About the Antidepressant Withdrawal and Deprescribing Project:
The Antidepressant Withdrawal and Deprescribing Project connected with people across Australia who have experienced negative side effects due to long-term antidepressant (and other psychiatric medication) use and withdrawal.
Together, we co-created this advocacy platform dedicated to amplifying the insights and solution ideas of people with lived experience. Our goals are to foster an open dialogue about the challenges surrounding antidepressant prescribing, deprescribing and withdrawal in Australia, and to advocate for vital improvements to information, support and services for those seeking to reduce or stop antidepressant use.
The people who contributed to this project have been profoundly impacted by their experiences. Their intentions and motivations are heartfelt, driven by personal and collective pain, relentless resolve, and a strong desire and hope for meaningful change.
This is an opportunity to talk about something that is so wrong that nobody talks about it. It’s really happening in our lives. It’s important that we make it more visible through advocacy. [project contributor]
LELAN thanks Dr Mark Horowitz, co-author of the Maudsley Deprescribing Guidelines, and Professor Jon Jureidini, Director of the Critical & Ethical Mental Health research group at the University of Adelaide, for their leadership and contributions to this project. We also thank our philanthropic donor and the Office of the Mental Health Commisisoner for South Australia for their support of different components of this project.
Download the Antidepressant Withdrawal and Deprescribing Project ‘Starting Stopping’ Zine:
Many Australians could reasonably understand and expect what being prescribed an antidepressant involves. Almost none of us know what can happen when we increase, decrease, or stop these medications after long term use. Withdrawal effects can be long-lasting and debilitating.
In this Zine, we have gathered the stories, art, and lived experiences of people who have been through this.
Click the image to open the Zine. It Is a big file so please allow some time for it to load.
Reasons contributors shared about why this work matters:
good people are contributing to harm
Good people are doing harm, which is difficult to process, but lived experience can open the eyes of good people in ways that practice can evolve.
power imbalances need to shift
I want to expose psychiatry’s continued abuse of people.
truth telling needs to occur in information
Information does not accurately represent the side effects, consequences and withdrawals or actual
timelines needed. This is what the Australian public is presented with.
better information is needed for those who take antidepressant medication
Public information is geared towards professionals and is not explicitly related to tapering. There is no information about abruptly stopping your antidepressants, withdrawal or having safer tapering protocols. It’s hard to navigate and not written for a lay person.
there is a lack of awareness by clinicians that withdrawal effects can be long-lasting and debilitating
They consider how long it is out of your body but they’re missing the point that these medications change the architecture within the brain, body, gut, nervous system. That is where the problem is, you’ve developed a dependence.
withdrawal effects are being misdiagnosed as the return of people's underlying mental health condition
Doctors need to be aware they are misdiagnosing people when they are coming off medication by saying that this is a return of your illness that you were prescribed the medication for.
existing approaches need to be challenged and expanded beyond medical or clinical solutions only
Medication or nothing. The guidelines for depression treatment is now lifestyle change. The writing is all there but practice/culture is at odds.
alternatives are needed
They don’t offer alternatives when you are in dark spaces. You want and need help, they say you need to medicate. You say yes because you don’t have any other options or alternatives.
young people are at risk of being pathologised because the system doesn't know what to do with them
Young people are being misdiagnosed… [and] prescribed antidepressants because the system doesn’t know what to do with them.
Anti-depressant withdrawal is a combination of many issues. It’s a deep and complex problem, needing multiple perspectives and solutions, not just one. [project contributor]
Attend our In-person Event in Adelaide December 3rd 2024:
As a lead-in to the LELAN Annual General Meeting (AGM) we will be holding an Antidepressant Withdrawal and Deprescribing Panel event. This session will explore information about and lived experiences of people who have experienced negative side effects due to long-term antidepressant (and other psychiatric medication) use and withdrawal.
You can read more about the event and our guest speakers on our Humanitix page here.
Links to information and resources:
These resources have been shared by people with lived experience of negative side effects due to long-term antidepressant use and withdrawal, and other contributors to this project. They are not intended to offer professional medical advice. If you are considering starting, changing, or stopping medications, or making any decisions regarding your treatment and support, please reach out to your team and seek input tailored to your circumstances and needs. A brief terminology guide of key words related to this topic can be accessed here.
Check back regularly as these resources will be updated from time to time.
News Articles & Posts:
* [MEDICAL REPUBLIC]: The ‘how to’ of antidepressant deprescribing. July 2024. ‘The RACGP’s endorsement of the Maudsley Deprescribing Guidelines as an ‘accepted clinical resource’ marks shifting tides for antidepressant use in Australia.‘
* [THE GUARDIAN]: Australian doctor who ‘almost died’ writes landmark guidance on how to safely stop using antidepressants. July 2024. ‘Dr Mark Horowitz’s darkest days propelled him to examine why so many patients struggle to cease the drugs once their depression resolves.‘
* [newsGP]: RACGP endorses ‘landmark’ safe deprescribing guide. July 2024. ‘The RACGP has accepted the newly released Maudsley Deprescribing Guidelines as a recognised evidence-based clinical resource.’
* [AUSTRALIAN PHARMACIST]: 5 things to know about antidepressants and discontinuation. June 2024. ‘While patients can easily obtain a prescription for antidepressants from their GP, stopping the medicines is not as simple. Australian Pharmacist delves into how antidepressants are prescribed and used, and new guidelines designed to overcome the difficulties of cessation.’
* [THE AUSTRALIAN]: Clinical guidelines tells doctors how [to] prescribe drugs, but not when to stop them. June 2024. ‘Clinical guidelines in medicine are failing to provide doctors with adequate information on how to stop or reduce the dosage of medicines that may be harmful or unnecessary, amid growing concern over high rates of inappropriate prescribing of drugs such as antidepressants. ‘
* [THE GUARDIAN]: Australia’s health watchdog warns patients are being overprescribed psychotropic medication. July 2022. ‘Royal commissions into disability and aged care found ‘a fundamental problem’ with how the drugs were used.‘
* [newsGP]: Depression probably not caused by chemical imbalance: Study. July 2022. ‘For three decades, people have been deluged with information suggesting that depression is caused by a ‘chemical imbalance’ in the brain – namely an imbalance of a brain chemical called serotonin. However, our latest research review shows that the evidence does not support it.’
Documentaries & Video/ Audio Media:
* [PANEL PRESENTATION]: Maudsley Deprescribing Guidelines – from publication to practice. July 2024. Co-hosted by the NSW Mental Health Commission and the RACGP. ‘The panel shared their perspectives on the current use of psychotropic medicine, approaches, roles and experiences of deprescribing.’
* [MEDIA REPORT]: RN Drive: ‘Waking in terror’: one doctor’s experience of quitting antidepressants. Aug 2024. ‘While antidepressants can be life saving for many people, weaning off these drugs can be a traumatic and painful experience. After firsthand experience of antidepressant withdrawal, one Australian doctor has developed new landmark guidance for GPs to assist their patients in ditching the drugs safely.’
* [PODCAST]: The GP Show: Deprescribing Psychotropic Medications with Dr Mark Horowitz. June 2024. ‘Dr Mark Horowitz is a training psychiatrist, split between UK and Australia, working in London as a Clinical Research Fellow in the NHS and an Honorary Clinical Research Fellow at University College London.‘
* [MEDIA REPORT]: The Project: Plea for more understanding around antidepressant withdrawal. Feb 2024. ‘Over 3 million Australians take antidepressants daily, but the experience of trying to stop taking them can be terrifying.’
* [VIDEO]: The Antidepressant Story. August 2023. ‘While many people say they have benefited from taking them [antidepressants], this week’s Four Corners from the BBC’s Panorama reveals the physical and mental side effects of the drugs can be wide-ranging and are often downplayed.’
* [DOCUMENTARY]: Medicating Normal. 2020. ‘This full-length, award-winning documentary unearths the shattering truth that millions of people worldwide are injured by prescribed psychiatric medications. Interweaving stories of harm with expert testimony, the film reveals how a profit-driven industry hides the risks of long-term use. This untold story is a compelling call to examine the consequences of medicating normal human suffering.’
* [VIDEO & AUDIO MATERIAL]: Featuring Dr. Mark Horowitz. Various. Covers key topics on antidepressant withdrawal and personal experiences.
* [DOCUMENTARY]: The Happy Pill. 2018. Follows a Norwegian woman’s 10-year journey through the mental health system and medication withdrawal. (Norwegian with English subtitles).
Websites:
* Website by Dr Mark Horowitz. Antidepressant withdrawal from both sides of the desk. ‘An [Australian working in London] academic psychiatrist in training on how to stop psychiatric drugs.’
* Lived Experience Advisory Panel for Prescribed Drug Dependence.‘A national [UK] advisory panel of people with lived and professional experience of providing support, advocacy and research for prescribed drug dependence.’
* Mad in America (MIA) Drug Withdrawal Resources. ‘MIA’s withdrawal pages are meant to provide resources, research findings, and personal stories relevant to making informed choices about withdrawing from psychiatric drugs.
In addition to the general information, there are links to withdrawal information specific to each class of drug.’
* Website by Dr Joanna Moncrieff. ‘A practising psychiatrist and a part-time academic and author with an interest in the history, philosophy and politics of psychiatry, and particularly in the use, misuse and misrepresentation of psychiatric drugs.’
* Inner Compass. ‘Inner Compass Initiative is dedicated to helping people make more informed choices about taking and withdrawing from psychiatric medications.’
Online Peer Support Groups:
* Surviving Antidepressants. ‘A community of volunteers providing peer support for tapering all psychiatric drugs and their withdrawal syndromes.’
There is also a Surviving Antidepressants Facebook Group.
* BenzoBuddies. ‘Online peer forums assisting people through benzodiazepine withdrawal.’
Maudsley Deprescribing Guidelines:
* Mark Horowitz and David M. Taylor. 2024. The Maudsley Deprescribing Guidelines: Antidepressants, Benzodiazepines, Gabapentinoids and Z-drugs. The Maudsley Prescribing Guidelines Series.
‘The handbook is written for psychiatrists, general practitioners, nurses, pharmacists, or anyone involved in the care of people with mental health conditions, as well as interested members of the public (it may be the perfect gift for your prescriber) and outlines step-by-step instructions for how to safely stop all commonly used antidepressants, benzodiazepines, gabapentinoinds and z-drugs, with fast, moderate and slow schedules and how to modify these for an individual.
The handbook explains the broad principles about tapering psychiatric medications including the benefits of gradual tapering, why it makes sense to taper more slowly at lower doses (hyperbolic tapering), how to manage withdrawal effects (and minimise them) and tips and tricks for the process, including troubleshooting the problems that can arise on reducing these medications.
It covers about 50 commonly used psychiatric medications.’
Reports & Academic Papers:
* [UK REPORT]: Beyond Pills All-Party Parliamentary Group. 2024. Shifting the Balance Towards Social Interventions: A Call for an Overhaul of the Mental Health System.
‘Preface: Shifting the Balance Towards Social Interventions calls for radical change with a shift towards more social interventions and away from pharmaceutical and other purely biomedical ones. This may seem counterintuitive in a country accustomed to think about mental illness as an individual problem requiring medical treatment. The report, however, points to the evidence of the impact on individuals of toxic relationships, family dysfunction and breakdown, abuse, bullying, violence and other traumatic events and to the role of wider societal factors such as economic insecurity, poverty, poor housing, inadequate nutrition, and damaged communities. It goes on to set out six principles for mental health reform.
… Implementation will be difficult. It requires major changes in clinical practice and professional training as well as shifts in public perceptions. Equally importantly, as the report describes so well, pharmaceutical companies have had far too much influence and have benefitted accordingly. Medicines will still be needed for some patients, but the existing levels of over-prescribing must be tackled.’
* [ACADEMIC PAPER]: John Read, Stevie Lewis, Mark Horowitz and Joanna Moncrieff. The need for antidepressant withdrawal support services: Recommendations from 708 patients. Psychiatry Research 326 (2023) 115303.
‘Abstract: Approximately half of the tens of millions of people currently taking antidepressants will experience withdrawal symptoms when they try to reduce or come off them. Nearly half of these describe their symptoms as severe in surveys. Many prescribing doctors seem ill-informed and unprepared to provide effective discontinuation advice and support, often misdiagnosing withdrawal as a relapse of depression or anxiety. 708 members of online support groups for people on antidepressants, from 31 countries, completed a sentence in an online survey: ’A public health service to help people come off antidepressants should include …………….’. Two independent researchers categorised their responses into themes, and then reached consensus via discussion. Seven themes emerged: ‘Prescriber Role’, ‘Information’, ‘Other Supports/Services’, ‘Strong Negative Feelings re Doctors/Services etc.’, Informed Consent When Prescribed’, ‘Drug Companies’ and: ‘Public Health Campaign’. The most frequently mentioned requirements of the Prescriber Role were that prescribers be properly informed, provide small doses/liquid/tapering strips, develop a withdrawal plan and believe patients about their withdrawal experiences. The most frequently recommended other services were psychotherapy/counselling, support groups, patient led/informed services, nutrition advice, 24-hour crisis support and ‘holistic/lifestyle’ approaches. Many respondents were angry about how uninformed their doctors were and how they had been treated.‘
* [ACADEMIC PAPER]: Edward White, John Read and Sherry Julo. The role of Facebook groups in the management and raising of awareness of antidepressant withdrawal: is social media filling the void left by health services? Therapeutic Advances in Psychopharmacology 2021; 11: 1-18.
‘Background: Antidepressant withdrawal is experienced by about half of people who try to reduce or come off their medication. It can be a debilitating, long lasting process. Many clinicians misdiagnose or minimise symptoms, inadvertently prolonging suffering. Most are unable to help patients safely taper off. There has been little research into the peer support communities that are playing an increasingly important role in helping people withdraw from psychiatric medications.
… Discussion: The results are discussed in the context of research on the prevalence, duration and severity of antidepressant withdrawal. We question why so many patients seek help in peer-led Facebook groups, rather than relying on the clinicians that prescribed the medications. The withdrawal experiences of tens of thousands of people remain hidden in these groups where they receive support to taper when healthcare services should be responsible. Further research should focus on the methods of support and tapering protocols used in these groups to enable improved, more informed support by clinicians. Support from Governments and healthcare agencies is also needed, internationally, to address this issue.’
* [ACADEMIC PAPER]: Framer, A. What I have learnt from helping thousands of people taper off antidepressants and other psychotropic medications. Therapeutic Advances in Psychopharmacology 2021, Vol. 11: 1–18.
‘Abstract: Although psychiatric drug withdrawal syndromes have been recognized since the 1950s – recent studies confirm antidepressant withdrawal syndrome incidence upwards of 40% – medical information about how to safely go off the drugs has been lacking. To fill this gap, over the last 25years, patients have developed a robust Internet-based subculture of peer support for tapering off psychiatric drugs and recovering from withdrawal syndrome. This account from the founder of such an online community covers lessons learned from thousands of patients regarding common experiences with medical providers, identification of adverse drug reactions, risk factors for withdrawal, tapering techniques, withdrawal symptoms, protracted withdrawal syndrome, and strategies to cope with symptoms, in the context of the existing scientific literature.‘
* [UK REPORT]: All-Party Parliamentary Group for Prescribed Drug Dependence. 2018. Antidepressant Withdrawal: a Survey of Patients’ Experience by the All-Party Parliamentary Group for Prescribed Drug Dependence.
‘Conclusion: The responses to this survey make clear the ruinous impact of antidepressant withdrawal on some individuals, as well as the failure of those responsible for their care to understand and to treat the problem. It also reveals that other government-funded sources of support are entirely inadequate, with individuals left to fend for themselves or rely on internet-based support groups.
… This survey provides compelling evidence that antidepressant withdrawal can have devastating, lifechanging consequences for some individuals. Doctors, psychiatrists and other medical professionals must urgently be provided with appropriate training in this area, both at medical school and as part of their continuing professional development. Clinical guidelines must also be updated to reflect the actual incidence, severity and duration of antidepressant withdrawal, and to enable doctors, psychiatrists and other practitioners to provide appropriate care, including slow tapering protocols. Lastly, government must ensure that individuals affected by withdrawal have access to proper support services, which we recommend should include local support groups as well as a national 24 hour helpline and accompanying website.’
This is encouraging. This journey started many years ago. I remember when I felt so alone and so frightened. I had no support from the medical field, family and friends, since they didn’t believe me. This is so vital, and such improvement work and I am so passionate about it. [project contributor]
Connect with our team:
If you have further questions about this project please reach out to the LELAN team via info@lelan.org.au .