NYAPRS Note: The following interview describes a new opportunity for the United States to develop $250,000 in new approaches through the Hearing Voices Research and Development Fund to build alternative approaches to mental health experiences. The technical assistance will be up for bid in April, and the Fund hopes to dedicate resources to peer-run groups in combination with community mental health centers. The interview reviews alternative approaches in other countries and notes the extreme lack in recognition of these approaches as valuable models of intervention in the US. Their adoption and integration may be the key to building out culturally competent systems of mental health care that address poverty, trauma, and experiences with homelessness and abuse.
A Conversation with Gail Hornstein and Jacqui Dillon
Foundation for Excellence in Mental Health Care
Jacqui Dillon is National Chair of the Hearing Voices Network, England, and Gail Hornstein, PhD, is an author and Professor of Psychology at Mount Holyoke College. They are advisors to the Hearing Voices Research & Development Fund at the Foundation for Excellence in Mental Health Care.
Interview by Gina Nikkel, PhD
Q. Gail and Jacqui, it is fantastic news that the Hearing Voices Research and Development Fund has received $250,000 in new funding. What is your long term vision for the Fund?
A. We have been building the infrastructure for the Fund and planning this project for several years and are delighted now to be able to move forward. Our long-term vision is to enable people all over the United States to have access to hearing voices peer-support groups the way people in Britain and Ireland and Australia and Denmark and 25 other countries around the world currently do.
And as that capacity builds, as facilitators in more regions are trained and groups are able to start up at a more rapid rate and be maintained in regional networks over the long term, the need for research will become even more important. Thousands of people all over the world have been significantly helped by these groups – even people who have been seriously distressed or disabled for many years – and it is essential to understand more precisely how they work. Our vision for the Fund includes training, network development, and research as interrelated processes throughout.
Q. Why do you think that the USA currently lags behind so many other countries in the world, in terms of numbers of groups available and awareness of and access to this exciting and innovative approach?
A. We have fewer alternatives of any kind in the US; hearing voices groups are just one example. American psychiatry has a narrower framework for understanding and treating mental illness than is present in much of the rest of the world, and it concentrates largely on genetics and biochemistry.
The role of trauma, abuse, racism, poverty, and other social factors in creating the conditions in which voices and other forms of distress arise are especially neglected in our system of care. The more serious the diagnosis, the more likely Americans are to be treated solely with medication, usually with a “cocktail” combining 3 to 5 different drugs. People who hear voices or have other anomalous experiences are often diagnosed as schizophrenic and assumed to have a chronic and increasingly debilitating illness.
Patients and their families in the US do not hear about alternatives to the medical model, and even when their medications cause serious side effects they are unlikely to be aware of social and community-based programs. This is a serious problem, since international research shows that in cultures where mental illness is framed primarily as brain disease there is more stigma, more pessimism about the possibility of recovery, and poorer outcomes. And yet despite this, we have seen a striking interest in the hearing voices approach everywhere in the United States where it has thus far had a chance to be introduced.
Q. When the need for these groups is so great and so immediate, how do you rationalize spending a portion of the grant money on research when you could be using it to establish even more support groups in the community?
A. There is no question that the need for groups across the United States is urgent, and that is why we are spending the first year focused primarily on training more facilitators and choosing five diverse regions as training centers. But a key part of the reason that clinicians remain unaware of or cautious about recommending the hearing voices approach is that they can’t turn to research that clearly explains how it works.
It is essential, both for the development of the approach in the US and for its evidence base to be stronger, that more research be done. We see our collaborative model — combining “expertise by experience” with “expertise by profession” — as offering a distinctive way of approaching the problem.
Q. Recovery movement leaders with lived experience take a strong stand: “Nothing about us without us.” They insist that legitimate research and effective programs must be co-produced by people with lived experience. How is this issue addressed in your research design and practice, in the development of the training curriculum and in the on-the-ground implementation aspects of the Hearing Voices Fund project?
A. The design and implementation of the project mirrors approaches advocated and practiced by the Hearing Voices Movement internationally, a model of collaboration which is based on mutually respectful relationships, authentic partnerships between experts by experience and experts by profession, working together to bring about the emancipation of voice-hearers.
With this in mind, the Hearing Voices Fund project design has been entirely co-produced with someone with substantial lived experience of hearing voices, the training curriculum was designed by someone with lived experience, the training will be facilitated by a cohort of trainers with lived experience of hearing voices and other unusual sensory experiences and all training will be delivered to a mixed group of experts by experience and experts by profession, in an intensive, experiential, learning process.
This shift from traditional hierarchies, divisions and power structures creates a number of new possibilities and the potential for shared bonds among all concerned.
Q. In what ways might someone who hears voices or has other distressing experiences benefit from attending a Hearing Voices peer-support group?
A. We have written a recent article specifically addressing this question, and we encourage people to take a look at it. There are many concrete benefits of attending hearing voices groups, including the opportunity to learn new coping strategies from those who have “been there” and gaining more insight into the function and significance of the voices – why are they there?
People who hear voices often end up extremely isolated, with few if any opportunities to talk about what is happening in their minds and bodies, in a context where they will not be judged. People often reveal in these groups feelings or thoughts that have not had an opportunity to be brought into the open, to be examined, perhaps challenged. People offer empathic and pragmatically useful insights to one another. And they are able to create an account of what is happening to them, often for the first time, which is crucial to moving forward.
One of the key elements of the hearing voices approach is its commitment to openness, to allowing for a diversity of explanations, and not privileging any one explanation over another.
Q. Is there support available for family members of those who hear voices?
A. It can be terrifying to be a family member of someone who hears voices, especially if the voices are threatening. We have had many family members who have participated in trainings we have done in the past, and they have made important contributions to the development of the approach. Depending upon the specific ground rules of the group in a particular location, family members may be welcome to participate alongside voice hearers.
Q. Are people who attend HV groups encouraged to stop taking medication?
A. No, people who participate in hearing voices peer-support groups are not encouraged to do or not to do any one thing; the whole point is to discover what works for them personally. Many people in these groups have taken or continue to take medication. They learn a great deal from one another about side effects (which doctors unfortunately often fail to discuss) and most importantly, about coping strategies that work in addition to or instead of the medication.
Some people find that once they have better understood their voice-hearing experience and have managed to renegotiate the relationship that they have with their voices, then there is less need for the use of powerful medications to suppress the voices. In this instance, people may decide to begin slowly to reduce their medications, under medical supervision. Many people have been able to do this with the combined support of their psychiatrist and their Hearing Voices Group.
Given the serious health risks that have been shown to result from long-term use of psychiatric medications, we ought to be encouraging any approach that offers a complementary or alternative form of healing.
Q. How might those who are interested in having their region selected as a training center connect with the project?
A. We will announce in April the guidelines for submitting applications, and look forward to a vigorous competition to help us decide on where to locate the five regions. We especially hope to get collaborative applications from mental health organizations and peer-run community groups, so that once the training has been finished, there is already in place the beginning of a network for groups and facilitators.
We also intend to host a public event as part of each of the trainings so that people from diverse parts of that community can learn about the hearing voices approach in a brief introductory session, for example, in a lecture or a panel discussion at a public library. So the more committed and collaborative an application and the more innovative it is in imagining ways to involve the public, the more likely it is to be chosen.
Q. What is the one thing you want the community to know about people who hear voices?
A. That people who hear voices are ordinary people living with an extraordinary experience and they can and do live fulfilling and productive lives, with the experience of hearing voices.