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Gothenburg Network Meeting Attendees

Below are biographical details for those attending the upcoming IIPDW network meeting, to be held in Gothenburg from September 27th to 29th. If you have queries, please email jmoore@madinamerica.com. Thank you.

Auður Axelsdóttir

Auður is an occupational therapist from Reykjavík, Iceland and director of Hugarafl (e. Mindpower). Auður founded Hugarafl in 2003 along with four individuals with lived experiences, with the aim of changing the way that the mental health system works in Iceland. Thanks to their hard work and unconventional ways in her work, Auður and Hugarafl have cleared the way for a new approach in the service to individuals with mental health problems. Hugarafl works on the principles of empowerment and recovery with the aim to influence the system with their experience, i.e. what works and what doesn’t in recovery.

Auður works with individuals, families and in group situations and uses PACE in her work. She is also passionate about improving rights and respect within the mental health system as well as in society. Auður and Hugarafl have been active in bringing in guest speakers and holding conferences. Daniel Fisher has visited the country several times to talk about PACE, empowerment and eCPR; Robert Whitaker has visited twice and Patch Adams has had two conferences with Hugarafl. These visits were important in implementing alternative means of treatment in the health sector. Auður’s husband Eiríkur has made a few documentaries explaining alternative approaches. In June 2017 Auður was awarded the presidential Knights Cross of Iceland for her contributions to mental health care in the country.

Jan Anders Borning

I am a psychiatrist who has for the last year worked at a drug free psychiatric inpatient unit at Akershus University Hospital in Norway. We offer our users a stay of eight weeks duration with a mixture of interventions, such as psychotherapy, physiotherapy, art therapy and a program called Illness Management and Recovery (IMR). The activities are done both individually and in groups. Our policy is not to introduce psychiatric drugs, but to help those of our users who wish to reduce or quit their drugs.

I have had several years of experience as a psychotherapist and with the use of psychopharmaca. In general I found the effects of psychopharmaca to be ineffective and often problematic. My interest therefore shifted even further towards non medicinal therapy. In my first years as a physician I worked with rheumatology and as a general practitioner. I caught an interest in chronic pain conditions and the often associated depression and anxiety. Also here I saw the dilemmas of medication overuse and a lack of systematic use of other treatments. I am certified as mindfulness instructor and as cognitive behavioural therapy (CBT) supervisor.

Would like to discuss

1. Research on withdrawal symptoms
2. Guidelines and research on tapering
3. Effective therapy for psychosis and bipolar disorder without the use of medication

Mette Ellingsdalen

Mette Ellingsdalen is a Norwegian human-right activist. Her work is focused on ending discrimination against people with psychosocial disabilities, and promoting basic rights, human dignity and the right to self-determination. Mette was first hospitalised at the age of 22. Over the next 13 years, she was prescribed over 25 different psychiatric drugs and was given multiple electroshocks. Her attempts to address the harmful effects of the treatments were met with indifference by a system that was more about power, not truth and knowledge. This is an important motivation for her advocacy work.

From 2007 to 2014 Mette was chair of the user/survivor organisation We Shall Overcome (WSO). In this role, she created a platform to amplify the voices of those mistreated and harmed by psychiatric treatment. She was one of the initiators to create the «Joint action for drug-free treatment», that led to the creation of drug-free treatment options in Norway.

Currently, she is employed part-time as political advisor for WSO, and is responsible for WSOs Human Rights work, advocating for the full implementation of the Convention for the Rights of people with Disabilities (CRPD).

Would like to discuss:

1. Ensuring that lived experience is seen as important as any ‘professional’ understanding of withdrawal.
2. The wider issues that are attached to withdrawal such as resistance against being labelled and defined as mentally ill and re-claiming ownership of our thoughts and feelings.
3. Understanding where we are with research into withdrawal.

Adele Framer

Adele resides in San Francisco, California, USA and is retired from information architecture & user experience design for software. She went off 10mg paroxetine in 2004 and it took 11 years to recover from the withdrawal syndrome. She has studied psychiatric drug withdrawal syndrome since 2004 and founded the website SurvivingAntidepressants.org in March 2011.

Surviving Antidepressants was designed to collect case histories. It has more than 12,000 registrations and receives more than 300,000 page views per month. It has 6,000 naturalistic longitudinal case histories by patients. It provides more than 60 tapering topics (“Tips for tapering [drug]”) and explanations of titration methods (e.g. gradual 10% per month hyperbolic tapering method self-guided by patient). The site content is widely shared on Facebook and other websites.

Would like to discuss:

1. Deprescribing of unnecessary psychiatric drugs as the conceptual framework (allies will be pharmacists, psychiatric nurses, nurse practitioners, physician assistants).
2. Addressing clinician inability to recognize withdrawal symptoms.
3. Produce general statement of tapering methodology (close monitoring, adjusting the taper).
4. Initiating research leading to more comprehensive evidence-based tapering protocol.
5. Addressing treatment of post-acute withdrawal syndrome (PAWS).

Fernando Freitas

Fernando Freitas PhD is Professor and Researcher at the National School of Public Health (ENSP / FIOCRUZ / RIO DE JANEIRO).

He is co-author of the book Medication in Psychiatry published by Editora Fiocruz. He also is co-editor of the website www.madinbrasil.org

Would like to discuss:

1. Safe and viable strategies for withdrawal of psychiatric drugs.

Peter C Gøtzsche

Professor and Director – Institute for Scientific Freedom, Copenhagen.

I was one of the founders of Council for Evidence-based Psychiatry, which recently convinced a UK parliamentary committee that the work on helping people with drug dependence should not be limited to opiates, etc. but should include depression pills. I co-founded the International Institute for Psychiatric Drug Withdrawal. One of my PhD students, psychologist Anders Sørensen, withdraws patients from psychiatric drugs, and we collaborate on a Cochrane review of studies of withdrawing depression pills. I provide information, tips and tricks about drug withdrawal on my homepage, which has a list of people willing to help; I have conducted seminars on withdrawal and I have published evidence-based books and many articles explaining why people should generally avoid psychiatric drugs.

Would like to discuss:

1. Research.
2. Deprescribing protocols.
3. Major initiatives including official ones for addressing the psychiatric drug epidemic.

Peter Groot

Peter Groot is a researcher and experiential expert connected with the User Research Center of Maastricht/Utrecht UMC. He studied chemistry and did molecular genetic (DNA) research at the Free University – where he got his PhD in 1989 – and the Netherlands Cancer Institute in Amsterdam and at the Faculties of Veterinary medicine and Pharmacology of University Utrecht.

A major depression put an early end to his molecular genetic career and led to using antidepressants. These experiences made him question the usefulness of the current psychiatric diagnostic system and he became aware of the problems patients were having when they wanted to come off medications, which ultimately led to the development of tapering medication in so-called tapering strips in 2013.

The availability of tapering strips makes it practically possible for caretakers to prescribe personalized tapering schedules on the basis of shared decision making, which helps patients to come off medications safely.

Would like to discuss:

1. Discussion of the development and (future) use of tapering medication.
2. The struggle to get tapering medication accepted by the medical community and regulators, and the difficulties getting costs reimbursed by health insurers. What lessons can be learned from this?

Swapnil Gupta

I received most of my foundational training in medicine and psychiatry in Pondicherry and Chandigarh in India. and completed a second residency and a psychopharmacology fellowship at SUNY Downstate and Yale. My interest in deprescribing comes from a critical clinical need for such an intervention in psychiatry, my experience of having worked in settings with limited access to medications and my strong inclination toward rational and parsimonious use of medications. I teach clinical interviewing and psychopharmacology to medical students and psychiatry residents. I also work as an outpatient psychiatrist at the Connecticut Mental Health Center in the US.

Would like to discuss:

1. Incorporating withdrawal protocols in all randomized controlled trials of medications – recommendations to the FDA.
2. Incorporation of deprescribing/withdrawal of psychotropics in training of psychiatrists across the world.
3. Developing a centralized database of narratives of withdrawal (that can be utilized by researchers to generate protocols).
4. Collaboration with other medical specialities and with quality control agencies to emphasize the need for deprescribing.

Anne Guy

Would like to discuss:

1. How are psychological therapists in other countries encouraged to work with issues of prescribed drug dependence?
2. What best practices might the UK learn from others in supporting people in withdrawal?
3. How far are other countries psychological therapy services enmeshed in a biomedical model of human distress and are there any existing movements to stem the tide?

Carina Håkansson

Founder of Family Care Foundation, Carina Håkansson was in charge of that organization until 2015 when she left to create The Extended Therapy Room Foundation. This was a continuation of her many years of collaborative work with those called clients, their families, family homes and professionals.

The main purpose of The Extended Therapy Room Foundation is to describe and develop, through social and therapeutic practice, a humanistic knowledge arising from both ordinary life knowledge and therapeutic understandings. In daily practice, the Extended Therapy Room aims to be an alternative to the psychiatric system. Carina is a co-founder of IIPDW.

Would like to discuss:

1. What does it take to support someone who wants to withdraw?
2. Creating a survey to examine: Do people know enough about the drugs they use?
3. Assuming that people are not fully informed about the medications they take for mental health issues, how do we change that?

Rex Haigh

I have worked as an NHS consultant psychiatrist in medical psychotherapy’ in several non-residential therapeutic communities in the UK since 1994, several of which I set up and led. They have been mostly for personality disorder – although we do not make a big thing about diagnosis: “you might need a PD diagnosis to get to our door, but you can leave it outside when you get here”. In the 1990s, we were able to insist that people stopped all medication before coming into the programme, and we had groups to help them do so.  This is not now possible, because the expectation of a right to psychiatric medication has become much stronger – from referrers, managers and commissioners, family and friends, and service users themselves. I see this as a slow but inexorable erosion of human rights to have a free and informed choice about taking psychiatric medication.

More recently, I have been the clinical advisor to the government’s programme for developing suitable services for personality disorder – and we are always trying to emphasise the importance of therapeutic relationships, rather than hospitalisation and medication. We are having some success, for example through the Royal College of Psychiatrists’ ‘Enabling Environments’quality assurance programme, particularly in English prisons.

Would like to discuss:

1. Social and psychotherapeutic alternatives to medication.
2. Including the role of nature-based therapies.
3. Inappropriate use of the ‘drug model’ in psychiatric research.
4. The definition of ‘evidence-based practice’ to exclude almost everything except RCTs.
5. Possible role of single or occasional doses of psychedelics as part of ‘psychedelic-assisted psychotherapy’.

Mark Horowitz

I am involved in the issue of psychiatric drug withdrawal as a patient, training psychiatrist and researcher. I learnt about the issue through my own difficult personal experience in trying to come off an antidepressant after many years of use. As a training psychiatrist who had not heard of this phenomenon during training this was eye-opening and has caused me to question a number of issues regarding psychotropic medication. I wrote a paper about pharmacological principles that might be helpful to patients trying to withdraw from SSRIs in The Lancet Psychiatry, and am working on further papers to help guide withdrawing from other psychotropic medications. I am currently working on the RADAR trial in London with Joanna Moncrieff looking at the effect of reducing and stopping antipsychotic medication in patients with a psychotic illness. I am interested in running a trial in slower tapering off patients off antidepressants with a view to improving guidance for doctors and patients. I think the issue of psychiatric drug withdrawal necessitates a re-examination of the role of psychotropic medication in practice, especially as it relates to the evidence base for prevention of relapse, likely confounded by antidepressant withdrawal being labelled as relapse.

Would like to discuss:

1. I would like to hear about the strategies people are pursuing to get attention to the issue of withdrawal effects from psychotropic medication.
2. I would like to discuss the need for better guidance on how patients can withdraw from these drugs from the medical community, relevant health bodies and the public.
3. I would also be interested to hear what initiatives exist already for helping patients to get off these medications in the UK and abroad, and how I might contribute to this. And to hear about any current or proposed research to evaluate differing withdrawal techniques.

Shimon Katz

I have been involved with IIPDW since its beginning. The second meeting we held inspired me to establish in my home country of Israel, an initiative that provides people who are interested in coming off medication information, support and guidance. I give private consulting, lead a group for coming off medication, and give lectures and workshops in Israel. Our initiative has been growing rapidly and has been getting a lot of exposure so far.

Would like to discuss:

1. I would like to hear about how we can create a stronger impact on psychiatrists and prescribers.

Peter Kinderman

Peter is Professor of Clinical Psychology at the University of Liverpool and former President of the British Psychological Society.

His research interests are in psychological processes underpinning wellbeing and mental health. He has published widely on the role of psychological factors as mediators between biological, social and circumstantial factors in mental health and wellbeing. His most recent book, ‘A Prescription for Psychiatry’, presents his vision for the future of mental health services. Peter argues that our mental health and wellbeing depend largely on the society in which we live, on the things happen to us, and on how we learn to make sense of and respond to those events. He proposes a reconceptualization of mental health problems; a rejection of invalid diagnostic labels, practical help rather than medication, and a recognition that distress is usually an understandable human response to life’s challenges. You can follow him on Twitter as @peterkinderman.

Would like to discuss:

1. How we can avoid medical prescription (and diagnosis) in the first place.
2. Media discussions about mental health and psychiatric drugs.
3. Alternatives to medication.

Peggy Lilleby

Peggy Lilleby has been working as a physician in psychiatry Norway since 2008. From 2015 she has been attending physician at the Center for Basal Exposure Therapy (BET) at Vestre Viken Hospital Foundation, working systematically with tapering drugs for patients receiving complex psychiatric medication but nevertheless having unremitting symptoms and a low global level of function. The Center for Basal Exposure Therapy offers intensive psychotherapeutic treatment primarily in an inpatient setting for patients having severe and complex treatment-resistant conditions.

Would like to discuss:

1. Experience my colleagues have made with tapering psychopharmacological medication, as there is little research done on this.
2. Patient involvement in designing a protocol for tapering medication.
3. Principles for deciding in what order different medications should be tapered.
4. How to assess the effect psychiatric medication has on the psychotherapeutic process

Marcello Macario

M.D. Psychiatrist, Chair of the Italian Hearing Voices Network. I started working in public mental health in 1987 and since then I’ve been always working in Community Mental Health Centers. I think that mental health is not (only) a medical problem but rather something related to what has happened in your life, and also that the most important things in the treatment process are an attitude towards “recovery” and the belief that everyone (including the “patient” and the family members) have something important to say much more than using the “right” techniques based on the “right” diagnosis.

For 20 years I’ve been involved in the International Hearing Voices Movement and I promoted the growth of the Hearing Voices Network in Italy where now there are more the 30 hv groups (and I’m facilitating one of this groups). Talking with many voice hearers I’ve begun to learn that psychiatric drugs are sometimes useful but very often with heavy side effects and that many times the dialogue between the doctor and the patient is not open and honest.

Would like to discuss:

1. Deprescribing protocols.
2. Involvement of the family and the social network in the drug withdrawal process.
3. Talking between doctors about drug withdrawal (how to create spaces for dialogue between the ones who are “pro” and the ones who are “against”).

Fanny Marell

Fanny Marell, MSc, Family Therapy, BSc, Social Work, is a social worker, licenced psychotherapist, teacher and supervisor in psychotherapy with a focus on family therapy. At present, Fanny is working in her own company providing supervision, psychotherapy and education.

Through her 20 years of experience as a social worker, psychotherapist, teacher and supervisor, Fanny has become deeply concerned with the increasing number of those receiving a psychiatric diagnosis and the increasing number of drug prescriptions. She does not believe in this way of understanding and resolving problems and wants to be part of an alternative approach.

Would like to discuss:

1. How can we join and collaborate to change/evolve the existing way of understanding psychiatric suffering?
2. How can we implement a diagnosis and drug-critical perspective as an alternative to predominant health care paradigm?
3. How can I work with this question in supervision?
4. The political aspects of this topic.

Lasse Mattila

Lasse Mattila has a Bachelor of Science in Social Work and over 20 years of experience working with vulnerable children and adolescents. Lasse is the publisher/editor-in-chief of Mad in Sweden and chairman of Föreningen Alternativ till Psykofarma (The Association Alternatives to Psychotropics) in Sweden.

Would like to discuss:

1. Recommendations concerning withdrawal.
2. Alternatives to psychiatric drugs (alternative treatments etc.) andresearch.
3. Building of national/international network of people working with withdrawal (people with lived experience, prescribers, practitioners, others); etc.

Tore Ødegård

I am working as a mental health nurse at the Medication Free Unit in the psychiatric hospital in Tromsø, Norway. I am concerned about the challenges and struggle both coming off psychotropic drugs (especially neuroleptics and so-called mood stabilizers). I am interested and involved in how to support people in making good and safe plans coming off psychotropic drugs.

Would like to discuss:

1. How we can organize our support systems to help people to solve their mental problems without getting on these drugs.
2. How families, social networks and local mental health services can give sufficient support, and how we can empower their network in this.

John Read

I am a Professor of Clinical Psychology at the University of East London. I worked for nearly 20 years as a Clinical Psychologist and manager of mental health services in the UK and the USA, before joining the University of Auckland, New Zealand, in 1994, where I worked until 2013.

I am an IIPDW Board Member as well as the Boards of the Hearing Voices Network – England, and the UK branch of the International Society for Psychological and Social Approaches to Psychosis. I am the Editor of the ISPS’s scientific journal ‘Psychosis’.

I have published over 140 papers in research journals, primarily on the relationship between adverse life events and psychosis. Most recently I have conducted several large-scale surveys of the experiences of recipients of anti-psychotic and anti-depressant medication, including documenting the high prevalence of severe, long-lasting withdrawal effects.

I am currently working with the UK’s All Party Parliamentary Group for Prescribed Drug Dependence in their efforts to change guidelines and practice around antidepressant, benzodiazepines and opiates. I am the British Psychological Society’s representative on the Expert Advisory Group to Public Health England’s current review of dependence on prescribed drugs.

Would like to discuss:

1. The role, and funding, of the IIPDW in future.
2. Exposing drug company influence.

Sandra Steingard

Sandra Steingard, M.D. is Chief Medical Officer of Howard Center, a community mental health center in Vermont, USA, Clinical Associate Professor of Psychiatry at the University Of Vermont Larner College of Medicine, chair of the board of the Foundation for Excellence in Mental Health Care, and a member of the board of Mad In America Continuing Education. She is the editor of Critical Psychiatry: Controversies and Clinical Implications.

She has a long interest in trying to minimizing the use of psychiatric drugs. Her interest in drug tapering derives from these observations: many people are started on drugs that they may not need or on doses that are higher than necessary, drugs that may be of benefit in the short-term may be deleterious after protracted exposure. She has published the results of experiences in tapering neuroleptic drugs with patients in her clinic. She blogs at Mad In America.

Would like to discuss:

1. Protocols for safe tapering.
2. Understanding what other kinds of supports might support a person during a drug taper.
3. How to effectively educate others about this issue

Giuseppe Tibaldi

I am a psychiatrist, who is responsible for the community (inpatient and outpatient) services for an area of ​​150,000 inhabitants, in the province of Modena, after working – 25 years – in the Turin area (as head of a community mental health center).

From 2015 to 2017 I participated in the three-year OD training in London and I was included, there, in the group of trainers and supervisors. My main training, before the Open Dialogue, was that of psychotherapy of psychosis (ISPS orientation). In the last 15 years I promoted the writing and publication of many recovery stories in Italy.I’m collaborating with the Italian Voice Hearers’ Network, too.

I also promoted the translation into Italian of Robert Whitaker’s “Anatomy of an Epidemic” and Peter Gøtzsche’s “Deadly Medicines and Organized Crime”. Both authors were invited in Italy for presentations and conferences to different audiences.

I’m currently involved in many initiatives about drug reduction and withdrawal. The main one, currently, is going to involve most of the psychiatrists working in all Mental Health Departments of my Region (Emilia Romagna): these meetings are aimed at offering the opportunity to include drug reduction strategies within the framework of the Italian Law about Advance Directives (enacted in January 2018). The main issue, raised by most of my colleagues, is the “relapse” during withdrawal, with the potential legal and judicial consequences (for them) of this kind of relapse. The Advance Directives framework, as a shared, dialogical, process, could be a good “tranquilizer”.

I am 63 years old; divorced, with two sons, Edoardo (26) and Davide (23). My partner, Roberta, is a social worker. My name is Giuseppe, but all my friends call me Beppe.

Sami Timimi

I am a practising psychiatrist, becoming part-time in my NHS role from September. I would like to look into setting up a private practice or perhaps an affiliated organisation (to IIPDW) to pursue both teaching (to GPs in particular) and helping individuals withdraw from psychiatric meds.

Would like to discuss:

1. De-prescribing protocols, manufacture of low dose capsules/tablets.
2. Ideas on the education of public and doctors.

Gadi Tirosh

Gadi is a high-tech entrepreneur and investor and been involved in the Israeli high-tech industry in the last 25 years. Since 2016 Gadi and his wife Ruth are involved in Mental Health recovery initiatives in Israel. As such they have translated and published Robert Whitaker’s book, Anatomy of Epidemic, in Hebrew and invited Robert for a series of talks and conferences in Israel. Gadi is on the board of directors of Soteria Israel that runs 3 Soteria houses and helped dozens of people to avoid psychiatric hospitalization. Gadi is also part of the “Responsible Withdrawal” initiative that provides reliable data, in Hebrew, to people who are interested in withdrawing from psychiatric drugs. The initiative also launched several support groups around the country and provide personal support through a withdrawal process. As part of launching the initiative, we hosted Will Hall for a series of talks and workshops with Israel’s leading mental health organizations.

Would like to discuss:

1. Aspects of launching a psychiatric drug withdrawal initiative: people, partners, funding, tracking over time.

Birgit Valla

As a child and family psychologist, I have seen what drugs can do to very young children. This was the starting point of my interest; how we treat children. The second is the very poor results we get within the field of mental health, and how the drugs contribute to that, both for children and adults. At the beginning of my career, I worked within the hospital system and I was convinced that there had to be a better way. For the past ten years I have found that better way. My vision was to build a better mental health service based on what truly mattered to people and what made desirable outcomes. My work has consisted mostly of finding better ways to help people than with drugs and diagnoses, and I and my colleagues have succeeded in building a service that does that. I am mostly interested in finding other ways to support people’s growth. I have written a book about this ‘Beyond best practice – How mental health services can be better’ In the past years I also have become increasingly interested in nutrition and physical activity and its impact on our health (both physically and mentally), and a whole person approach to well-being.

Would like to discuss:

1. How we can support people in alternative ways.
2. Nutrition – stress – activity – whole person approach – what role does it play in drug withdrawal.
3. Spreading the word about the harms of psychiatric drugs (both getting on and off) to everyday people.

Scott Waterman

G. Scott Waterman, M.D., M.A. is Professor of Psychiatry Emeritus at the University of Vermont College of Medicine in the USA, where he also served at various times as Director of Psychopharmacology, Director of Medical Student Education in Psychiatry, and Associate Dean for Students.

He began his career with research interests in the neurobiological foundations of childhood-onset mental illness but eventually shifted his academic focus to the philosophy of psychiatry – specifically, the conceptual problems and fallacies inherent in medical/psychiatric education and practice related to diagnostic classification, drug treatment, and related matters. He is a member of the executive council of the Association for the Advancement of Philosophy and Psychiatry and teaches courses in philosophy of psychiatry.

Would like to discuss:

1. Findings, to date, regarding the benefits and harms of long-term drug treatments.
2. Ways of discussing with patients and family members the potential pros and cons of drug continuation/discontinuation.
3. Ways of incorporating information and thinking about drug discontinuation into medical education and training.

Robert Whitaker

Robert Whitaker is president of Mad in America Foundation, which publishes the Mad in America webzine, and a co-founder of the International Institute for Psychiatric Drug Withdrawal.

Would like to discuss:

1. What withdrawal related research needs to be done.
2. Development of withdrawal protocols.
3. Outreach to media.