Mad in America: Rethinking Mental Health

On MIA Radio this week, Akansha Vaswani and Dr Peter Groot discuss Tapering Strips, a novel and practical solution for those who wish to taper gradually from a range of prescription drugs. Akansha is a doctoral candidate at the University of Massachusetts, Boston and her dissertation research will involve interviewing psychiatrists in the US about their experiences helping people stop or reduce their dose of antidepressant medication. Dr Groot is a researcher and geneticist who has led the development of Tapering Strips. In a recent study, published in the journal Psychosis, Dr Groot, together with Jim van Os, reported on the results of their trial which recorded the experiences of people using Tapering Strips. In this episode we discuss: What motivated Peter to be interested in and study the effects of coming off antidepressants drugs. That the observational study reported in Psychosis was based on questionnaires completed by users who had made use of tapering medication (Tapering Strips) to slowly reduce their medication dosage. How the questionnaire asked about withdrawal symptoms and the ease of tapering using the strips and whether people had tried to withdraw previously using conventional methods. That Tapering Strips offer a flexible and necessary addition to standard doses that have been registered by the pharmaceutical companies. That current guidelines advise doctors to let patients start on the same recommended dose of an antidepressant, without taking into account large differences that exist between patients (weight, sex, etc). How we would be surprised if, when we came to buy shoes or clothes, our choices were limited to only a few sizes, but we don’t question this limitation with our medications. How current guidelines are based on group averages and do not help a doctor to determine how a given individual patient should taper. How shared decision making, in which the patient and the doctor work in a collaborative way, can make tapering easier. How shared decision making has contributed to the success of the use of tapering medication and the availability of tapering medication makes shared decision making practically possible. How shared decision and the availability of tapering medication makes life easier for the doctor as well as for the patient. How working initially as a volunteer to develop Tapering Strips brought Peter into contact with Professor Jim van Os and the User Research Centre of Maastricht University. That, in the study, 1,750 questionnaires were sent, with 1,164 received, a response rate of 68%. Of those returned, 895 said their goal was to taper their antidepressant drug completely and 70% succeeded in this goal. That the median time taken for people in the study to withdraw from Venlafaxine was 56 days or two Tapering Strips. There were a variety of reasons reported for those who didn’t reach their goal, including the fact that some of the patients were still tapering. Other reasons reported for not withdrawing completely were due to the occurrence of withdrawal symptoms, relapse of an original condition or even issues related to reimbursement of the cost of the tapering medication by insurance companies. That 692 patients reported that previous attempts to withdraw had failed in comparison to the successful use of Tapering Strips. That people using multiple drugs should only ever taper one medication at a time and in discussion with a medical professional. That Peter’s goal for Tapering Strips is to make sure that people that want to withdrawal gradually can access Tapering Strips and have the cost reimbursed by health insurers. That Tapering Strips were not developed to get everyone off their antidepressant drug but to enable patients to get to a dosage that provides benefit for them (which can be zero) while minimising adverse effects. That people outside the Netherlands can get Tapering Medication, but only with a prescription signed by a certified doctor, instructions and receipt/order forms can be found at taperingstrip.org. That Tapering Strips are also available for antipsychotics, sedatives (benzodiazepines), analgesics and for some drugs other than psychotropics, like some anti-epileptic drugs, which are currently being developed. That Peter warns against tapering by taking doses on alternating days, particularly for drugs like paroxetine or venlafaxine that have a short metabolic half-life, because this will lead to more severe withdrawal symptoms. Relevant Links: Tapering Strips (website of the User Research Centre of Maastricht University) Treatment guidelines for the use of tapering strips Summary of the tapering study in the journal Psychosis (blog) Tapering Strips study from the journal Psychosis Peter Groot interviewed on Let's Talk Withdrawal Claire shares her experience with Tapering Strips (YouTube) Petition requesting use of Tapering Strips in the UK Mad in America report on Tapering strips study Prime Time for Shared Decision Making Mandatory Shared Decision Making © Mad in America 2018

This week on MIA Radio we provide an update on a complaint made to the UK Royal College of Psychiatrists by a group of thirty academics, psychiatrists and people with lived experience. We hear from both Professor Sami Timimi and Professor John Read who discuss recent events including the latest response from the Chief Executive Officer of the College. Relevant Links: Read the latest update on Mad in America Formal Complaint to the UK Royal College of Psychiatrists Royal College Of Psychiatrists Challenged Over Potentially Burying Inconvenient Antidepressant Data Professor John Read: The Royal College of Psychiatrists and Antidepressant Withdrawal UK Royal College Dismisses Complaint © Mad in America 2018

This week, we interview Dr Peter Gordon. Dr Gordon describes himself as a gardener with an interest in medicine. He trained in both medicine and landscape architecture before specialising in psychiatry and now works with older adults in Scotland. In addition, he is an activist and campaigner and has a range of creative interests including filmmaking, photography, writing and poetry. In this interview, we walk about Peter’s own experiences of psychiatric treatment and how we need to address the divide that exists between the arts and the medical sciences. In this episode we discuss: What led Dr Gordon to have combined interests in the arts and the sciences, training both in architecture and medicine. How Peter was interested in the plurality of thinking required for psychiatry as opposed to general medicine. How he feels that his training in both the arts and the sciences led to a more rounded appreciation of why purely biological approach might miss opportunities to help people. How Peter became an activist, partly in response to the commonly taught subjective/objective diagnostic approach. How we should be focussed on the potential of any medical intervention to cause harm and should consider this carefully alongside any potential benefit. How we need to take account of all experiences to ensure we provide the maximum benefit and minimum harm to people. Peter’s own experiences with the mental health system, taking antidepressant drugs and experiencing treatment within a psychiatric hospital. How stopping his antidepressant drug resulted in withdrawal effects and led to Peter’s only episode of severe depression. Why Peter is concerned that we seem to be downplaying the experiences of people who have struggled with psychiatric drugs. How Peter’s experiences have influenced his approach to prescribing. The dominance of the biological approach and why it should not dictate how we respond to individual experiences. How the evidence is starting to show that diagnosis can often disempower and bring about ‘otherness’. Peter’s plea for people to be kind to one another and work together to maximise well-being. Relevant links: Peter’s blog: Hole Ouisa The caption is wrong Paroxetine tablets [Film-coated] Peter’s films on Vimeo Mary Midgley Nathan Filer, The Shock of the Fall Raymond Tallis To get in touch with us email: podcasts@madinamerica.com © Mad in America 2018

This week on MIA Radio we interview Sera Davidow, a psychiatric survivor and prolific activist for the human rights of people labeled mentally ill. Sera serves as the Director of the Western Massachusetts Recovery Learning Community and is a founding member of the Hearing Voices USA Board of Directors. Through her work, she has gained a range of experiences including starting up a peer respite, opening resource centers, and producing educational materials on non-coercive, non-pathologizing alternatives to the traditional mental health system. Sera is a regular blogger for Mad in America and has written extensively on the topics of forced treatment and sexual violence. In this interview, we discuss the parallels and intersections between coercive psychiatric care and sexual assault. In this episode we discuss: Sera’s lived experience as a psychiatric survivor and survivor of sexual violence. The similarities between sexual violence and forms of psychiatric abuse including forced drugging, forced intubation, forced catheterization, strip searches, restraint, and containment How even seemingly minor or routine parts of psychiatric hospitalization, such as regularly monitoring patients, can be violating The role that victim-blaming and gaslighting play in both sexual violence and psychiatric coercion That the language and terminology of the mental health system such as “mental illness,” “noncompliance,” and “anosognosia” serve to perpetuate violence That people’s discomfort with big emotions and taboo topics often prevent trauma survivors from speaking about their experiences within psychiatric settings How we can help providers and the general public understand the trauma and violence of psychiatric coercion Relevant Links: Sera Davidow A World That Would Have Us Doubt: Rape, the System, and Swim Fans Us, Too: Sexual Violence Against People Labeled Mentally Ill Feminism 101: What is Gaslighting? To get in touch with us email: podcasts@madinamerica.com © Mad in America 2018

This week, we interview Laura Delano. Laura is Co-Founder and Executive Director of the Inner Compass Initiative and The Withdrawal Project, which aim to create safe spaces for people to connect and the opportunity to learn about and be guided through the process of getting beyond the mental health system and off psychiatric drugs.  The passion she feels for the mission and vision of ICI arises from the fourteen years she spent lost in the mental health system and the journey that she’s been on since 2010, when she chose to leave behind a “mentally ill” identity and the various treatments that came with it, and gradually began to rediscover and reconnect with who she really was and what it means to suffer, struggle, and be human in this world.  Since becoming an “ex-patient”, Laura has been writing and speaking about her personal experiences and about the broader social and political issues sitting at the heart of “mental illness” and “mental health”. Since 2011, she has worked both within and beyond the mental health system. In the Boston area, she worked for nearly two years for a large community mental health organization, providing support to and advocating for the rights of individuals in emergency rooms, psychiatric hospitals, and institutional “group home” settings. After leaving the “inside” of the mental health system, she began consulting with individuals and families seeking help during the psychiatric drug withdrawal process. Laura has also given talks and workshops in Europe and across North America, facilitated mutual-aid groups for people in withdrawal, and organized various conferences and public events such as the Mad in America International Film Festival.  In this interview, we got time to talk about Laura’s personal experiences of the mental health system and what led her to co-found the Inner Compass Initiative and The Withdrawal Project. In this episode we discuss: Laura’s experiences as a patient in the mental health system, starting treatment aged thirteen and leaving the system behind aged 27. How she spent much of that time as a compliant patient, taking the medications and following the advice of her doctors. That, by 2010, she was on 5 medications (Lithium, Abilify, Lamictal, Effexor and Ativan) and had spent the last decade becoming worse and unable to properly engage with life. How she came to read Anatomy of an Epidemic by Robert Whitaker and that it was a profound moment of realisation. That Laura decided to take control of her life and became determined to get off the drugs as quickly as possible. How traumatic it was to come to the realisation that almost everything she had been told during treatment was overly simplistic or incorrect. That Laura did experience feelings of being a victim of psychiatry, but realised that this increased her emotional dependency on psychiatry and that it was necessary to move beyond that to feel free. That these experiences made Laura passionate about her own process of healing and rediscovering herself and helping others to find their way back to themselves after being psychiatrized. That as she healed she moved into a space of acceptance and gratitude and felt that the period around three years off the drugs was when she came to feel really alive and motivated again. That Laura feels that if we are going to move beyond the mental health system, it is about helping people to realise they don't need the mainstream system and point them to alternatives at a local level and creating physical spaces where people can come together. How Laura came to co-found The Inner Compass Initiative and The Withdrawal Project which aim to create safe spaces for people to connect and the opportunity to learn about and be guided through the process of getting beyond the mental health system and off psychiatric drugs. That The Withdrawal Project was highlighted in a recent New York Times article discussing antidepressant withdrawal. How ICI and TWP present information on many aspects of psychiatric drugs and withdrawal to help guide and inform people who do want to start the journey off their psychiatric drugs and away from the mental health system. That TWP connect is a free peer to peer networking platform that allows people to connect one on one with others who have similar experiences. How a similar peer to peer system is available on ICI to enable conversations about moving beyond the mental health system. That Laura wants to encourage people not to give up because we do heal from psychiatric drugs and that we need to spread that message far and wide. The need to both learn and unlearn when approaching how we take back our power and control of our lives after psychiatric treatment. How important it is to properly prepare before starting to taper from psychiatric drugs and how the Withdrawal Project can enable that preparation. The ‘speed paradox’ when coming off psychiatric drugs. How people can find out more about The Inner Compass Initiative and The Withdrawal Project. That Laura is keen to support local community initiatives to get underway. Relevant links: The Inner Compass Initiative The Withdrawal Project TWP Connect Learn about psychiatric drug withdrawal Inner Compass Initiative’s The Withdrawal Project Gets Mention in The New York Times—Is the Tide Finally Turning? The New York Times - Many People Taking Antidepressants Discover They Cannot Quit Read more about Laura’s journey into and out of the mental health system Laura’s presentation in Alaska, 2015 Anatomy of an epidemic by Robert Whitaker

Today on MIA Radio we have a special episode which is devoted to recent developments in the UK involving a formal complaint lodged with the UK Royal College of Psychiatrists.  Professor John Read from the University of East London took time out to bring us up to date on the response to the complaint which was lodged on behalf of a group of thirty academics, psychiatrists and people with lived experience. Relevant links: Read the full reply letter on Mad in America Hear the Royal Society of Medicine’s podcast interview with Professor Wessely and Dr Clare Gerada The New York Times - Many People Taking Antidepressants Discover They Cannot Quit

This week on MIA Radio, we interview Jeffrey Michael Friedman, a clinical social worker and an activist in the psychiatric survivor's movement. Jeffrey provides trauma-informed therapy to victims of various forms of abuse and violence, including those who have survived abuses within the mental health system. In addition to his work in the mental health field, Jeffrey is actively involved in the harm reduction movement, which supports human rights and non-coercive services for people who actively use drugs. In this interview, we discuss why forced psychiatric treatment is a form of trauma and its impact on victims and their families. In this episode we discuss: How Jeffrey’s early experience with the alternative school system led to being othered and ostracized, which influenced his later involvement with the psychiatric survivor's movement. How the trauma-informed perspective offers an alternative framework to the traditional medical model of mental health. Why forced psychiatric treatment meets the definition of trauma, and more specifically, betrayal trauma. The psychological effects of involuntary commitment forced drugging and outpatient commitment. That forced treatment reinforces the notion that distress or crisis results from individual pathology rather than familial mistreatment or trauma. That victims of forced treatment may be less likely to seek medical care for physical health issues or receive proper medical treatment. How survivors can heal from forced treatment. The parallels between the harm reduction movement and the psychiatric survivor's movement, and similarities between safe consumption sites and peer services. That the addiction treatment industry, including 12-step programs, can be coercive in similar ways to the mental health system. Relevant Links: Jeffrey Michael Friedman, LCSW What is a Betrayal Trauma? What is Betrayal Trauma Theory? The Power Thinker– a brief description of Michel Foucault’s work on power and surveillance. Altruism Born of Suffering Principles of Harm Reduction Thomas Szasz: The Right to Take Drugs The Legal Industry for Kidnapping Teens – a description of the physically forceful transportation services that are sometimes utilized to transport teenagers to addiction treatment. Jeffrey Michael Friedman on SoundCloud Jeffrey can be followed on Twitter: @jmfriedman and Instagram: traumainformedpodcast Mad In America's Psychiatric Drug Withdrawal course To get in touch with us email: podcasts@madinamerica.com © Mad in America 2018

This week, we interview Dr Russell Razzaque. Dr Razzaque currently works as a consultant psychiatrist and associate medical director in east London and, together with colleagues, he is leading a pioneering multi-centre Open Dialogue pilot in the UK National Health Service. In 2014 he released his book ‘Breaking Down Is Waking Up’ in which he explores alternative views of mental distress, their relationship to consciousness and comparisons to forms of spiritual awakening. In this interview, we discuss the relationships between mindfulness, Acceptance and Commitment Therapy and Open Dialogue and how the UK NHS is approaching the worlds first randomised controlled trial of Open Dialogue interventions for people struggling with emotional or psychological distress. In this episode we discuss: What led Dr. Razzaque to his interest in psychiatry and in particular some of the more unconventional aspects of the profession. How beginning to practice mindfulness nearly 20 years ago led to Russell starting to feel an incongruence between the dominant philosophy in psychiatry and what he was learning from his own mindfulness practices. That the dominant philosophy is one of trying to help people remove their pain and remove them from difficult and uncomfortable experiences, but in his own personal development, he was learning to sit with the pain and finding that valuable. How this led to an interest in novel therapeutic approaches like Acceptance and Commitment Therapy, originally pioneered by professor Stephen Hayes. That Russell felt disillusioned with the way that UK mental health services and systems were organised and realised that creating better outcomes for people would require system-wide change. How Russell came to be one of the leading figures in the worlds first multi-centre, fully randomised Open Dialogue Trial which seeks to establish the evidence base for Open Dialogue. That the trial involves eight NHS Trusts across the UK and that several hundred practitioners have already been trained in Open Dialogue therapy. That during the trial there will be randomly selected postcodes receiving Open Dialogue interventions compared with randomly selected postcodes receiving treatment as usual and that the results will be compared after three years. That this trial will allow us to answer questions about the efficacy of Open Dialogue because we will have built a strong evidence base. How colleagues have reacted to the Open Dialogue trial and why some might be threatened by the need to change. That Open Dialogue is a need adapted approach, so it is not fundamentally against any of the conventional interventions, but it encourages people to make their own choices, so medication use tends to significantly reduce. That it is necessary to change the power dynamic in current systems and approaches because the current methods lead to dependency, whereas Open Dialogue is about empowering and liberating the individual. That Russell is encouraged to find that many psychiatrists are willing to open up to new ways of thinking about mental and emotional distress. How spirituality and psychiatry can work hand-in-hand and how accepting spiritual explanations can sometimes lead to better understanding of personal experiences. That, in future, the system needs to change such that interpersonal relationships are put first and are seen as the key to successful outcomes. That we also need to adapt so that clinicians are trained to be present with distress and not just try to remove it.  How people can hear Russell speak at the upcoming Compassionate Mental Heath event in South Wales, being held on April 25th and 26th 2018. Relevant links: Russell Razzaque Breaking Down is Waking Up Open Dialogue trial Developing Open Dialogue Compassionate Mental Health

Dr. Duncan Double, a Consultant Psychiatrist and founder of the Critical Psychiatry Network, shares his journey from early interests in Freud to his critical stance on mainstream psychiatry. He discusses how traditional practices often overlook the personal contexts of patients. The conversation also delves into the controversial use of antidepressants and the importance of community-based care while minimizing coercive treatment methods. Double advocates for a nuanced understanding of mental health, challenging the idea that mental illness is merely a brain disease.

This week on MIA Radio, we interview Tina Minkowitz. Tina is an attorney and survivor of psychiatry who represented the World Network for Users and Survivors of Psychiatry in the drafting and negotiation of the United Nations’ Convention on the Rights of Persons with Disabilities. Tina is a strong proponent for the abolition of all forced psychiatric interventions and played a major role in attaining a shift in international law in favor of such a ban. In this interview, we talk about how the United Nations came to support the abolition of forced psychiatric treatment and why Tina believes that abolition of forced treatment, not reform, is necessary. In this episode we discuss: How Tina came to be interested in the intersection of international human rights law, disability rights law, and the issue of forced psychiatric treatment Why Tina believes in the abolition, not reform, of forced psychiatric treatment That the threat of forced treatment against some psychiatric survivors can be traumatic to the entire survivor community The barriers to the abolition of forced treatment, including public perceptions of people labeled mentally ill and lack of awareness of non-coercive alternatives That advocacy is needed to eliminate the 72-hour hold, not just ECT, forced drugging, or outpatient commitment Why forced treatment constitutes physical violence That we don’t need to put in place alternatives to the current mental health system in order to demand an immediate stop to forced treatment How mental health policy should center what we now consider alternative practices, such as peer-run services, hearing voices groups, and in-home supports How the issue of forced treatment fits within the disability rights framework Tina’s current activities with the Center for the Human Rights of Users and Survivors of Psychiatry Relevant Links: The Center for the Human Rights of Users and Survivors of Psychiatry Campaign to Support CRPD Absolute Prohibition of Commitment and Forced Treatment CRPD Course Committee on the Rights of Persons with Disabilities Convention on the Rights of Persons with Disabilities