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Redefining hearing voices

If it was not for social psychiatrist Professor Marius Romme, visiting professor of the University of Central England, the Hearing Voices Network may never have been founded. He describes why he believes hearing voices – or auditory hallucinations – is not necessarily symptomatic of an illness.

- based on a speech given at the launch of The Hearing Voices Network, in the summer of 2000.

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"Hearing voices in itself is not a symptom of an illness, but is apparent in 2 - 3 % of the population. One in three becomes a psychiatric patient - but two in three can cope well and are in no need of psychiatric care and no diagnosis can be given because 2/3 are quite healthy and well functioning.

There are in our society more people hearing voices who never became psychiatric patients than there are people who hear voices and become psychiatric patients.

The difference between patients hearing voices, and non-patients hearing voices, is their relationship with the voices. Those who never became patients accepted their voices and use them as advisers.

In patients, however, voices are not accepted and seen as evil-messengers.

Don’t kill the messenger

They are messengers and they have a message. They are related to sincere problems that occurred in the person’s life and they tell us about those problems. Therefore it is not wise to kill the messenger. Instead of not-listening to the message we should look how to help and sustain the person in solving their problems. (It is like it has been in many wars and conflicts in ancient times already, where the messengers were killed when a message was not welcome).

Research shows also that hearing voices in itself is not related to the illness of schizophrenia. In population research only 16% of the whole group of voice hearers can be diagnosed with schizophrenia.

Also, therefore, it is not right to identify hearing voices as an illness. Psychiatry in our western culture, however, tends unjustly to identify hearing voices with schizophrenia. Going to a psychiatrist with hearing voices gives you an 80% chance of getting a diagnosis of schizophrenia.

However, when you identify hearing voices with illness and try to kill the voices with neuroleptic medication, you just miss the personal problems that lay at the roots of hearing voices - and you will not help the person solving those problems. You just make a chronic patient.

Handicap

Many patients rightly realize that their experience of hearing voices is wrongly interpreted as a symptom of an illness of schizophrenia. Many patients also rightly feel that it is a handicap that they are not allowed to talk about their voices in psychiatry on fully unjustified grounds.

Many patients also are unjustly treated with high doses of neuroleptics which becomes a drawback to their development and their possibility to take their lives in their own hands.

Therefore many voice hearers are glad that there is an opportunity created by the National Hearing Voices Network, where their experience is recognized and accepted as real. Where the possibilities are available to talk about this experience and be appreciated for it.

Groups

In these groups of voice hearers people can learn form each-other about coping with their voices and they can support each other in their battle to stop being discriminated against. I do not deny that there exists a pattern of behaviour and experience that can be categorized as "schizophrenia.

The question, however, is how this pattern of behaviour and experience has developed in the diagnosed individual. We know quite a few people who, when they first heard voices, were not able to cope with their voices and developed a range of secondary reactions that mimic the whole range of schizophrenic behaviour and therefore were diagnosed as such.

But when they started to listen to their voices and recognise their problems and were able to learn to cope with their problems they were also able to cope with their voices and the full range of reactions diminished or vanished.

Help

Therefore everyone who hears voices and has troubles with them, should be given the opportunity to assess the relationship of the voices. Their life experiences should be assessed for the reasons for hearing voices, before they become diagnosed and are treated for an illness instead of being helped with their problems.

The negative attitude of our society and our psychiatric services towards hearing voices and schizophrenia should be scrutinized. As long as that is not the case HVN offers a unique opportunity for voice hearers to scrutinize their own victim status and help each other to overcome the negative attitude of the society the consequences of discrimination related to it.

Prognosis

The prognosis of hearing voices is more positive than generally is perceived. In Sandra Escher's research with children hearing voices she followed 82 children over a period of four years. In that period 64% of the children’s voices disappeared congruently with learning to cope with emotions and becoming less stressed.

In children with whom the voices were psychiatrised and made a part of an illness and not given proper attention, voices did not vanish, but became worse, the development of those children was delayed.

Normalising the experience within the family was of help to children and parents who became able to support the child with existing problems. While the illness concept estranges parents and children, makes them afraid and introduces a fatal outlook on the future of a life-time illness.

Therefore the HVN is of such importance and should expand its activities in training professionals to react differently with voices and voice hearers to support each-other instead of deny their experience and try to kill it. To develop actions that will end the social taboo.

As long as there exist a social taboo against voices psychiatry will keep up his role as custodian of this taboo. Because that is what psychiatry is set up for, to watch over societies interests in mental health affairs. In itself this is an adequate role when it is done rightly and effectively, which is at the moment not the case as far as voice hearing is concerned.

Democratic force

The social taboo however will change if the uniting of people hearing voices becomes strong enough as a democratic force to realize that change, as has been the case with the gay movement. Therefore it is good that there are not only national networks, but that there will be more international co-operation's between the different countries in which the movement is developing.

It started with a National Network for voice hearers in Holland in 1987. While people came together at the first conference of voice hearers in the city of Utrecht. Voice hearers decided to start an association. At that time we all did not know much about hearing voices. Research was practically only done from a point of view of illness and only at the patient hood level.

Thereafter England was the first country, and Manchester the first city to pick up this idea and got best organized and most active. Therefore an international stimulating role would fit the UK well. In the years that have passed there has been a gradual development of hearing voices networks over Europe. First in Finland, thereafter in Italy, Portugal, Sweden and Germany ,and . Also outside of Europe it started in Japan, Australia, the USA and even Malaysia.

When we look at the different countries it shows that good developments like in England need a paid professional co-ordinator to support and organize the network. This is the case in Finland and Sweden. In other countries development is slow because not enough human and financial resources are invested."

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Julie Downs, co-ordinator of the Hearing Voices Network (HVN), offers a brief history of the organisation, and outlines what it represents.

Aims and purpose of HVN

Part of the overall aim of HVN is to promote positive explanations of voice hearing experiences and give people a framework for developing their own ways of coping. In order to cope with their experiences people need to take control of their voices and regain some power over their lives.

The aims of the network are

· To raise awareness of voice hearing, visions, tactile sensations and other sensory experiences

· To give men women and children who have these experiences an opportunity to talk freely about this together.

· To support anyone with these experiences seeking to understand, learn and grow from them in their own way.

We try to achieve our aims through these objectives:

Promoting, developing and supporting self-help groups
Organising and delivering training sessions for health workers and the general public
Making available a telephone line that gives information and help to people who experience hearing voices, seeing visions and tactile sensations
To give men, women and children who have these experiences an opportunity to talk freely about them
Produce four newsletters a year

How the Hearing Voices Network started.

The Hearing Voices Network has developed from a handful of groups to become part of a national and international network. The groups started as many voluntary groups do out of necessity, with the impetus coming from a voice hearer. It was based on the revolutionary research of Professor Marius Romme and Sandra Escher. Their research proposed that the way to cope with hearing voices was to talk about them, to get people who heard voices to get together to talk to each other about their experiences.

Whist this may not sound very revolutionary it nevertheless was. At the time of the research (1987), classical psychiatry regarded hearing voices as a delusion, a psychotic symptom, a symptom of schizophrenia. To talk to the person hearing voices was to collude with their delusion. The treatment was to ignore the voices and give the person medication to get rid of them, if this did not work the dosage was increased.

Often the voices would not go away and the people suffered severe side effects that sometimes ruined their quality of life and destroyed relationships. Though I write in the past tense and ideas and psychiatric practices have, and continue to change in relation to hearing voices, much of this practice is still carried out today. Sadly some people still do not get the help they feel they want and this is where hearing voices groups fill a need.

The first group

The first UK hearing voices group was formed in 1988, it began as a small planning group originating in Manchester, inspired by the pioneering work of Romme and Escher and the Dutch self help group, Foundation Resonance which was established through Romme and Escher’s work.

One of Romme’s patients, Patsy Hague, had persistently heard voices, her quality of life was all but destroyed and she was becoming increasingly suicidal. Patsy had developed a theory based on a book by Julian Jaynes, ‘The Origins of ‘Consciousness in the Breakdown of the Bicameral Mind’ (1976). She found it reassuring to read that hearing voices had been regarded as a normal way of making decisions until about 1300 BC. According to Jaynes, the experience of hearing voices has almost disappeared and been replaced with what we now call consciousness. Patsy Hague shared this information with Romme.

After thinking through what Patsy had talked about, Romme eventually decided to set up meetings between Patsy and other people who heard voices. Romme listened with interest and amazement as they talked to each other, he was struck by the way in which they communicated and understood each other. These meetings continued and every session between people who heard voices produced a great deal of recognition of each others plight. However they also revealed what Romme described as, ‘’a huge void of powerlessness, in my experience none of these patients were able to cope with their voices’’

Romme and Esher decided that in order to help people who were not coping well with their voices they must find people who were. Consequently, Romme and Patsy appeared on a popular Dutch television programme. Patsy and Romme talked about her experience of hearing voices and invited people to contact them after the programme. The response was surprising, seven hundred people contacted Romme. Three hundred of these said that they were not coping well, 150 said they had found ways to manage their voices.

The response of the people who were coping led Romme to organise contact between people to exchange information and discuss their experiences, eventually going on to organise a conference to gather more information. This was the beginning of hearing voices self-help groups, Romme and Escher went on to carry out more research on voices, the Hearing Voices Network had begun.

Foundation Resonance

The conference, led to establishing ‘Foundation Resonance’, whose aim was to break down the social taboos surrounding voice hearing. Foundation Resonance is a network of people who hear voices whether these are associated with psychiatric illness or not. Families and professionals also form part of the membership. Similar to the UK network, It has a telephone link and puts people in touch with each other and has self help groups throughout Holland.

The UK experience

In 1988, Paul Baker, a community development worker from Manchester

attended a conference in Trieste. This was called ’The Question of Psychiatry’ and was sponsored by the World Health Organisation. Baker was there in a search for non-medical solutions to mental health problems and It was here that he met Romme and Escher who were presenting information of their work on hearing voices.

For mixed reasons Baker found this fascinating, having a close relative who experienced voice hearing and as a community development worker he was keen to promote and develop initiatives that supported people in maintaining their own autonomy in the face of distressing symptoms. He left Trieste with his interest aroused and later that year, in November, Romme invited him to attend a conference in Maastricht, this was called simply, ‘People who hear voices’.

Romme explained to Baker that the decision to hold a conference was not his, but that of Foundation Resonance, the patients felt that professional mental health workers were not accepting the reality of their voices. For this reason greater numbers of professional mental health workers than voice hearers had been invited to the conference. The people who heard voices wanted to demonstrate that normal healthy people hear voices without being psychotic. The conference fulfilled the hope that the professionals would listen to the explanations and experiences of the people who heard voices. Baker was impressed with the conference, describing it as fascinating and extremely useful,... ‘‘ Fundamental to the approach adopted by Romme and Escher and Resonance, has been its emphasis on partnership between voice hearers themselves and professionals who followed this lead; this was a refreshing change from most of the approaches I had come across before, which rarely - if ever, gave such importance to the views of those who had actually experienced the mental health difficulties under consideration.’’ (Baker 1989)

Following the conference Baker came back with these words from Romme in his mind, ‘‘I ask you to do the same in England. Groups need to be established in each country, where people can talk about hearing voices ...it takes groups of people with the same experience to change attitudes… in America and England at the moment, psychiatrists are conducting themselves as parents. My goal is not to change psychiatry, not to change the parents but to offer the hearers of voices an organization through which they can emancipate themselves’ ( Romme in Baker 1990)

Baker proceeded to interest other people in this idea and in 1989 Romme and Escher and a member of foundation resonance visited Britain. Before the visit Baker had set up a series of public meetings in Manchester, Sheffield and Liverpool. The meetings were well attended by voice hearers, their relatives, members of the public and mental health workers. Other meetings followed, eventually groups were set up in London and Manchester, these were the first UK hearing voices groups.

What are Hearing Voices groups?

Hearing Voices groups are typically, a number of people who share the experience of hearing voices, coming together to help and support each other, they exchange information and learn from each other share the same problems and may have similiar life situations. Sometimes the group may include relatives and carers of people who hear voices.

The purpose of hearing voices groups is to offer a safe haven where people feel accepted and comfortable. They also have an aim of offering an opportunity to for people to accept and ’live with their voices’, in a way that gives some control and helps them to regain some power over their lives. However, these are broad aims and not all group members will use the group for this purpose

Many people feel who hear voices feel completely powerless and say that their lives have been taken over by the voices. Most have never had an opportunity to talk to anyone until they attend a group and all members say that talking helps them. Members will use the group in different ways, at different times of their lives. This is why it is not very useful to think of groups in terms of measurable outcomes. When it comes to reviewing the group, (a useful exercise to check if members are getting what they want from the group), evaluation should be creative.

It is of little value to think of success in terms of numbers of members, these are bound to fluctuate according to need, most groups are fluid and members will move in and out of them as changes occur in their lives. Some people take great comfort from just knowing the group is there, and although it may be a resource they use infrequently, they nevertheless are glad of, and find comfort from its existence.

Campbell goes on to make the important point that, ’’central to the argument is the proposition that people with a mental illness diagnosis can be providers as well as recipients of care’’.

An important and fundamental part of self-help groups is that they validate an individual’s experience. They can make an astonishing difference to, and can be a turning point in peoples lives. Ron Coleman (1999) (describes how his first visit to a hearing voices self-help group affected him. ’’ Anne Walton, a fellow voice hearer who, at my very first hearing voices group asked me if I heard voices. When I replied that I did, she told me that they were real. This does not sound like much but that one sentence has been a compass for me showing me the direction I needed to travel and underpinning my belief in the recovery process.’’

Coleman’s story is well documented elsewhere, so briefly I will just say that he eventually became the National Co-ordinator of HVN. Ten years on he is the director of several companies that provide publications, training and organise conferences on mental health issues. But his ability to cope with hearing voices developed from the crucial point of admitting he heard voices and having his experience accepted by other people. This admission and acceptance were the beginning of coming to terms with coping with his voices.

Other groups also use the analogy of travel, the journey back to taking control of your life is hard work, but it can be done with the a good map of the terrain. Self-help groups can provide this.

See also:
Raising Our Voices - An Account of the Hearing Voices Movement - by Adam James

Copyright Psychminded, 2001