Excellent article on several people’s experiences with voice-hearing was published by Australia News this week. You can read the full article here.

“one important element of the hearing voices approach is ‘voice dialogue’ — trying to change your relationship with the voices. “It’s like being in a bad relationship, You have two options, put up with it and distract yourself with an affair, or work on the relationship. If you realise you can do something, you’re not a victim of a broken brain, as many have been told. If meaning is given to you by someone else, you stop looking to make your own sense of things.

 

 

 

Australia’s ABC Radio has a new 2-part podcast on voices and visions! Here’s what they say:

“The phenomenon of hearing voices might not be as unusual as we think, and many people even live quite happily with the voices they hear. Sometimes the voices have helpful advice and at other times they offer a type of command. So where do these voices come from and did some of the world’s faiths begin with hearing voices? Is it a mental illness or other worldly communication, dictating a destiny?”

Debra Lampshire:  Voice Hearer, Educator, & Researcher is coming to NYC for two workshops

Debra Lampshire has transferred her 30 years of the lived experience of recovery, voice hearing and the shared experiences of the consumers she has worked with into a wealth of knowledge that is collaborative, interactive and empowering. She is a prominent leader and mentor to others within the service-user and clinical movement in New Zealand and a well know trainer, educator and advocate within national and international mental health services. She is the current Chairperson for ISPS New Zealand and held the position of Consumer Consultant to Auckland District Health Board (ADHB) for five years. She is currently a Project Manager for ADHB’s Psychological Interventions for Enduring Mental Illness Project. In this unique and innovative position, Debra works in a clinical setting, leading the development of psychological strategies for positive symptoms of psychosis, and is the first non-clinician to do so. Debra is also a professional teaching fellow with The University of Auckland’s Centre for Mental Health Research and Policy Development, where she holds both an academic and research role. Her work has been presented as keynotes and workshops/symposia at numerous conferences both nationally and internationally.

(1) ISPS-US is sponsoring a full day workshop at the A.R.E. Center in midtown Manhattan on Tuesday September 29th from 10 am to 4 pm. Cost $25 to $100, see registration for details.

http://tinyurl.com/oxdu67y

In this workshop, Ms. Lampshire will use her own experience, discuss her research, and engage with participants in experiential exercises with participants. The following topics will be addressed:

 

1. What does it mean for a voice hearer to be in recovery?
2. What is the role of empowerment in this recovery?
3. What do mental health professionals need to learn from voice-hearers?
4. What are the implications of the Hearing Voices Network paragdigm for the mental health system?

This workshop is appropriate for voice-hearers and their families/allies, students, peers, advocates and mental health professionals.

(2) FREE Hearing Voices NYC event, Friday evening September 25 from 6 pm to 8 pm.

TAKING BACK YOUR LIFE: Stand Up & Start Up!

In this talk Debra Lampshire, who spent decades institutionalized and who now gives lectures to mental health professionals regarding recovery, will discuss how she  overcomes the  fear of asserting herself, how to  feel confident and capable regarding  starting & leading  groups. For those who are feeling anxious, uncertain or who fear stepping up to the plate to start an HVN or other group, this meeting will be sure to inspire. This meeting is free to all.

Location: Jefferson Market Library

425 Avenue of the Americas (6th Ave) between 9-10th Streets

New York , NY 10011

Take A, B, C, D, E, F to West 4th Street or 1, 2, 3 to 14th St, F to 14th, L to 6th Ave, 4, 5 to 14 th St-Union Square or 6 to Astor Place

NO NEED TO REGISTER. JUST SHOW UP!!

The Bay Area Hearing Voices Board wrote the following letter in response to a Huffington Press post criticizing the HVN by Canadian parent advocate Susan Inman.  Multiple organizations and individuals have signed on, including Hearing Voices Network NYC. If you want to sign it too, contact the Bay Area HVN group here.
……………………………………………………….

Dear Editors,

We write to express our concern and misgivings about Susan Inman’s recent post (“What You’re Not Hearing About the Hearing Voices Movement”). Ms. Inman has profoundly mischaracterized hearing voices networks (HVNs) and also demonstrates a troubling lack of understanding of the empirical literature on psychosis, optimal psychosocial intervention and recovery.

We–the Bay Area Hearing Voices Network (BAHVN)–are a regional HVN that includes peers, family members, clinicians, and researchers.  Many of the peers who attend our groups (and the loved ones of affiliated family members) take–and benefit from–antipsychotic medications. Many of us have also struggled (personally or within our families) with very “severe” and disabling forms of psychosis and are no strangers to the enormous challenges involved.  Instead it is precisely in response to the enormity of these challenges that we undertake the work we do.  Our goal is not to challenge psychiatry, but rather to create spaces in which dialogue is possible, and in which the personal meaning of psychotic experiences (and their social and cultural contexts) are centered.

There is no sense in which the mission of our group (or any regional or national HVN, to our knowledge) is to discourage medication use; instead we emphatically stress the highly individual nature of voices and psychosis and the importance of both peers and family members exploring what works for them.  Medications are only one possible aid in an evidence-based and evidence-informed toolbox that includes peer support, psychosocial rehabilitation, community reintegration and an array of therapies (including mindfulness and compassion-focused therapy for voices; Thomas et al., 2014). An open access special issue of Schizophrenia Bulletin (the leading schizophrenia research journal) published last year, covers many of these issues including a review of psychosocial approaches to auditory hallucinations, a paper on distinct voice sub-types, auditory hallucinations in both with and without a need for care and a peer-reviewed overview of the hearing voices network approach.

Turning to the scientific literature more broadly, Ms. Inman’s post appears largely ignorant of research on voices and psychosis over the past two decades.  Socioenvironmental causes and contributories are well-documented, including childhood sexual trauma and bereavement (Bebbington et al., 2011; Bentall & Fernyhough, 2008; Kirkbride et al., 2014; Matheson et al., 2013; Varese et al., 2012).  Leading biomedical researchers have repeatedly underscored that “schizophrenia” is a misleading term implies a false unity of multiple, etiologically distinct, “psychoses” (Keshavan et al., 2013). Voices (or auditory verbal hallucinations) are found at high rates across diagnoses, including major depression, PTSD and DID.  Estimates of voice hearing  in the healthy (non-clinical) general population range from 5-15% (Beavan et al., 2013).  In reviewing Marius Romme’s research, Ms. Inman decontextualizes a body of work that has largely focused on the range of voices (or auditory hallucinations) occurring outside the schizophrenia spectrum and within healthy populations, at present a large and active area of research for many scientists and epidemiologists (see the work of the International Consortium on Hallucination Research).

Clinical researchers and stigma experts have amply demonstrated that “biomedical” explanations of schizophrenia increase (rather than alleviate) stigma, for instance exacerbating the general public’s belief that people with schizophrenia are “dangerous” and decreasing the hope and self-esteem of peers (Angermeyer et al., 2013, 2014; Kvaale et al., 2013ab; Schomerus et al., 2012).  A recent study suggests that individuals who endorse a biomedical view of their experiences are also significantly less likely to benefit from cognitive behavioral therapy, currently the front-line evidence-based therapy for psychosis in Canada, the US and the UK (Freeman et al., 2013).

Research attesting to the importance of engaging with and integrating the symptoms and experiences of psychosis with one’s identity and sense of self (“integrating” versus “sealing off”) goes back to the 1970s and has continued up to the present (McGlashan et al., 1975; Thompson et al, 2003; de Jager et al., 2015).  Decades of work on factors involved in recovery attest to the importance of peer relationships, sense of belonging, and the active exploration of the impact of one’s symptoms on one’s life (e.g. Sells et al., 2003; Davidson et al., 2008).

Finally, Ms Inman’s use of “evidence based practices” concerns us.  The “evidence base” is constantly evolving and new interventions (that do not yet have evidence behind them) are continuously piloted and evaluated.  Current treatments fail many.  Antipsychotic medications are only partially effective or ineffective for a large percentage of persons diagnosed with schizophrenia (this is not a controversial claim); likewise the long-term impact of evidence-based strategies such as early intervention for psychosis remain inadequate. Ten year follow-up data for the important OPUS trial of early intervention, for example, found no difference between participants and controls provided treatment as usual in employment, education, or marital status after ten years; the vast majority of individuals across groups were unemployed and struggling; Secher et al., 2014).  Even “good responders” to medications all too often do not recovery socially–i.e. in the sense of employment or community integration–without psychosocial supports and social intervention (Morgan et al., 2014).

As any scientist would agree–and certainly those of us intimately affected by psychosis–we must continually innovate, test new strategies and interventions and provide hope and support to both peers and family members.

We encourage Ms Inman (and everyone) to join us in respectful dialogue, and to critically and objectively read and engage with lived experience, clinical experience and the research literature.

The Board of the Bay Area Hearing Voices Network

Co-signatories:
Dirk Corstens MD on behalf of the InterVoice Board
Ron Coleman & Karen Taylor, Working to Recovery
Hearing Voices Network–New York City
Chicago Hearing Voices
NAMI Pennsylvania Montgomery County
Dr. Cherise Rosen, Department of Psychiatry, University of Illinois at Chicago
Dr. Sarah Keedy, Department of Psychiatry, University of Chicago
Dr. Neil Thomas, Senior Lecturer in Psychology, Swinburne University & Director, 
Voices Clinic at Monash Alfred Psychiatry Research Centre

References
Angermeyer, M. C., Daubmann, A., Wegscheider, K., Mnich, E., & Schomerus, G. (2014). The relationship         between biogenetic attributions and desire for social distance from persons with schizophrenia and major depression revisited. Epidemiology and Psychiatric Sciences, 1-7.

Bebbington, P., Jonas, S., Kuipers, E., King, M., Cooper, C., Brugha, T., … & Jenkins, R. (2011). Childhood sexual abuse and psychosis: data from a cross-sectional national psychiatric survey in England. The British Journal of Psychiatry, 199(1), 29-37.

Bentall, R. P., & Fernyhough, C. (2008). Social predictors of psychotic experiences: specificity and psychological mechanisms. Schizophrenia Bulletin, 34(6), 1012-1020.

Corstens, D., Longden, E., McCarthy-Jones, S., Waddingham, R., & Thomas, N. (2014). Emerging perspectives from the Hearing Voices Movement: implications for research and practice. Schizophrenia Bulletin, 40(Suppl 4), S285-S294.

Davidson, L., Schmutte, T., Dinzeo, T., & Andres-Hyman, R. (2008). Remission and recovery in schizophrenia: practitioner and patient perspectives. Schizophrenia Bulletin, 34(1), 5-8.

de Jager, A., Rhodes, P., Beavan, V., Holmes, D., McCabe, K., Thomas, N., … & Hayward, M. (2015). Investigating the Lived Experience of Recovery in People Who Hear Voices. Qualitative Health Research, 1049732315581602.

Freeman, D., Dunn, G., Garety, P., Weinman, J., Kuipers, E., Fowler, D., … & Bebbington, P. (2013). Patients’ beliefs about the causes, persistence and control of psychotic experiences predict take-up of effective cognitive behaviour therapy for psychosis. Psychological Medicine, 43(02), 269-277.

Keshavan, M. S., Clementz, B. A., Pearlson, G. D., Sweeney, J. A., & Tamminga, C. A. (2013). Reimagining psychoses: an agnostic approach to diagnosis. Schizophrenia Research, 146(1), 10-16.

Kirkbride, J. B., Jones, P. B., Ullrich, S., & Coid, J. W. (2012). Social deprivation, inequality, and the neighborhood-level incidence of psychotic syndromes in East London. Schizophrenia Bulletin, sbs151.

Kvaale, E. P., Gottdiener, W. H., & Haslam, N. (2013). Biogenetic explanations and stigma: A meta-analytic review of associations among laypeople. Social Science & Medicine, 96, 95-103.

Kvaale, E. P., Haslam, N., & Gottdiener, W. H. (2013). The ‘side effects’ of medicalization: A meta-analytic review of how biogenetic explanations affect stigma. Clinical Psychology Review, 33(6), 782-794.

Matheson, S. L., Shepherd, A. M., Pinchbeck, R. M., Laurens, K. R., & Carr, V. J. (2013). Childhood adversity in schizophrenia: a systematic meta-analysis. Psychological Medicine, 43(02), 225-238.

McCarthy-Jones, S., Thomas, N., Strauss, C., Dodgson, G., Jones, N., Woods, A., … & Sommer, I. (2014). Better than mermaids and stray dogs? Subtyping auditory verbal hallucinations and its implications for research and practice. Schizophrenia Bulletin., 40(Suppl 4), S275-S284.

McGlashan, T. H., Levy, S. T., & Carpenter, W. T. (1975). Integration and sealing over: clinically distinct recovery styles from schizophrenia. Archives of General Psychiatry, 32(10), 1269-1272.

Morgan, C., Lappin, J., Heslin, M., Donoghue, K., Lomas, B., Reininghaus, U., … & Dazzan, P. (2014). Reappraising the long-term course and outcome of psychotic disorders: the AESOP-10 study. Psychological Medicine, 44(13), 2713-2726.

Schomerus, G., Schwahn, C., Holzinger, A., Corrigan, P. W., Grabe, H. J., Carta, M. G., & Angermeyer, M. C. (2012). Evolution of public attitudes about mental illness: a systematic review and meta‐analysis. Acta Psychiatrica Scandinavica, 125(6), 440-452.

Secher, R. G., Hjorthøj, C. R., Austin, S. F., Thorup, A., Jeppesen, P., Mors, O., & Nordentoft, M. (2014). Ten-year follow-up of the OPUS specialized early intervention trial for patients with a first episode of psychosis. Schizophrenia Bulletin, sbu155.

Sells, D. J., Stayner, D. A., & Davidson, L. (2004). Recovering the self in schizophrenia: An integrative review of qualitative studies. Psychiatric Quarterly, 75(1), 87-97.

Thomas, N., Hayward, M., Peters, E., van der Gaag, M., Bentall, R. P., Jenner, J., … & McCarthy-Jones, S. (2014). Psychological therapies for auditory hallucinations (voices): Current status and key directions for future research. Schizophrenia Bulletin, 40(Suppl), S202-S212.

Thompson, K. N., McGorry, P. D., & Harrigan, S. M. (2003). Recovery style and outcome in first-episode psychosis. Schizophrenia Research, 62(1), 31-36.

Van Os, J., Rutten, B. P., & Poulton, R. (2008). Gene-environment interactions in schizophrenia: review of epidemiological findings and future directions. Schizophrenia Bulletin, 34(6), 1066.

Varese, F., Smeets, F., Drukker, M., Lieverse, R., Lataster, T., Viechtbauer, W., … & Bentall, R. P. (2012). Childhood adversities increase the risk of psychosis: a meta-analysis of patient-control, prospective-and cross-sectional cohort studies. Schizophrenia Bulletin, 38(4), 661-671.

Hearing Voices NYC members Noel Hunter & Tami Gatta sharing thoughts about voice hearing  at New York University on July 23rd.

 

How hearing voices, long assumed a sign of mental illness, can be a part of the human experience

The Globe and Mail; Wency Leung, 7/12/2015

Over the years, the 53-year-old Toronto resident has learned to live with a constant symphony of sounds without the use of medication. He listens to his voices, converses with them and has even come to appreciate the chatter.

“I would be regretful if it went away,” says Healey, who began hearing phantom sounds at the age of six. “It’s just kind of part of me and I’ve made peace with that.”

As researchers are discovering, auditory hallucinations are neither rare, nor necessarily a sign of serious mental illness. A large study published in the journal JAMA Psychiatry in May, involving 31,000 respondents from 18 countries, found as much as five per cent of the general population experiences auditory or visual hallucinations at some point in their lives. Scientists, health professionals and people who experience them are beginning to view them as a meaningful part of the human experience and not just as a problem that needs to be treated or eliminated.

Auditory hallucinations are being tackled with more empathy in popular culture too. Films, such as last year’s Birdman and Love & Mercy, a recent biopic of The Beach Boys singer/songwriter Brian Wilson, break away from stereotypical portrayals of auditory hallucinations in horror or violent crime genres. Meanwhile, celebrities including musicians Pete Townsend, Carlos Santana, and Jennifer Hudson have openly discussed finding inspiration in music and voices only they can hear. (In his 2012 memoir Who I Am, Townsend recounts a childhood boating trip, during which he mysteriously began hearing “violins, cellos, horns, harps and voices.” The frontman for the rock band The Who reveals it’s an auditory experience he’s always tried to recreate.)

“Hearing voices has for a long time – perhaps for hundreds of years – been regarded as a sign of madness,” says Dr. Angela Woods, a co-director of the interdisciplinary research project Hearing the Voice at Durham University in Britain. But, she explains, “I think when you start to look more closely at the experience itself … and if you start to you really talk to people, you get a much more complex picture about what’s going on and how that can be understood.”

Auditory hallucinations are perhaps most commonly recognized as psychotic episodes symptomatic of schizophrenia. But they’re also linked to other mental illnesses, including depression, anxiety and post-traumatic stress disorder, as well as substance use.

Stress, such as that following the death of a loved one, can be a trigger. Some people who are otherwise healthy report hearing phantom sounds, too, even if only as one-time incidents.

Rather than looking solely at objective measures, such as the prevalence of the phenomenon, Woods and her research team, in a study published online by the journal Lancet Psychiatry in March, examined what it feels like for people to hear voices.

While some of the more than 150 participants described actual audible experiences, others perceived them as “thought-like,” but nonetheless coming from a source separate from themselves. Still others reported hearing voices as a mix of the two.

Most participants heard multiple voices, each with their own characters or personalities. Contrary to popular belief, not all of these experiences were negative or menacing. Some hallucinations were pleasant, or even downright mundane.

According to one participant’s account of hearing voices: “They usually tell me to do things, but not dangerous things. Like they’ll tell me to take out the garbage or check the lock on the window or call someone.”

Research such as this is part of a growing effort to not only examine how auditory hallucinations occur, but to understand the experiences of people who have them and to figure out how to interpret those experiences.

Woods notes that the idea of listening to what phantom voices had to say was once common in the field of psychiatry, at a time when psychoanalysis was popular.

The aim was to find meanings behind the hallucinations, teasing out their links to patients’ past traumas.

That changed during the latter half of the 20th century with the rise of biological psychiatry, a branch of psychiatry that focused on physical causes of and treatments for mental illness.

With biological psychiatry, “it was explicitly discouraged to ever talk to a patient about what the voices were saying because people felt that that was colluding in a kind of hallucinatory or delusional world that wasn’t real,” Woods says.

“The task of a psychiatrist was to shift people to a conventional reality. And if you inquired too deeply into their reality, you weren’t going to help with that task.”

These days, Woods says, the momentum is starting shifting toward a more holistic approach, thanks to groups such as the International Consortium of Hallucination Research, which promotes collaboration between scientists, mental-health professionals and individuals who’ve experienced hallucinations, and the international peer support movement Hearing Voices Network, which champions new perspectives on the phenomenon.

While not all of us literally hear them, we all have an inner dialogue or memories of conversations we’ve had in the past, Dr. Sean Kidd, psychologist-in-chief at Toronto’s Centre for Addiction and Mental Healthsays.

For the most part, we perceive these voices and sounds to be generated by ourselves. But in people struggling with psychosis, this connection is somehow lost and these voices and sounds are experienced as something other than oneself, Dr. Kidd explains, noting researchers have discovered differences in the mechanisms of brain areas relevant to distinguishing this distinction.

Another type of auditory hallucination may occur in individuals who experience hearing loss, akin to phantom limb pain, Dr. Danilo Vitorovic, assistant professor of neurology at the University of Vermont says.

In 2013, Vitorovic encountered the curious case of a 60-year-old patient with a history of hearing loss who suddenly began hearing phantom songs, as though someone had turned on a radio.

In cases such as these, the brain perceives sensations even without input from the body, he says. “The brain starts playing on its own.”

But for Healey, the science behind what causes auditory hallucinations is less of a concern than how to cope with them. To this end, he started a Toronto Hearing Voices group, part of the international Hearing Voices Network, about five years ago. He’s tried using anti-psychotics, which helped him sleep better, but didn’t quieten his voices.

What has worked instead, he says, is to hear them out. His hallucinations now act as a barometer for how well he’s coping with whatever’s going on in his life. Even the negative voices serve a purpose; they alert him when he needs to address a problem before it becomes overwhelming, he explains.

“It’s just part of life. It can be a really difficult part of life, but it can help you decipher … what’s going on and what you can do,” he says.