The Paranoia Network, founded in November 2003, is a self-help user-run organisation in Sheffield, England, for people who have paranoid or delusional beliefs.
In contrast to mainstream psychiatry, that tends to see such beliefs as signs of psychopathology, the Paranoia Network promotes a philosophy of living with unusual and compelling beliefs, without necessarily pathologising them as signs of mental illness. It was partly inspired by the Hearing Voices Network’s approach to auditory hallucinations.
What would otherwise seem to be a relatively minor disagreement over theory is complicated by the fact that people diagnosed as delusional can often be detained under mental health law and treated without their consent. Therefore, many of the criticisms of the diagnosis or definition have important ethical and political implications, which often leads to heated public debate.
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Hearing Voices Networks, closely related to the Hearing Voices Movement, are peer-focused national organisations for people who hear voices (commonly referred in western culture as auditory hallucinations) and supporting family members, activists and mental health practitioners. Members may or may not have a psychiatric diagnosis.
Networks promote an alternative approach, where voices are not necessarily seen as signs of mental illness. Networks regard hearing voices as a meaningful and understandable, although unusual, human variation. In themselves voices are not seen as the problem. Rather it is the relationship the person has with their voices that is regarded as the main issue.
Twenty-nine national Hearing Voices Networks have been established worldwide. There are also regional networks in Australia (Western Australia, Victoria, Tasmania and southwest Australia), Quebec, UK (Greater London, southwest England) and the United States. The National and Regional Networks are affiliated to the international umbrella organisation known as INTERVOICE (The International Network for Training Education and Research into Hearing Voices) and often referred to as the Hearing Voices Movement. Within these international networks, the combined experience of voice-hearers and professionals have overseen the development of ways of working with people who hear voices that draw on the value of peer support and which help people to live peacefully and positively with their experiences.
The principal roles of Hearing Voices Networks are as follows:
To support and develop local Hearing Voices Support Groups.
Raise awareness of the hearing voices approach.
To campaign for human rights and social justice for people who hear voices.
To provide information, advice and support to people who hear voices, their family, friends.
To provide training and education for mental health services and practitioners.
Description and Philosophy
The first hearing voices network was founded in the Netherlands in 1987 by the Dutch psychiatrist Marius Romme, the science journalist, Sandra Escher and voice hearer, Patsy Hage. This was followed by the founding of the UK network in 1988 based in Manchester, England. Subsequently Networks have been established in 29 countries over the world, including Australia (2005), Austria, Belgium, Bosnia, Canada, Denmark (2005), England (1988), Finland (1996), France (2011), Hungary (2013), Germany (1998), Greece, Ireland (2005), Italy, Japan, Kenya, Palestine, Malaysia, New Zealand (2007), Netherlands (1987), Norway, Northern Ireland, Scotland, Sweden, Switzerland, Tanzania, Uganda, USA (2010) and Wales (2001). The first 15 years of the development of the global networks is outlined by Adam James in his book Raising Our Voices (2001).
These networks provide support to voice hearers specifically through the establishment of local hearing voices support groups, where people who hear voices are afforded the opportunity in a non-medical setting to share their experiences, coping mechanisms and explanatory frameworks. These groups are run in different ways and some are exclusive to individuals who hear voices, whilst others are supported by mental health workers.
National networks have developed considerably over the years and host websites, publish newsletters, guides to the voice hearing experience and workbooks where individuals can record and explore their own experiences with voice hearing.
Dutch psychiatrist Marius Romme, the co-author of Accepting Voices, has provided an intellectual basis for these group. He advocates a view that the hearing of voices is not necessarily an indication of mental illness, and that patients should be encouraged to explore their voices and negotiate with them.
Hearing Voices Groups
The development of peer support groups for voice-hearers, known as “hearing voices groups” (HVGs), are an essential part of the work of Hearing Voices Networks throughout the world. For instance there are over 180 groups in England, 60 in Australia and growing numbers of groups in the USA. The groups are based in a range of settings including community centres, libraries, pubs, churches, child and adolescent mental health services, prisons and inpatient units.
Hearing Voices Groups are based on an ethos of self-help, mutual respect and empathy. They provide a safe space for people to share their experiences and support one another. They are peer support groups, involving social support and belonging, not therapy or treatment. Hearing Voices Groups are intended to help people to understand and come to terms with their voices and begin to recover their lives.
Members are encouraged to talk about their experiences, to learn what the voices mean for them and how to gain control over their experiences. In voices groups, people are enabled to choose the way they want to manage their experiences. Voices groups assist people to access information and resources so they can make their own choices. Furthermore, voices groups allow people to explore the relationship between their life history and their experience of hearing voices, should they want to do so.
Studies have found that after attending hearing voices groups, members’ hospital bed use decreased. There was also a trend for less formal admissions. People used far more coping strategies and were able to talk to far more people about their voices after attending groups. Learning coping strategies was something people valued about groups and one of the common topics was to explore and experiment with different coping strategies. After attending groups, self-esteem increased. User empowerment also increased. Feeling more empowered is one of the aims of groups particularly valued by voice hearers and may be associated, not only with the voices themselves, but also with other aspects of recovery and getting better. People’s relationships with the voices were mostly improved. They heard the voices less frequently. The voices were perceived as less powerful (omnipotent) relative to them. People felt much better able to cope with their voices, and there were trends towards people feeling less controlled by their voices and feeling less alone. Perhaps most importantly, evaluations show that people improved in relation to what they had identified as their own goals for the group.
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The Hearing Voices Movement (HVM) is the name used by organisations and individuals advocating the “hearing voices approach”, an alternative way of understanding the experience of those people who “hear voices”.
In the medical professional literature, ‘voices’ are most often referred to as auditory verbal hallucinations. The movement uses the term ‘hearing voices’, which it feels is a more accurate and ‘user-friendly’ term.
The movement was instigated by Marius Romme, Sandra Escher and Patsy Hage in 1987. It challenges the notion that to hear voices is necessarily a characteristic of mental illness. Instead it regards hearing voices as a meaningful and understandable, although unusual, human variation. It therefore rejects the stigma and pathologisation of hearing voices and advocates human rights, social justice and support for people who hear voices that is empowering and recovery focused. The movement thus challenges the medical model of mental illness, specifically the validity of the schizophrenia construct.
The international Hearing Voices Movement is a prominent mental health service-user/survivor movement that promotes the needs and perspectives of experts by experience in the phenomenon of hearing voices (auditory verbal hallucinations). The main tenet of the Hearing Voices Movement is the notion that hearing voices is a meaningful human experience.
The Hearing Voices Movement regards itself and is regarded by others as being a post-psychiatric organisation. It positions itself outside of the mental health world in recognition that voices are an aspect of human difference, rather than a mental health problem. One of the main issues of concern for the Hearing Voices Movement is empowerment and human rights as outlined in its Melbourne Hearing Voices Declaration 2013 and Thessaloniki Declaration 2014.
The Hearing Voices Movement also seeks holistic health solutions to problematic and overwhelming voices that cause mental distress. Based on their research, the movement espouses that many people successfully live with their voices. In themselves voices are not seen as the problem. Rather it is the relationship the person has with their voices that is regarded as the main issue. Research indicates that mindfulness-based interventions can be beneficial for people distressed by hearing voices.
The Hearing Voices Movement has developed interventions for mental health practitioners to support people who hear voices and are overwhelmed by the experience.
The position of the hearing voices movement can be summarised as follows:
Hearing voices is not in itself a sign of mental illness.
Hearing voices is part of the diversity of being a human, it is a faculty that is common (3-10% of the population will hear a voice or voices in their lifetime) and significant.
Hearing voices is experienced by many people who do not have symptoms that would lead to diagnosis of mental illness.
Hearing voices is often related to problems in life history.
If hearing voices causes distress, the person who hears the voices can learn strategies to cope with the experience.
Coping is often achieved by confronting the past problems that lie behind the experience.
The work of Marius Romme, Sandra Escher and other researchers provides a theoretical framework for the movement. They find that:
Not everyone who hears voices becomes a patient. Over a third of 400 voice hearers in the Netherlands they studied had not had any contact with psychiatric services. These people either described themselves as being able to cope with their voices and/or described their voices as life enhancing.
Demographic (epidemiological) research carried out over the last 120 years provides evidence that there are people who hear voices in the general population (2%-6%) who are not necessarily troubled by them). Only a small minority fulfil the criteria for a psychiatric diagnosis and, of those, only a few seek psychiatric aid indicating that hearing voices in itself is not necessarily a symptom of an illness. Even more (about 8%) have peculiar delusions and do so without being ill.
People who cope well with their voices and those who did not, show clear differences in terms of the nature of the relationship they had with their voices.
People who live well with their voice experience use different strategies to manage their voices than those voice hearers who are overwhelmed by them.
70% of voice hearers reported that their voices had begun after a severe traumatic or intensely emotional event such as an accident, divorce or bereavement, sexual or physical abuse, love affairs, or pregnancy. Romme and colleagues found that the onset of voice hearing amongst a patient group was preceded by either a traumatic event or an event that activated the memory of an earlier trauma.
Specifically, there is a high correlation between voice hearing and abuse. These findings are being substantiated further in on-going studies with voice hearing amongst children.
Some people who hear voices have a deep need to construct a personal understanding for their experiences and to talk to others about it without being designated as mad.
Romme, colleagues and other researchers find that people who hear voices can be helped using methods such as voice dialoguing cognitive behaviour therapy (CBT) and self-help methods.
Romme theorises a three phase model of recovery:
Initial confusion; emotional chaos, fear, helplessness and psychological turmoil.
The need to find meaning, arrive at some understanding and acceptance. The development of ways of coping and accommodating voices in everyday living. This task may take months or years and is marked by the attempt to enter into active negotiation with the voice(s).
The establishment of equilibrium, and accommodation, with the voice(s), and the consequent re-empowerment of the person.
Alternative to Medical Model of Disability
The Hearing Voices Movement disavows the medical model of disability and disapproves of the practises of mental health services through much of the Western world, such as treatment solely with medication. For example, some service users have reported negative experiences of mental health services because they are discouraged from talking about their voices as these are seen solely as symptoms of psychiatric illness. Slade and Bentall conclude that the failure to attend to hallucinatory experiences and/or have the opportunity for dialogue about them is likely to have the effect of helping to maintain them.
In Voices of Reason, Voices of Insanity, Leudar and Thomas review nearly 3,000 years of voice-hearing history. They argue that the Western World has moved the experience of hearing voices from a socially valued context to a pathologised and denigrated one. Foucault has argued that this process can generally arise when a minority perspective is at odds with dominant social norms and beliefs.
The Hearing Voices Movement was established in 1987 by Romme and Escher, both from the Netherlands, with the formation of Stichting Weerklank (Foundation Resonance), a peer led support organisation for people who hear voices. In 1988, the Hearing Voices Network was established in England with the active support of Romme. Since then, networks have been established in 35 countries.
INTERVOICE (The International Network for Training, Education and Research into Hearing Voices) is the organisation that provides coordination and support to the Hearing Voices Movement. It is supported by people who hear voices, relatives, friends and mental health professionals including therapists, social workers, nurses, psychiatrists and psychologists.
INTERVOICE was formed in 1997, at a meeting of voice hearers, family members and mental health workers was held in Maastricht, Netherlands to consider how to organise internationally further research and work about the subject of voice hearing. The meeting decided to create a formal organisational structure to provide administrative and coordinating support to the wide variety of initiatives in the different involved countries.
The organisation is structured as a network and was incorporated in 2007 as a non-profit company and charity under UK law. It operates under the name of International Hearing Voices Projects Ltd. The president is Marius Romme and the governing body is made up of people who hear voices and mental health practitioners.
Hearing Voices Groups
Hearing Voices Groups are based on an ethos of self-help, mutual respect and empathy. They provide a safe space for people to share their experiences and to support one another. They are peer support groups, involving social support and belonging, not necessarily therapy or treatment. Groups offer an opportunity for people to accept and live with their experiences in a way that helps them regain some power over their lives. There are hundreds of hearing voices groups and networks across the world. In 2014 there were more than 180 groups in the UK. These include groups for young people, people in prison, women and people from Black and Minority Ethnic communities.
World Hearing Voices Congress
INTERVOICE hosts the annual World Hearing Voices Congress. In 2015 the 7th Congress was held in Madrid, Spain, the 2016 Congress will be held in Paris, France. Previous conferences have been held in Maastricht, Netherlands, (2009); Nottingham, England (2010), Savona, Italy (2011), Cardiff, Wales (2012); Melbourne, Australia (2013); Thessaloniki, Greece (2014); Madrid, Spain (2015).
Annual World Hearing Voices Day
This is held on 14 September and celebrates hearing voices as part of the diversity of human experience, It seeks to increase awareness of the fact that you can hear voices and be healthy. It also challenges the negative attitudes towards people who hear voices and the assumption that hearing voices, in itself, is a sign of mental illness.
Website and Social Media Platforms
INTERVOICE maintains several forums on Twitter, Facebook and other social media platforms.
INTERVOICE has an international research committee, that commissions research, encourages and supports exchanges and visits between member countries, the translation and publication of books and other literature on the subject of hearing voices and other related extraordinary experiences.
Appearances in Media
Hearing Voices, Horizon Documentary, BBC, UK (1995).
Angels and Demons directed by Sonya Pemberton, f2003; produced by ABC Commercial, in Enough Rope, Episode 162.
The Doctor Who Hears Voices, Channel 4, UK.
The voices in my head TED2013, Filmed February 2013.
Hearing Voices Network Cymru (Wales) maintains a media archive of articles and news items about hearing voices for the last seven years.
A study investigating media reports of the experience of hearing voices found that 84% of the articles in the study contained no suggestion that voice-hearing can be ‘normal’. Half of those that did, put voice-hearing in a religious or spiritual context, for example considering the case of Joan of Arc. Most of the articles (81.8%) connected voice-hearing to mental illness. In some cases, auditory verbal hallucinations were simply equated with insanity.
Criticism of the Hearing Voices Movement
The Hearing Voices Movement has been criticised for its stance on medication and schizophrenia and for promoting non-medical and non-evidence-based approaches to severe mental illnesses in articles by Susan Inman from the Huffington Post, such as “People Who Hear Voices Need Science-Based Advice” in 2013, and “What You’re not Hearing About the Hearing Voices Movement” in 2015.
Specific criticisms of the hearing voices approach include:
Using ideas that do not support science-based ways of understanding illness.
Undermines people’s trust in medical help that might be crucial to their wellbeing.
Encourages people to focus on their voices when they may be having a hard time differentiating between what is real and what is not real.
Does not recognise the very different needs of people with severe mental illnesses.
By failing to differentiate between the needs of people who actually have psychotic disorders and those who do not, HVM poses serious risks.
Poses real danger for the substantial number of people who lack insight into their psychotic disorder.
People struggling with psychotic symptoms should not be advised to emphasize the meaning of auditory hallucinations.