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

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,... ‘‘ the 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.