine	Bipolar	5 months	1	450 mg	Tapered over 1–2 years	No longer taking (10 months)
Matthew	Olanzapine	Schizophrenia	>20 years	2	1.25 mg	Halved dose Came off immediately	Resumed original dose Resumed original dose
Harriet	Quetiapine	PTSD^4	10 years	3	200 mg	Came off immediately Halved dose Tapered over 4 years	Resumed original dose Resumed original dose Reduced dose (8 mg)
Grace	Quetiapine	Anxiety and Insomnia	2 months	1	100 mg	Tapered over several months	No longer taking (>1 year)
Colin	Haloperidol	Schizophrenia	40 years	2	1 mg	Came off immediately Tapered over 6 months	Resumed original dose No longer taking
Paula	Quetiapine	PTSD	1–2 months	1	12.5 mg	Came off immediately	No longer taking (>2 years)

¹Limited to those covered completely in interview, ²Diagnoses relevant to antipsychotic use, ³Total daily dose, ⁴Post-traumatic stress disorder.

Analysis

Automatic transcripts from zoom were screened alongside recordings to edit all errors and aid data familiarization. References to people, places and services were removed for anonymity, and pseudonyms were assigned. At the start of the analysis, a detailed account of each participant’s experiences was created (available on request). NVivo software was used for the analysis. Coding was undertaken by the first author. Each code captured analytic observations of one idea or meaning, ranging from explicit, surface level ideas (semantic meaning) to underlying assumptions and patterns (latent meaning). Related codes merged into themes, each representing an abstract concept related to the collated lived experiences of antipsychotic withdrawal.

The first author was aware of their own preconceptions as a pharmacy student and lack of personal lived experience with the research topic. To enhance the analytic validity, the developing themes were regularly discussed with the supervisors. Having a supervisor with lived experience helped identify issues such as data misinterpretation or language misuse.

Results

The themes identified were: balancing priorities, withdrawal journey, invalidation of experiences and peer community.

Theme 1: balancing priorities

Balancing priorities captured the participants’ reality of living with antipsychotics including reasons for use, adverse effects, challenges and fears. Participants were pursuing balance between antipsychotic benefits and adverse effects, ranging from acute symptoms to long-term complications.

Antipsychotic indications the participants disclosed included diagnoses of schizophrenia-spectrum disorders, bipolar disorder, PTSD, anxiety and insomnia. Common benefits included helping sleep and mood.

“I needed to slow down, to sleep, some mood benefit and something to control that impulse, and apparently that [antipsychotics] fits the bill”. – Christine

Three participants could attribute no benefits to antipsychotic use. Two felt that antipsychotics were to benefit others, as opposed to themselves:

“I don’t feel like I’m taking [amisulpride] for my own good, it just makes me more compliant to society”. – Ben

All participants reported unwanted symptoms or complications associated with antipsychotics. These included excess sedation (7/9), weight gain (5/9), and akathisia (4/9). Agitation and impact on sex drive were both mentioned by two participants. The antipsychotics affected the participants’ daily functioning physiologically and psychologically.

“I was basically a zombie; I was doing nothing but sleeping”. – Diana

Whilst on antipsychotics participants felt like they were not in control of their wellbeing. Two participants explicitly talked about their desire to “feel like me again”. For some participants, adverse effects were the sole reason behind their decision to withdraw:

“I got postural hypotension the last time I was on [quetiapine], so I’d get out of bed and collapse, and I’d wake up lying on the floor”. – Grace

All participants described the difficulties with work and employment whilst experiencing antipsychotic sedation due to lack of concentration, memory and recall.

“To find a job you need to do the tasks well, and if you cannot concentrate, pay attention, or memorize things, they simply drop you”. – Olivia

Participants shared their reluctance to disclose to others their use of antipsychotics. Three participants specifically spoke about stigma and shame limiting what they share and with whom they shared it.

“What really struck me is that it was an anti ‘psychotic’, because I’m going to get stigmatized”. – Paula

Theme 2: withdrawal journey

Wanting to discontinue was a personal decision and experiences of withdrawal effects were subjective. When participants shared their withdrawal experiences strategy, symptoms and impact on physical and mental health were discussed. Receiving support formally or informally was an important part of the withdrawal journey for the participants.

Eight of the participants had tried tapering (see Table 2). One strategy was to taper doses down slowly over extended periods of time. The longest reported taper in this study was four years, whilst the shortest was two months. Four participants felt their taper had been too fast. The strategies were often reflexive:

“It took me a year and two months to get off quetiapine. We were figuring out that it wasn’t the milligram count of the cut that made the difference, but rather the percentage”. – Christine

Participants also tried coming off abruptly, known as “going cold turkey’. Five participants reported using this strategy at least once, two did so on advice. The responses ranged from feeling the best they had felt for a long time to a quick readmission. Of the participants, Paula was the only one who was not started on antipsychotics again after this withdrawal attempt.

All participants who came off or reduced an antipsychotic after being on a regular daily dose for over two months, described experiencing withdrawal symptoms. Common symptoms included insomnia (5/9), anxiety (6/9), agitation (5/9) and nausea (4/9). Several participants also described indistinct symptoms:

“ … the brains zapps […] they are horrible. It feels like you’re being electrocuted. Every time you blink”. – Diana

Describing withdrawal effects to healthcare providers was challenging and it was common to that only peers appreciated how challenging symptoms could be from peers.

“I found hundreds of other people that were saying exactly the same that I was, having exactly the same withdrawal symptoms as I was, and even when I printed that out and took it with me I wasn’t believed” – Harriet

There were examples of positive withdrawal effects, such as a reduction in adverse effects and reduced anxiety about physical health risks. Two of the participants described that they “felt like me again”. However, most found the physical effects experienced, secondary to coming off antipsychotics, were debilitating:

“Since withdrawal, I was diagnosed with fibromyalgia. Some days it’s hard to walk, function, sit up, and even breathing hurts”. – Christine

The excruciating experience of withdrawal for some had extreme ramifications on mental health and two participants recalled feeling suicidal:

“I could just about stop myself from killing myself when I was coming off quetiapine. I am very lucky to have managed to get out of it without taking my life”. – Grace

Participants received informal support from family, peers or friends (6/9) or formal support from clinical professionals (4/9) during their withdrawal experience. Helpful support from clinicians included increasing contact time and allowing flexibility with withdrawal strategies that took into consideration each person’s individual their life experiences. There were accounts of positive relationships with prescribers.

“My doctor was very supportive, she increased our visits from every three months to monthly, and just checked on how I was doing”. – Diana

Sometimes relatives and service providers opposed decisions to discontinue, which affected how well participants coped with withdrawal:

“When the only people in your life are against what you’re doing it makes things very difficult. When your parents and doctors aren’t supporting you, you just end up losing it”. – Ben

Instances where relatives were unhappy with withdrawal outcomes usually put a strain on their relationship with the user:

“My mom really wanted me to come off, and when I went back on, she was really mad at me because I wasn’t giving her grandchildren. That was not helpful”. – Diana

Theme 3: invalidation of experiences

This theme focuses on the interactions with healthcare services. Participants shared a sense of invalidation of their experiences and reluctance to support discontinuation. Elements of this theme are distinguishing between withdrawal and relapse, risk aversity, non-disclosure and inconsistency.

The participants felt they were not believed or taken seriously. The severity and impact of the symptoms were overlooked. Four participants said professionals had classed their symptoms as relapses of prior diagnoses. This angered the participants especially when they had not previously experienced these symptoms. Two participants completely disengaged with healthcare services after their withdrawal symptoms had been disregarded:

“I’ve severed relationships with the medical system, and therefore put myself in a difficult category. I discontinued my contact, and I’ve improved ever since”. – Paula

Participants felt there was a gap in clinical training on discontinuation or tapering contributing to perceived lack of understanding and knowledge by the clinicians. They felt frustrated at the reluctance of services to support dose reductions in favour of short-term stability, choosing harm reduction over quality of life.

“The doctors put me on a huge dose when I’m in hospital, and then in the community they don’t change it because they don’t wanna rock the boat. It feels like it’s an insurance policy”. – Ben

Participants frequently reported not receiving full disclosure on adverse effects, health risks, or the potential for withdrawal effects at initiation of antipsychotics. This was thought to be due to clinicians’ fears of jeopardizing adherence:

“You don’t get the full story, over fear [you] won’t take it”. – Christine

Participants described receiving conflicting and unhelpful advice on antipsychotic withdrawal from services and commented on lack of training or consistent process:

“The doctors I came into contact with had little-to-no knowledge of the withdrawal process. I was very ill-advised; some doctors will say miss a dose, there’s no structure to the tapering schedules”. – Grace

Theme 4: peer community

This theme focuses on the role of peer support on the withdrawal journey. Groups and forums became a platform to seek help from others with similar experiences. Availability of online resources and sharing own experiences were seen as ways of improving others’ withdrawal outcomes.

The benefits of accessing online groups included receiving support, validation, advice, and forming social connections. Peer support was seen more valuable than medical advice on withdrawal:

“I’m more likely to take advice from someone who’s been in my shoes”. – Diana

Participants recognised the need to be vigilant when accessing online resources. The positive and negative sides of online platforms were acknowledged.

“The forums help with not feeling so alone, but what I read online, you know, it makes me scared, because Wikipedia says that Zyprexa causes dementia”. – Matthew

Participants wanted to share advice based on their experiences to benefit others considering withdrawal. This included self-education, seeking support from clinical staff and making decisions from a stable place. All participants apart from Paula encouraged others not to rush withdrawal. Participants who went back onto their antipsychotic felt that their taper had been too fast. A slow taper was seen to provide stability.

“If it’s too much, slow down. It’s okay, it’s not a race”. – Christine

Participants who experienced outcomes such as hospitalization tended to advise others to be wary about the risks associated with coming off antipsychotics:

“It can take a long time before it goes bad, and it can go very bad sometimes. There can be big consequences”. – Colin

Of the participants, four were no longer taking antipsychotics, two intended to maintain their use and three wanted to discontinue completely in the future. Thus, having had withdrawal attempts with undesired outcomes did not stop some of the participants from wanting to try again.

Discussion

This study explored lived experiences of antipsychotic withdrawal without exclusion criteria on location or prior diagnoses. Findings corroborate previous research (Larsen-Barr et al., 2018; Read & Sacia, 2020; Salomon et al., 2014), and raise questions about how well people who desire to discontinue antipsychotics are supported. Participants perceived antipsychotics to provide short-term symptomatic relief but saw them as less helpful in the long term, a perspective evident in other studies (Bjornestad et al., 2020; Read & Sacia, 2020).

Reporting antipsychotic discontinuation symptoms in the literature has potentially been hampered by lack of clarity on what is classed as relapse (Moncrieff et al., 2019) yet documented evidence on withdrawal syndromes exists (Chouinard & Chouinard, 2015). Participants in this study reported experiencing withdrawal symptoms such as agitation, anxiety, insomnia, and nausea, which is consistent with previous research (Larsen-Barr et al., 2018; Read & Sacia, 2020; Salomon et al., 2014). The associations between withdrawal strategy and severity of withdrawal effects reported by participants in this study are congruent with other literature. A survey in New Zealand reported that a higher proportion of individuals who tapered gradually discontinued completely (Larsen-Barr et al., 2018). A follow-on qualitative study suggested that alongside tapering, an individual’s psychosocial strength and available support impacted the outcomes (Larsen-Barr & Seymour, 2021). A naturalistic US study, which tapered over five years, showed that reductions could be achieved without increasing hospitalisations (Steingard, 2018). Similarly, participants in this study who described tapering over months or years were more likely to come off completely or achieve a reduction.

As with previous research, the findings showed a particular value of being connected with other people with shared experiences via online user-led groups (Geyt et al., 2016). A common reason for accessing peer support is subsequent to failed doctor or psychiatrist supported tapers (White et al., 2021). The current study, among others (Cooper et al., 2021; Larsen-Barr & Seymour, 2021), highlights that the desire to discontinue antipsychotics is not limited to those experiencing severe adverse effects – people who find the drugs primarily beneficial also attempt withdrawal.

Findings of this and other studies suggest that services are often failing to fully inform patients about the adverse effects or expected benefits of antipsychotics prior to initiation (Harris et al., 2017; Read & Sacia, 2020). An underlying fear of user non-compliance limits the amount of detail divulged by healthcare professionals about potential adverse effects (Martínez-Hernáez et al., 2020). Findings also highlighted inconsistent advice from providers about withdrawal strategies, potentially due to there currently globally being little-to-no national clinical guidance on reducing antipsychotics (Cooper et al., 2019). NICE guidance stipulates only that antipsychotics should be withdrawn gradually, leaving the definition of gradual to interpretation (NICE). Furthermore, a clinical guideline currently in development on drugs associated with dependence and withdrawal has failed to consider antipsychotics (Cooper et al., 2020).

Evidence-based medicine encourages practitioners to make decisions about treatment in alignment with research (Murad et al., 2016). Qualitative research is sometimes overlooked. However, it should be noted that anecdotal reports of antidepressant withdrawal effects are eventually becoming internationally recognized, and the recent calls for antipsychotics to be included in NICE guidelines on medications associated with dependence suggest that the same evolution may be underway in the UK (Anderson & Herxheimer, 2013; Iacobucci, 2019; Timms, 2020). In the current study complaints of difficulties withdrawing from antipsychotics had been re-conceptualized as the re-emergence of mental illness, which can be argued to be representative of hermeneutical injustice stemming from deficient collective understanding of social experiences of another (Harper, 2020). Overall, users’ personal experiences are all too often overlooked due to the perception that subjectivity results in unreliability (Greenhalgh et al., 2015).

Participants in this study felt that services were risk averse where discontinuation was concerned, which aligns with other recent findings (Geyt et al., 2016). As found in previous research, participants experienced relationships with services as conditional on adherence (Bjornestad et al., 2020). A focus on medication adherence is interwoven with underlying assumptions that those choosing to discontinue are predetermined to experience poorer outcomes (Cooper et al., 2019; Larsen-Barr & Seymour, 2021). The high rates of antipsychotic discontinuation without clinical support might therefore be maintained by the current nature of the mental health system. Clearer clinical guidance with specific details on discontinuation and tapering may encourage less risk averse practice among clinicians.

Study limitations

This qualitative study provided rich, detailed accounts of individual experiences of antipsychotic withdrawal. Due to the nature of the methods, the findings are not generalisable to a population but present a snapshot of the phenomenon coloured by participants’ personal awareness and memory and the selection of experiences they chose to share.

This study explored retrospective experiences. It is possible that current service provision has shifted, also historic recall may have impacted on detail participants reported. The participants were not required to have had a minimum duration of time spent on antipsychotics nor was their social context explored. These may have affected the presence and severity of withdrawal effects. Participants were not required to disclose full medication histories, therefore effects from other drugs could have compounded antipsychotic effects; polypharmacy may have affected withdrawal experiences and influenced the withdrawal outcomes. Marginalised groups may have been excluded as participation required access to the internet. Including experiences of support networks could have provided significant perspective on antipsychotic withdrawal.

Implications for practice

These findings suggest a need for clinical guidelines for the withdrawal of antipsychotics to reduce the confusion caused by contradictory advice given by different professionals and to improve the safety of attempts to withdraw. Practice recommendations should mirror the German schizophrenia guidelines (Gaebel et al., 2020) regarding explicit guidance for tapering, acknowledging the risk of withdrawal effects, and reiterating the importance of a stepwise taper. People with first-hand experience of antipsychotic withdrawal should be recruited to help create policies which sensitively address patient care. This is vital in expanding from the usually dominant clinical and academic perspectives (Russo, 2012). It is necessary to educate service providers about the variety of motivations for stopping antipsychotics and the realities of the effects of long-term antipsychotic treatment. In addition, it is necessary to address any blame-culture where clinician-supported discontinuation attempts are unsuccessful and may even result in legal action (Cooper et al., 2019; Moncrieff et al., 2020).

More needs to be done to move away from the historically paternalistic negotiation styles in psychiatry (Slade, 2017). The findings highlight the need to inform service users from the outset of what can be expected of withdrawal so that when they start to consider it they are aware of what facilitates positive withdrawal outcomes. This will require fully informing service users, prior to the initial prescription, of the risks associated with antipsychotic usage and discontinuation. This should also include raising awareness of minimal medication approach and medication-free treatment, currently officially offered only in Norway (Cooper et al., 2021; Oedegaard et al., 2020). Facilitating more holistic consultations and medication reviews exploring service users’ priorities and goals, are consistent with broader cultural shifts towards promoting person-centred care.

Implications for future research

There is a need for data from narrative, phenomenological, or experiential qualitative studies to influence practice(Greenhalgh et al., 2015). Together with findings from ongoing RCTs (Begemann et al., 2020; Moncrieff et al., 2019) they will help to provide evidence to formulate the necessary clinical guidelines outlining best practice for supporting antipsychotic discontinuation. Further qualitative research is needed to understand the complexities of antipsychotic withdrawal experiences, the wider social context of successful withdrawal including the impact of peer and family support, and the impact of guidance on support offered by clinical staff. Also, longitudinal research focused on medicine free options is required (Cooper et al., 2020).

Final conclusions

This study provides an in-depth exploration of lived experiences of antipsychotic withdrawal. It reveals the variety of effects secondary to taking and coming off antipsychotics, the wider impact of antipsychotics on the individual, and the meaningful motivations behind the discontinuation decisions. Findings show that antipsychotic withdrawal often involves a lack of information, poor support from services and a range of physical, emotional and functional effects. These are difficult to distinguish from relapse and may exacerbate symptoms enough to manifest a relapse.

This study joins an expanding area of experiential research related to antipsychotics, endorsing a shift towards fully informed choices. Results highlight the need for services to consistently recognize that antipsychotic users should be given the utmost support regardless of their views on continuation or discontinuation. There is an ongoing problem with antipsychotic withdrawal that needs to be acknowledged. A lack of clinical guidance hinders healthcare professionals and service providers from being able to support those wishing to discontinue.

Acknowledgements

To each participant, thank you for sharing your experiences with me (SRK). I have learnt more about the true nature of psychiatric drugs from your interviews than in any academic textbook or lecture. I will carry your stories with me throughout my future career in pharmacy.

Disclosure statement

No potential conflict of interest was reported by the authors.