The New Script for Mental Health campaign is continually conducting research and policy analysis to create an evidence base and deposit of resources around mental health rights, specifically centred around our Give 5 framework. Step 2 of the New Script for Mental Health’s Give 5 framework calls on government to Be Active in challenging the over-prescription of drugs, respond to individual needs, and provide different, community-based options for healing and creative, peer-led interventions. Both the United Nations and the World Health Organisation have called on governments to prioritise community-based mental health services. However, we know that options currently available for people experiencing mental health challenges are far too narrow and treatment options are often limited to antidepressants.

We are working to advance patients’ rights around prescription of antidepressant medication as part of mental health care. Part of this is collating evidence-based information on the risks and benefits of these medications, the experiences of patients and their families, and alternative and complementary options for treatment.

The ‘patient voice’: patients who experience antidepressant withdrawal symptoms are often dismissed, or misdiagnosed with relapse, or a new medical condition

This blog provides a summary and review of a research paper by Guy, A. et al (2020) on patients’ experiences antidepressant withdrawal symptoms.

For decades, official guidance framed antidepressant withdrawal as “usually mild and self-limiting”. That characterisation has had real consequences. When patients experience severe or long-lasting symptoms after reducing or stopping antidepressants, they are frequently dismissed, misdiagnosed with relapse, or told they have developed a new medical condition.

Guy et al.’s (2020) recent analysis of 158 patient accounts submitted to parliamentary petitions in Scotland and Wales sheds light on how this happens in practice. The submissions, mostly from people prescribed antidepressants over many years, reveal a pattern of systemic failure. A lack of informed consent, poor recognition of withdrawal and inadequate tapering advice left patients to navigate antidepressant withdrawal largely on their own.

When patients attempted to stop antidepressants, the consequences were often severe. More than four-fifths reported new and debilitating symptoms after dose reduction, including anxiety, insomnia, cognitive impairment, agitation, neurological symptoms and suicidality. Crucially, almost half said their doctor did not recognise these symptoms as withdrawal. Instead, patients were told they were relapsing, diagnosed with “medically unexplained symptoms” or functional neurological disorders, hospitalised, or prescribed additional drugs. This misdiagnosis is not surprising. Until recently, NICE guidance downplayed withdrawal severity, making it reasonable within that framework for clinicians to assume that intense or prolonged symptoms could not be withdrawal at all. Updated NICE guidance now acknowledges that withdrawal can be severe and last for months or longer, but the legacy of earlier guidance remains embedded in clinical practice. The impact on patients was profound. Many lost jobs, relationships, housing, financial security and trust in healthcare. More than half sought help outside the NHS, relying on online forums and peer-led groups for tapering advice and validation, often because these were the only spaces where they felt believed.

The findings echo wider concerns raised in reviews of other medical harms, namely that when patient testimony conflicts with professional assumptions, it is often discounted. Yet patient evidence is precisely what reveals systemic blind spots. Patients must be given meaningful information about antidepressant risks, including withdrawal, to support informed consent. Clinicians need practical, evidence-based guidance on tapering and on distinguishing withdrawal from relapse. Non-pharmacological support should be genuinely available, not nominally recommended. And crucially, health systems must listen to patients, not as an afterthought, but as an essential source of knowledge. Without this shift, withdrawal will continue to be misread as illness, and avoidable harm will continue to be reproduced by the very systems meant to care.

You can find a range of evidence sources that support Step 2: Be Active here. These sources are drawn from both international and local levels, including the United Nations and WHO, academic journals and books, parliamentary and NGO reports, and analysis by New Script for Mental Health.