Family Members

 
Information for Family Members of People Who Hear Voices

This information for parents, other family members and friends is intended to help you to develop new and more empowering ways of thinking about your family member/friends voice hearing experiences – and to – help you find ways to assist family members and friends who hear voices. It is based on and adapted from the work of Sandra Escher, Marius Romme and other researchers & workers who are part of the international Hearing Voices Movement. It also draws on information for family members developed by the Gloucestershire Hearing Voices Group, Hands On Scotland, The Voice Collective and Youth Health Talk.
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Click on title to go directly to individual sections.
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Contents

  1. Why we have written this information leaflet
  2. Introduction
  3. How do most people react when their family member or friend talks about hearing voices?
  4. “Normal” adults and children hear voices
  5. Hearing voices and traumatic experiences
  6. Voices as messengers
  7. The voices may stay but voice hearers can cope with them
  8. Voices are normal
  9. An Action Plan for Helping a Family Member or Friend who Hears Voices
  10. Key Information about hearing voices
  11. Where to get support
  12. Publications
  13. DVD´s
  14. Links
  15. Acknowledgements, references and sources

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1. Why we have written this information leaflet

This information is for parents, carers and friends and has been put together in the hope that it will enable you to develop a new and more empowering way of thinking about the your family members/friends experiences and that it will help you in finding ways to assist them in their emotional development and recovery from hearing overwhelming voices.

Unfortunately, there is very little practical advice available about people who hear voices that addresses your needs as parents, family members and friends, this is a shame because you are the most important forms of support to them. So, we wanted you to know that there are some simple common sense things that you can do to help a family member or friend who hears voices.

We hope you will find the information helpful.
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2. Introduction

First things first, From the research carried out (1) into the experience of adults and children who hear voices it has became apparent that:

  • To hear voices is in itself is a normal though unusual experience
  • However, it is possible that you can become ill as a result of hearing voices when you cannot cope with them
  • your family member/friend can develop ways of hearing voices as they learn to cope with the life’s problems (and the emotions and feelings involved with these problems) that led to the voices starting in the first place

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3. How do most people react when their family member or friend talks about hearing voices?

When you find out that a family member or friend hears voices it can be devastating. In the book about children who hear voices the authors Sandra Escher and Marius Romme say that some family members said it “felt like my whole world had collapsed.”  They say this reaction is understandable, for everyone is naturally very protective of  family members and  do not want to see them distressed, hurt or confused. However, there is a crucial question that Sandra and Marius say needs to be asked.

Why do we react in this way when we discover a family member or friend is hearing voices?

The underlying reason for family members reactions is that is based on information picked up about the meaning of hearing voices, mostly  based on assumptions held by society, especially the widely held belief that to hear voices is the same as the mental illness “schizophrenia”. (3)

 The good news is that this belief is not correct. Whilst it is the case that hearing voices is apparent in about 60% of the persons who have been diagnosed with schizophrenia. It is not the other way around! If you hear voices that does not mean you have schizophrenia. (4)

There is an even more important issue that you may not be aware of: hearing voices in itself is normal – but – it is possible to become ill from hearing voices if you cannot cope with them. This means that it is coping with hearing voices that is the problem and not the voices in themselves. (5)

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4. Normal” adults and children hear voices

The fact that “normal” people hear voices is based on a lot of research. Several large scale population (epidemiological) studies have shown that about 4 % of the population hears voices. Of these 4% of the people who hear voices about 30% seek assistance from mental health services (6). Amongst children however, even more of the “normal” population hears voices (8%) and as with adults about 30% are referred to mental health services. (7)

What this means is that there are apparently many more people who hear voices who do not require the support of mental health services then those that do. This is because they can cope with the voices and function well in in their everyday lives.

Unfortunately as Marius Romme and Sandra Escher report, most of the information that we have about the experience of hearing voices comes exclusively from research with patients; people who obviously cannot cope with the voices and needed help. These are people who feel that the voices made them feel powerless and who were overwhelmed by them. This is the case for research for adults and children who are hearing voices. However, you can find out more about people who can cope with their voices or even have positive experiences  as you will find below (8).

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5. Hearing voices and traumatic experiences

In the research into hearing voices it has been found that a common theme in both groups (adults and children) is the high percentage of traumatic experiences that have been found to have been the trigger for hearing voices. In adults around 75% began to hear voices in relationship to a trauma or situation that made them feel powerless. (9)

Examples of the kinds of traumas that trigger voices include the death of a loved one, divorce, losing a job, failing an exam, but also longer lasting situations like being physically, emotionally or sexually abused. With children the percentage was even higher at 85%, with some traumas specifically related to childhood. These traumas might include being bullied by peers or teachers, or being unable to perform at a certain level at school, another commonly reported traumatic incident related to hearing voices is being admitted to a hospital for long periods because of a physical illness. (10) The research concludes that:

Hearing voices is mostly a reaction to a situation or a problem the family member or friend cannot cope with.

It is a signal.

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6. Voices as messengers

Another striking finding is that what the voices say often gives an indication of the problem that the voice hearer has.

What we see from the research by Marius Romme, Sandra Escher and others is that if attention was given to the problems the voice hearer was facing, they will be able to establish a more constructive kind of relationship with the voices. As a result they become less afraid of their voices. When a voice hearers able to consider the problems that are at the root of their distress and with the emotions and feelings involved, the voices stop being their only focus of attention. (11)
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7. The voices may stay but voice hearers can cope with them

Sandra Escher also points out the importance of fully appreciating that the the desire to make the voices disappear is a goal of the mental health care services and not necessarily that of the voice hearer themselves. There are some people who did not want to lose their voices. She ays this is OK, for the most important thing is that the voices no longer remain at the centre of their attention. This is because as the relationship with the voices changed and became more positive, instead of hindering the voice hearer the voices start to take on an advisory role. If voice hearers find within themselves the resources to cope with their voices and the emotions involved with hearing them then they can lead happy and balanced lives. (12)

The most important element in the process of positively changing your family members relationship with their voice is the support they got from their family and friends . Unfortunately,  research has shown that being in the mental health care system does not always have a positive effect on the voices, although it did find that being referred to a counsellor or psychotherapist who accepted the reality of the voices and were prepared to discuss their meaning with them did have a positive influence on how the voice hearer coped with their voices. (13)
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8. Voices are normal

“Normalising” the experience can help parents to deal with the voices – Sandra Escher says

“Try not to think of it as a terrible disaster, but as a signal for something that is troubling your family member that can be resolved. On the other hand, if you cannot accept that voice hearing in itself is normal, but believe the voices to be an illness and are afraid of the voices, then your family member naturally picks up this feeling. Imagine for a moment if you were the voice hearer and were afraid of the voices and when you looked for support from your family and friends you found that they were even even more afraid of the voices then you were. This would obviously put you under great pressure and probably mean that you would become reluctant about talking about your experiences at all.” (14)

There is a second problem, if you are afraid of the voices then you can become obsessed with the fear of the voices alone and not what the voices mean. When you are distressed and anxious you cannot listen very well to the story your family member tells about their experiences and may fail to pick up on the related problems and emotions that the voices represent.

What helps voice hearers the most is a systematic approach to understanding the voices. So to help we have developed a Hearing Voices Work Book to help map the experience. This can be used as a way to understand the stress the voice hearer is under and then to work together to find solutions for the problems raised by the voice hearing experience. (15)
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9. An Action Plan for Helping a Family Member or Friend who Hears Voices
How to relate to a family member/friend hearing voices
  • Try not to over react, although you will be understandably worried, work hard not to communicate your anxiety to your family member/friend.
  • Accept the reality of the voice experience for your family member/friend: Ask them about their voices, how long they have been hearing them, who or what they are, do they have names, what they say etc.
  • Be ready to listen to the if they want to talk about their voices and use drawing, painting, acting and other creative ways to help them describe what is happening to them.
  • Offer good listening – this is allowing person to express their feelings, encouraging them to do so. Try not to interrupt or react critically or defensively to what is being said.
  • Laughter; you do not always have to serious to show that you care, doing something light hearted can help ease tension, e.g. going to see a comedy film, remembering funny experiences, ( do not use the “pull yourself together” approach)
  • Give the person who hears voices space and time alone when they need it.

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How to reassure a family member/friend hearing voices
  • Tackle problems as calmly and objectively as possible.
  • Do not deny the experience because you feel sorry for the person but encourage them to talk.
  • Let them know that lots of people hear voices and it is possible to find ways of living with them or for them to go away.
  • Even if the voices do not disappear your family member/friend can learn to live in harmony with his/her voices
  • It is important to breakdown their sense of isolation and differentness from other people. They are special, unusual perhaps, but normal.
  • Encourage some activity and social contact each day (careful balance to strike between the stress of social interaction and becoming isolated).

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Try to find out why they are hearing voices
  • Find out as much information as you can about voice hearing, ways of learning to cope, medication and side effects.
  • Find out if they have any difficulties or problems that they are finding very hard to cope with and work on trying to fix these problems.
  • Think back to when the voices first started, what was happening when they first heard voices? When did the voices arise for the first time? Was there anything unusual or stressful that might have occurred?

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Helping the family member/friend
  • Help the person to feel stronger than the voices and give them the opportunity to talk about their voices.
  • Talking about and with their voices helps many voice hearers to cope better.
  • Ask person what they find reduces the voices, for example, being occupied and find out if they would like help with this.
  • Help empower the voice hearer by:
  • helping them to try and think and plan for what they want
  • helping them regain a sense of being in charge of their life
  • Advocacy; help them stand up for their rights, to get the best support. Be as supportive as possible without taking over things the people can do for themselves.
  • Find out about hearing voices self help groups and see if your friend/relative voice hearer is interested in attending. Get them to a meeting.
  • Practical help; sometimes day-to-day tasks can become extremely difficult for people. This pressure can be relieved by help from a friend but do not take over the task. Encourage them to do some of a task or help them to do a task.
  • If you think you need outside help, find a therapist who is prepared to accept their experience and work with the in a systematic way to understanding and cope with their voices better (for instance by using the Work Book).

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Live your own life
  • Get on with your lives and try not to let the voice experience become the centre of your family member/friends life or your own.
  • Look after yourself; this is extremely important, give yourself some time and space to relax. Find out about respite care so you can have holidays.
  • Reduce stress in the family by recognising and tackling causes of stress
  • Try to avoid being critical
  • Try to avoid over-protection / doing everything for the person
  • Try to accept that the voice hearer may not be able to express their love or gratitude in return
  • Try to offer voice hearer warmth and support
  • Learn to say ‘no’ when necessary seek professional help, counselling and support if you need it.
  • Seek professional help to set limits on difficult behaviour.
  • Reduce your sense of isolation by meeting with other carers
  • Benefits, check that you and the voice hearer are getting the right benefits

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Most people who live well with their voices have supportive families living around them who accept the experience as part of who their child is. You can do this too!

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 10. Key Information about hearing voices

The information in this section is just a brief introduction to the new way of thinking about people who hear voices developed by Marius Romme, Sandra Escher and others that might help you to face the problems your family member may have. If you want more information about the research, about the elements of the therapy that helped voice hearers or you want to read more, see the publications section below.
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Voices often arise as a coping or survival strategy
  • To survive overwhelming emotions
  • Point at real life problems in the past and the present
  • Use provoking language that can be translated into real life challenges
  • Are split off feelings – feelings that are unbearable
  • Are awful messages about terrifying past experiences

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‘Recovery’ is not about getting rid of voices but about
  • The person understanding their voices in relation to their life experiences
  • The person changing their relationship with their voices so that the voices become harmless and/or helpful.
  • Understanding the relationship between the voice experience and the life history of the voice hearer
  • Recovering from the distress the person who hear voices has to learn to cope with their voice and the
  • original problems that lay at their voice hearing experience
  • Important steps in recovering from the distress associated with hearing voices
  • Meeting someone who takes an interest in the voice hearer as a person
  • Been given hope by normalising the experience and showing that there is a way out

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Recovery and Hearing Voices
  • Meeting people who accept the voices as real; being accepted as a voice hearer by others, but also by oneself
  • Becoming actively interested in the hearing voices experience
The Research and work has shown
  • Between four and 10 per cent of people across the world hear voices
  • Hearing voice is in itself not a sign of mental illness and in itself is not related to the illness of schizophrenia. Only 16% of the whole group of voice hearers can be diagnosed with schizophrenia. Hearing voices are experienced by many people, who do so without becoming ill
  • Between 70 and 90 cent of people who hear voices do so following traumatic events
  • Voices can be male, female, without gender, child, adult, human or non-human
  • People may hear one voice or many. Some people report hearing hundreds, although in almost all reported cases, one dominates above the others
  • Voices can be experienced in the head, in the ears, outside the head, in some other part of the body, or in the environment
  • Voices often reflect important aspects of the hearer’s emotional state – emotions that are often unexpressed by the hearer
  • Hearing voices is often related to problems in the life history of the voice hearer.
  • To recover from the distress the person who hears voices has to learn to cope with their voices and the original problems that lay at their roots of their voice hearing experience
(16)

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11. Where to get support

To help family members to develop confidence in living with people who hear voices we offer training as well as producing workbooks, DVD’s and other publications.

One of the most useful tools has been developed by Working to Recovery and is called the “Working with Voices” Workbook. This is designed for voice hearers and the people they select to support them, to follow a systematic approach to unfold their relationship with their voices and by doing so to develop more effective ways of coping. Using this Workbook is a great place fro voice hearers to start the process of recovery.

Working to Recovery have produced a DVD and CD Rom set to help anyone wanting to set up and run a hearing voices group. There is a wealth of useful information that can be used by voice hearers, facilitators and family members to help people gain ascendency over the voice hearers experience.

Another way of working is known as “Voice Dialoguing” to introduce this approach there isa DVD entitled “Talking With Voices: An Introduction to Voice Dialogue”. In this DVD, psychiatrist and INTERVOICE chair Dirk Corstens describes the process of talking directly to the voices to help constructively change the relationship between the voice hearer and their voices. There also courses on how to use this approach.
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12. Publications

There are many high quality publications on the issue of recovery, hearing voices and other associated topics, in this section you can find the books, articles, online resources and DVD’s that we would recommend to you. Many of them are for sale via the Working to Recovery website

Children Hearing Voices: What you need to know and what you can do
Dr. Sandra Escher and Dr. Marius Romme (2010) PCCS Books, UK.
This is a unique, innovative book providing support and practical solutions for the experience of hearing voices. It is in two parts, one part for voice-hearing children, the other for parents and adult carers. Sandra Escher and Marius Romme have over twenty-five years experience of working with voice-hearers, pioneering the theory and practice of accepting and working with the meaning in voices.

Living with Voices: 50 stories of recovery
Marius Romme, Sandra Escher, Jacqui Dillon, Dirk Corstens, Mervyn Morris, 2009, Birmingham City University, PCCS Books.
An analysis of the hearing voices experience outside the illness model resulted in accepting and making sense of voices. This study of 50 stories forms the evidence for this successful new approach to working with voice hearers.

The Voice Inside: A practical guide for and about people who hear voices
2009, Written and edited by Paul Baker with contributions from Marius Romme, Sandra Escher and Ron Coleman. This handbook is an updated and combined version of two previously published booklets about hearing voices with new sections on talking to voices; hearing voices and schizophrenia; children and hearing voices.

Hearing Voices: A Common Human Experience
John Watkins, Michelle Anderson Publications, 2008
This book explores ways of working creatively with voices and other inner experiences to foster personal growth, healing and recovery.

Working with Voices – Victim to Victor 2nd Edition
Ron Coleman & Mike Smith P&P Press Limited, 2010
The Victim to Victor Workbook is for voice hearers and the people they select to support them. It will enable people who have difficulties to cope with their voices and to discover different sides to their voices. It will unfold their relationship with the voices and by doing so will stimulate them to acquire more effective ways of coping. Most important in this process, and well stimulated in this workbook, is to take ownership of the voice hearing experience. The workbook provides the opportunity for the person to begin the process of growing from victim to victor by writing his or her own life history in relation to their voice hearing, then moving forward to other positive growth exercises. This book will stimulate the person to plan their own future and life again, and is especially helpful for those who are presently feeling too overpowered by their voices to become their master.

Recovery – An Alien Concept, Ron Coleman
P&P Press Limited, 2011
This is an exploration of the concept of recovery. It is the life story of Ron Coleman, and tells how he gave up being a chronic schizophrenic and went back to being Ron. In ‘Recovery – An Alien Concept’ Ron attempts to reflect on the past and learn the lessons of history in the psychiatric system, by exploring recovery and encouraging professionals, clients and carers to begin their own personal journeys towards recovery.

Starting and Supporting Voices Groups
Julie Downs, (Ed), 2001 Hearing Voices Network, England.
A Guide to setting up and running support groups for people who hear voices, see visions or experience tactile or other sensations. Hearing Voices Network, Manchester, England

Hearing voices: embodiment and experience
Lisa Blackman 2001
Drawing on the practices of the Hearing Voices Network, an international group of voice hearers who are challenging the notion that hearing voices is a sign of mental illness, this book shows how the phenomenon is intimately tied to broader questions of embodiment, practices of government and regulation, as well as to the production of new forms of subjectivity emerging within and between psychiatric and psychological knowledge. More information here

Raising Our Voices, An account of the hearing voices movement
Adam James, Handsell Publishing, 2001
In this comprehensive book, Adam James demonstrates why he was made ‘Mind Journalist of the Year 2001’. He has brought both the philosophy and struggle of the Hearing Voices Network to life. In this compelling book, the history of the Network from Julian Jaynes’ work on the bicameral mind to the development of the UK Hearing Voices Network as a pseudo mainstream organisation is explained in terms that anyone can understand.

Hearing Voices: Contesting the Voice of Reason
Lisa Blackman. Free Association Books 2001
The hearing of voices is generally regarded as a pathological phenomenon, a form of mental illness. This belief in the pathology of hearing voices underpins the diagnostic systems of psychology and psychiatry and most forms of treatment. Hearing Voices, however, would appear to be far more common than often believed. Drawing on her research with the Hearing Voices Network the author reveals how many voice hearers are not suffering from mental illness, and that voice hearers who develop non-psychiatric explanations of their voices may live with them quite well. The pathological consequences of voice hearing are, to a large extent it seems, linked up with the social and psychiatric reaction to the experience. Lisa Blackman has written an important book that bears directly on some of the central assumptions of psychology and psychiatry and questions our understanding of ourselves as rational autonomous human beings.

Voices of Reason, Voices of Insanity – Studies of Verbal Hallucinations
Ivan Leudar and Philip Thomas. Routledge/Psychological Press, 2000
In this challenging book, psychologist, Ivan Leudar traces voice-hearing and its interpretations through 2,800 years of history. Through six cases of historical and contemporary voice-hearers, Leudar assisted with some contributory chapters by psychiatrist Philip Thomas demonstrates how the direct experience has been changed from being a sign of virtue to being a sign of insanity, signalling ‘psychosis’ or ‘schizophrenia’. Leudar asks the question if the experience should be taken out of the hands of psychiatry and rehabilitated as a normal, although uncommon human experience.

Making Sense of Voices – A guide for professionals who work with voice hearers
M. Romme and S. Escher, Mind, 2000
Marius Romme and Sandra Escher triggered a seismic shift in the understanding of voice-hearing. They put the powerful case for accepting and validating people’s own interpretations of their voices, and showed how such interpretations often enabled people to live with them far more effectively than bio-medical approaches. This handbook for practitioners builds on this work. It combines examples with guidance on the various processes involved in enabling voice-hearers to deal with their voices and lead an active and fulfilling life.

Accepting Voices: A New Approach to Voice-hearing Outside the Illness Model
M. Romme & S. Escher. Mind, 1993
This acclaimed book illustrates how many people who hear voices come to terms with their experience without recourse to psychiatry, focuses on techniques for dealing with voices, emphasising the importance of personal growth.

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13. DVD’s

Talking with Voices: An Introduction to Voice Dialogue
Many people who hear challenging voices have found that a turning point in coping with the experience is finding different ways of talking with understanding them. In this ground breaking DVD Dirk Corstens explores both the theory and practice of voice dialoguing techniques. This DVD will provide a step by step guide for voice hearers and workers to constructively help change the relationship between the voice-hearer and their voices. Working to Recovery, 20011

Knowing You, Knowing You
In this moving account, Eleanor Longden tells her own story of recovery and discovery, her journey through the psychiatric system; from being told she would have more chance of recovering if she had cancer; to becoming an award winning psychologist working in mental health. In the DVD Eleanor talks candidly about her experience of abuse, self-harm and voice hearing. This DVD is challenging, inspirational and full of hope for people who have these types of experiences, their families, friends and workers. Working to Recovery, 2011.

How to Set up and Run a Hearing Voices Group
Step by Step Guide on How to Set up and Run a Hearing Voices Group, Find out how you can set up and run a successful hearing voices group. The DVD includes the opportunity to see hearing voices groups in action; interviews with members and group facilitators. This step by step guide includes information and discussion material. Working to Recovery, 2009.

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14. Links

Working To Recovery

ICRA-Wholelife

INTERVOICE
For general information on hearing voices see the website of INTERVOICE (International Network for Training, Education and Research into Hearing Voices. www.intervoiceonline.org

Voice Collective
A young peoples’ hearing voices project for 12-17 year olds, parents and carers http://www.voicecollective.co.uk

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Acknowledgements, References and Sources

The information in this article has been drawn from the following sources:

1. Don´t Panic If Your Child Hears Voices, Sandra Escher, INTERVOICE

2. Hearing voices: Responding helpfully to a child or young person who appears to be hearing voices Hands On Scotland

3. Coping with Voice Hearing: Tips for Carers, Friends and Family Gloucestershire Hearing Voices & Recovery Groups

4. Experiences of psychosis: Support and challenges: Support from family, friends and partners Youth Health Talk

5. For Parents and Carers, Voice Collective

References:

(1) Accepting Voices: A New Approach to Voice-hearing Outside the Illness Model, M. Romme & S. Escher. Mind, (1993).

(2) Children Hearing Voices: What you need to know and what you can do, Dr. Sandra Escher and Dr. Marius Romme (2010)

(3) Children Hearing Voices: What you need to know and what you can do, Dr. Sandra Escher and Dr. Marius Romme (2010)

(4) Accepting Voices: A New Approach to Voice-hearing Outside the Illness Model, M. Romme & S. Escher. Mind, (1993)

(5) Making Sense of Voices – A guide for professionals who work with voice hearers, M. Romme and S. Escher, Mind, (2000)

(6) Tien, A.Y. (1991). Distributions of hallucination in the population. Social Psychiatry and Psychiatric Epidemiology, 26, 287-292.

(7) Children Hearing Voices: What you need to know and what you can do, Dr. Sandra Escher and Dr. Marius Romme (2010)

(8) Living with Voices: 50 Stories of Recovery, Prof Marius Romme , Dr Sandra Escher et al (2009)

(9) Accepting Voices: A New Approach to Voice-hearing Outside the Illness Model, M. Romme & S. Escher. Mind, (1993)

(10) Children Hearing Voices: What you need to know and what you can do, Dr. Sandra Escher and Dr. Marius Romme (2010)

(11) Living with Voices: 50 Stories of Recovery, Prof Marius Romme , Dr Sandra Escher et al (2009)

(12) Living with Voices: 50 Stories of Recovery, Prof Marius Romme , Dr Sandra Escher et al (2009)

(13) Living with Voices: 50 Stories of Recovery, Prof Marius Romme , Dr Sandra Escher et al (2009)

(14) “Don’t Panic, It’s not the end of the World, Sandra Escher, INTERVOICE website

(15) Working with Voices – Victim to Victor 2nd Edition, Ron Coleman & Mike Smith P&P Press Limited, 2010

(16) The INTERVOICE website

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