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Suicide in Australia

CHAIR —Welcome. Do you have any comments to make on the capacity in which you appear?

Ms Mahboub —The Hearing Voices Network Australia is auspiced by the Richmond Fellowship.

CHAIR —Thank you. I understand you have both been given information on parliamentary privilege and the protection of witnesses in evidence. I invite either or both of you to make an opening statement and then we will ask you some questions.

Mr Calleja —Perhaps I will start. Thank you for the opportunity to present to your inquiry. As I explained to Owen when we spoke, I think it was last Wednesday, Richmond Fellowship is not an agency that specialises in suicide or youth suicide; we are an accommodation and community outreach agency in mental health and we work with people who have experienced mental illness, and that brings with it, on many occasions, a predisposition to suicide, self-harm and so on. Any inclination or concern around suicide is part of the work that we do in our approach to recovery.

I must apologise for not having put a written submission in. We had an interesting time with the storm last week. Not only did the power go out but our server was blown out, so we did not get back onto the internet until Friday afternoon. I will put these notes in writing to Owen and you will be able to read them at your leisure.

Richmond Fellowship in WA has been in existence for 35 years. As I said, we provide both residential services and community outreach services. We have a philosophy which is based on the belief that people can and do recover from mental illness and we believe fundamental to that is the hope that exists for recovery. I underline that comment because there is a lot of literature around that actually demonstrates that if a medical practitioner—for example, a psychiatrist, a doctor or whoever—actually does not believe a person can recover from mental illness they by and large tend not to; they are maintained in their illness. The relationship and supports that are built around a position where there is recognition that mental illness is episodic, there are many factors that contribute to it and, on that basis, a person can recover are fundamental in the recovery process.

Five years ago Richmond Fellowship had contact with Ron Coleman from the UK, a Scottish mental health consultant and trainer who himself spent 13 years in the psychiatric system in the UK, six of which were in a series of locked wards. When he came to Australia he encouraged Lyn Mahboub, who is a consultant with us, to set up Hearing Voices Network Australia. We took on that view. Our board very courageously decided to do something that flew in the face of traditional psychiatry and mental health services in Australia. We did it in a participative, collaborative way but it was a fairly significant step.

What I would like to do today is to speak primarily about our experience of that and why it is important in looking at suicide in Australia. Then Lyn—who was a previous director of the Hearing Voices Network Australia and who is here today because Marlene, the current director, is away—will talk from her own perspective and the perspective of broader consumer issues and carer issues. What I want to focus on is the fact that we have had a number of groups running over the last five years, building up slowly, and in the last six months we have been trying to evaluate the impact of those groups. So we have had a questionnaire issued to participants of the groups and we have had 36 responses. That is a small sample, but these are 36 personal, real-life experiences of being involved in Hearing Voices groups. I want to run very quickly through them because I think it is the voice of the person that it is important for this inquiry to hear.

A Hearing Voices group is a group of people who hear voices who come together and exchange their knowledge and information and experience about hearing voices. In other words, they do what traditional psychiatry and mental health services say not to do, which is to talk about it. We asked them the question, ‘What benefits do you gain from participating in the group?’ Twenty-two of the 36 said, ‘I feel understood.’ Twenty-three said, ‘I feel less isolated.’ When you are talking about depression and suicide, isolation, being not understood and so on are factors that are in the mix.

The second question we asked them was about what changes they had experienced since coming to the group. Eighteen said that they heard fewer voices; 15 said the voices became more positive; 21 said they had fewer admissions—that is pretty significant; and 27 said that they had less need for emergency help. So in terms of recovery that is pretty powerful stuff.

The third question we asked them was what, since starting the group, they had become better at. Twenty-four of the 36 said that they had become better at doing things that they liked or enjoyed, so their experience of life was improving. Twenty-seven said that they enjoyed more being with other people—reducing their isolation and building social interaction. Then we asked them questions about changes since coming to the group. Thirty-one out of the 36 said that they were a more confident person. That is pretty significant given the debilitating effect that mental illness has on people and their capacity to communicate, interact and so on. So that was really significant. Then we had a whole list of individual comments that people made, and when I provide the text of this all of those comments will be available.

I will now summarise some of the things that came out of that evaluation and the implications in relation to actual research. In summary, there are a number of themes that emerged strongly from this study. The percentage of respondents personally asserting benefits of their participation in Hearing Voices groups, in each of the areas, were presented: reducing isolation, 64 per cent; enhancing feelings of being understood, 64 per cent; needing fewer admissions, 58 per cent; less emergency help, 75 per cent; improving voice-hearers’ capacity for being with others, 75 per cent; being able to speak about their voice-hearing experience, 67 per cent; increasing capacity for participation in activities that they enjoy, 67 per cent; and increasing confidence, 86 per cent.

The broader suicide research shows a strong link between depression and suicidality. Authors such as Davila and Daley in 2002 identified depression as clearly a risk factor in suicidal ideation, attempts and completions. They cite numerous studies in support of this assertion. In light of this, the central role in improving social functioning and reducing isolation that the Hearing Voices groups have been found to provide can be understood to be potentially protective against the worsening of depressive conditions and thus perhaps to reduce the risk of suicide in a predisposed individual. Given the link between stressful events and problem-solving deficits in the formulation of depression—Nezu in 1987 made that observation—the fact that groups are reported to increase coping strategies and enable sharing of the burden can be theorised to additionally be of assistance in lightening the depressive load. So it is that relationship between depression and suicide that these groups are actually getting to the pointy end of.

The Suicide Prevention Resource Centre in 2001 asserted the importance of strong connections to community support and problem solving as being protective factors against suicide, while hopelessness, relational or social loss, isolation and stigma associated with help-seeking behaviour are all identified as risk factors. So instead of closing people down these groups are opening people up to help. There are others who emphasise the varied nature of these factors and the need to explore individual as well as environmental characteristics, including those of cultures.

We believe that Hearing Voices groups are an effective way of voice hearers experiencing community support and we have found them, in this small study. to be of great assistance in providing hope through the sharing of experiences and enabling the development and sharing of workable strategies for living with a greater sense of control and power over what are disturbing experiences. This increased control enables a greater sense of hope in a future that is not dictated to and dominated by the presence of debilitating and all-consuming symptoms such as the hearing of voices or seeing of images that others do not hear or see.

So that is a snapshot of our research. I will be able to table another document—when I email Owen the findings of this brief research—which shows that our findings correspond in mirror image form to other research that has been conducted around working with voices over the last 20 years in the UK and mainland Europe in particular. I would like to leave it there. Thank you.

Ms Mahboub —Where to begin? I will tell you a little bit about me and talk a little bit about the network and, obviously, then invite questions about anything I say. I have got a background in nursing and psychology and I have worked as a program manager for Richmond Fellowship and, as Joe said, in setting up the Hearing Voices Network. I also have a lived experience, a diagnosed mental illness, and I have been on a journey of recovery since I was about 16. I began in those early days seeking strategies for, I guess, self-help—helping myself learn how to live with the difficulties associated with that. In terms of suicide, I have been hospitalised for suicidal ideation at different times. So I guess what I am saying is that I speak from experience in a number of areas, including my own life—and I am not precious; I am happy for you to ask me any questions about that.

I think suicide and what that means to an individual, how that occurs in one’s mind and the thoughts associated with it are so important to talk about. The Hearing Voices groups and the message that that the Hearing Voices Network bring to clinicians as well can support not only the people who attend our groups but also clinicians to assist in this process. The Hearing Voices Network has a two-pronged approach, and part of it is about supporting other associations to run their own groups, plus running groups within Richmond Fellowship. But it is also about teaching this approach to the whole community and mental health sector. As you heard from Joe, this sort of work has been going on for 20 years in Europe, but we are only beginning the conversation in Australia, and there are a number of places around Australia that are doing this kind of work.

The idea of the Hearing Voices Network is, hopefully, to be able to in the future bring the other states together to have a national approach to this idea of sharing information about things that are typically not spoken about. As Joe said, one of the things they used to say in the past, especially when I was nursing, was, ‘You do not talk about what people are experiencing because you might buy into their reality or their delusion.’ The fact is that you walk out and go and have a cup of tea and the person is left with that experience and are still living it. Being able to talk with other people who are having those kinds of experiences so often brings about immense relief. For example, I experience suicidal thoughts, perhaps sometimes on a monthly basis, but they do not actually mean anything. I have come to interpret them in a way that takes the sting and the impact out of them. By sharing these kinds of experiences and ways of coping with difficult thoughts and difficult voices and visions you are reducing the stress that the person is experiencing and reducing the isolation.

In the consumer movement we say, ‘ITE, I am the evidence’, even just in Perth, with the amount of people that have started to come to the groups and whom you see later on. My colleague who is on holiday at the moment and could not be here was in one of the first Hearing Voices groups that I ran; I ran one of the first ones here in Perth. She got so much benefit out of the group that she said, ‘I want to start doing some bits and pieces.’ So we said that we welcomed volunteers, and she came on. She was also a client of Richmond Fellowship at the time. She came forward as a volunteer and then she pushed me for some work. She said, ‘Right, I want a job.’ I said, ‘I will work on Richmond Fellowship and see what we can do,’ and she now runs the Hearing Voices Network; she is the coordinator of the Hearing Voices Network. You hear stories like that all the time and everywhere.

I have been blessed to go to international conferences in Scotland and in Denmark, speaking with voice hearers, staying with voice hearers and hearing them talk about their experiences of suicide, feeling suicidal and the overwhelming distress of living with these kinds of experiences all by themselves in their own minds. Within the traditional mental health system, if they go and begin to talk about those kinds of experiences, because this has not been a shared language what initially happens is that people are given more medication, so they therefore feel more drugged and are paralysed from actually dealing with the experiences they are having. Therefore, they often do not talk about them. In Voices groups, they are able to talk about them, they are able to find some sense in their experience and, as I said, they are able to reduce the feelings that make somebody want to end it all. Oftentimes we do not necessarily want to stop living; we just want to stop the pain, so we actually assist people to find new ways of dealing with it.

I will stop there. We welcome questions.

Senator MOORE —There was a guy from Scotland who was out here a few years ago, wasn’t there? I am pretty sure that I heard him at one of the seminars you ran—and he was extraordinary.

Mr Calleja —That is right.

Senator MOORE —Yes, I am sure I did. We heard evidence last week from a parent whose child had schizophrenia and went through a series of incidents. He explained the pain that she expressed when the medication she was given took away her voices. She actually felt lonely, and no-one had prepared either her or her family for the impact of her not hearing the voices. Is that something that your people, when they sit and talk about their own experiences, express to you?

Ms Mahboub —We have heard it a number of different times in different ways. I want to say at the outset that the Hearing Voices groups are not necessarily about stopping voices; they are about assisting people to learn to live with them. Sometimes, as a result of the work they do, the voices do stop. It is interesting that the people who I have spoken to in Voices networks whose voices have stopped have not been as distressed as perhaps others have. I heard of one little old lady within the public system who heard voices. She had no other supports or networks around her in the community, so her voices were her friends. What they forgot to ask her was: ‘Are they friendly? Are they positive voices?’ because that is a really good indicator for recovery. If you are getting guidance and support and then that is taken away—and for her the medication did work and it did silence the voices—you can, as she said, become terribly lonely. It is another indicator for looking at the bigger picture, because we are not just dealing with what some people might call pathology; we are dealing with a person’s whole life and their relationship to it.

Senator MOORE —Is the mainstream health system still not supportive of the process?

Ms Mahboub —We have had some really positive experiences for the most part. I said I ran one of the first voices groups, but the first voices group that started was actually in a clinic down at Rockingham mental health services. I understand there is a voices clinic at the Fremantle services. I am yet to have a chat with the people about what they are doing there. Often times in the training that Richmond Fellowship runs there are loads of clinicians who are really interested in learning more. So I think the difficulty is often that there is not a lot of money in the training budget allocated to the mental health systems. Of course, you hear that from everybody I am sure, but we want to spread the word that there is not a lot of money.

Senator MOORE —Why has Western Australia been such a leader in this area? We have just skimmed the information you gave us but it seems that a lot of this has been tried, operated and centred in WA. Is that a fair comment?

Mr Calleja —Yes it is. I would say that part of it is that I have a very brave board who are prepared to be out there and do what they feel needs to be done. We did some fairly careful work at the beginning. I went and saw the chief psychiatrist in the mental health division and said, ‘You will have heard that we are setting up this voices network. I just want to reinforce that we are not anti medication and we are not anti psychiatry,’ because those were the sorts of things that were going around—Richmond Fellowship had lost the plot and so on.

Senator MOORE —I have heard that a few times!

Mr Calleja —Really it was just that we happened to be the organisation that was prepared to take that step.

Senator MOORE —When was that?

Mr Calleja —October of 2005. The 30th anniversary of the Richmond Fellowship was the day we launched it.

Senator MOORE —Was that when Aaron Groves was the chief psychiatrist?

Mr Calleja —He had just left.

Ms Mahboub —He was not the chief psychiatrist; he was the director of mental health.

Senator MOORE —We stole him in Queensland and I have had a discussion with him about this very thing. We have not been able to break through in Queensland yet.

Ms Mahboub —Part of the original story was cultivating recovery champions and it happened in a university. Exposure to Ron Coleman happened academically and Richmond Fellowship took the step to invite Ron out here. I have to say it is only because of recovery champions like Joe and the board that these things have been able to happen. It takes this sort of leadership to be able to start those conversations and take up the challenge of bringing somebody out from the UK. I am on a stakeholders multidisciplinary group at one of the universities here where we are building a curriculum for a mental health postgrad course. I said to one of the people on the committee yesterday, ‘You had been doing recovery and this kind of thing in the UK for a while; can you tell me a little bit about how that started there.’ She said, ‘Ron Coleman was the catalyst.’ I guess that is part of it. We were lucky that he came here and assisted us and did lots of work with our organisation. That is how it happens.

Senator MOORE —My last question is about funding. It seems that you were getting some funding from different sources for a while but now that is not happening so you are having to fund it through Richmond Fellowship. Is that right?

Mr Calleja —That is correct. We are very fortunate in Western Australia to have Lotterywest, which we put a proposal to about the Hearing Voices Network and said we would like to start this in this state. Their act of bravery was to fund us for something that traditionally would not be accepted within the system. They funded us in two parts. They funded us for 12 months to enable a number of groups to be established. Then they gave us a second lot of funding to build on that and to hold a major conference as part of the second year called Recovery from Psychosis. I did send Owen the DVDs from that conference because we had 18 speakers from Europe including Marius Romme, the psychiatrist who started the hearing voices groups. So Lotterywest funded us for what ended up being close to three years with the two lots of funding. They cannot provide recurrent funding and so their funding finished at 30 June, but our organisation has made a decision to keep funding it and we will now keep looking around to see if there is any opportunity for recurrent funding. But we are committed to keeping it going anyway.

Senator MOORE —Under the new state mental health plan and the suicide plan that is linked to it, your state is the only state that has a minister who is focused on that, which the Western Australian government deserves great praise for doing. Has there been any interaction with them in terms of seeing whether that would be a program that they could support?

Mr Calleja —Minister Jacobs actually launched our Hearing Voices Network website—the upgraded whiz-bang website—in August last year. So he is aware of it. We wrote to him not long after that asking whether there was any possibility of funding. He wrote back saying, ‘No, I am sorry; we have got no money,’ but that is what bureaucrats would tell him to say. We will keep the dialogue open with the Mental Health Commission. We believe eventually that the Mental Health Commission and the equivalents in all states of Australia will see that in fact this is as important and legitimate a strategy as other funded strategies.

Ms Mahboub —I just want to add that, although I do not know what the statistics are, the suicide rate for people diagnosed with schizophrenia is huge. The support for people with that diagnosis just is not there. You would have heard from carers I would imagine who are pulling their hair out wondering what to do. It is so important that that level of support be given at some stage.

Senator ADAMS —You have communicated with the minister, but what about the parliamentary secretary, Helen Morton?

Mr Calleja —We have had a fair degree of communication with Helen. She is very supportive and always has been. Minister Jacobs is supportive as well, but he does not write the cheques. We have experienced support from the division as well. The support is there but the bureaucratic alignment between that support, what the services say and how the money is earmarked has not yet quite become aligned the way we would like it to be in relation to this.

Senator ADAMS —I would like to talk about the rehabilitation of people coming out of residential care back into the community. Do you have any role in that as a foundation?

Mr Calleja —Yes, we do. We have a number of services in the metropolitan area and in Bunbury and Busselton where people come into our service. We have a strong belief, as I said earlier, about hope and recovery being a process. Fundamental to that is relationship building based on what the person’s view of their illness and recovery is—in other words, where they want to go and how they want to achieve that—and always reinforcing a belief that they can recover. We believe we have a very high level of recovery through our services. Many mainstream accommodation services maintain people in their illness. They do not deliberately intend to maintain people, but because they have no expectation necessarily that a person can recover they will not talk to them or work with them in a way that actually builds on their skill or their confidence. So we have a holistic approach.

Ms Mahboub —Richmond Fellowship has led the way in terms of training workers in this. We have actually changed the whole structure of working with people such that we have recovery workers now and recovery support workers. So the whole program from day one in the accommodation services, or even if it is a community service, is structured around not just rehabilitation but taking the person to that next step of being able to believe they can have a meaningful life of their own choosing.

Senator ADAMS —So they have a case manager. They are actually supported by an individual.

Ms Mahboub —If they are living in one of the Richmond residences they will have a case manager who belongs to the hospital system, a recovery worker who is their worker, recovery support workers to support them to learn a range of things that they need in order to get back to what they want to do and access to other supports in the community or within Richmond Fellowship. For example, recently Richmond Fellowship brought Ron Coleman to Perth to do some more training for the whole sector, and in addition to that they made him available to talk to people from the residence. One of the people, who was an ex-resident of Richmond Fellowship but still getting supported in some way, came to that conversation. He was a young person who I have worked with in the past who has had a range of very serious symptoms, including a lot of facial and body tics. Ron said that he had completely gotten over that. He was now living in the community. He had actually invited Ron to an outing rather than the other way around. Ron could see, in the time that he was going backwards and forwards, that he was able to give him support and support the workers of Richmond Fellowship to deliver—and they get to have access to a high-profile, internationally renowned person with a recovery experience of their own. So it is a specialist type of work that they get at Richmond, I would suggest.

Senator ADAMS —I am thinking back to the public system, to Shenton Park and its locked ward with people with head injuries and issues that have perhaps predisposed them to a mental illness. How would someone from there be referred to you? How would they get into your system?

Mr Calleja —In a couple of our residential settings we have been approached by Graylands to take on people who have both a head injury and a mental illness. Because of the strong disability component, the dual diagnosis, we usually get additional funding from the Disability Services Commission. That then enables us to employ what we would call a personal care assistant, someone who is there for very practical purposes. With that, on top of the more recovery oriented work, we are seeing the same results, in the sense that a person’s behaviours can be changed and modified in light of the support that they are given. A lot of it is strong psychosocial support, which is the basis of all of the interventions of Richmond Fellowship and non-government mental health agencies. So, even in the situations where there is a brain injury or something like that, it does not mean that recovery is not possible. It just means that there might be other ways that one has to work.

There is also a simple issue around language, too. When I first went to Richmond Fellowship five years ago as CEO, all of our staff were called rehabilitation workers or rehabilitation support workers. Just the simple act of changing the names to recovery workers is a powerful image and message.

Ms Mahboub —In terms of people with high-level needs, which you are asking about, one of the services of Richmond, the Kelmscott service, is part of the community options program that they have been trying to get off the ground for over 10 years. The last group of people in the Graylands psychiatric system were considered to have such high-level needs that they did not really know how to deinstitutionalise them, and a number of those people are now living at Kelmscott.

I was visiting Richmond the other day and a lady came in who was selling jewellery. I was talking to her about the jewellery and I did not realise she was one of the people from Kelmscott. She has got into this little business of making jewellery and selling things. I did not even realise that she was one of the residents from there. So it is having that hope and expectation, like Joe said, that supports people to move beyond where they think they can move.

Senator ADAMS —How did you get yourself to where you are now?

Ms Mahboub —I was really lucky. When I was 16 or so, the first time I visited a doctor, experiencing what these days would commonly be called a psychotic episode, my doctor said, ‘Don’t worry. She’s just having a nervous breakdown. She’ll get better. She just needs old-fashioned chicken soup, a break from the stress in her life as a young teenager and family support.’ And that is what I got. So I had the language of recovery from day one. I never bought into the revolving door syndrome, thank goodness. It could have happened and it so easily does happen to so many young people today. Their experience is framed as: ‘You’ve got X diagnosis. Therefore, you might as well give up your hopes and dreams of ever working. You will always experience this and you have to be on heavy duty medication for the rest of your life.’ Having that experience of hope and belief, I did recover. Sure, I have had to do it several times throughout my life, but I know it. I know that you can recover, so I do not doubt it. So that is what I share when I work with people in the training. That is what we share with the workers who come to Richmond. In connecting with many, many people who have lived the experience of recovery, you see that it works.

Senator ADAMS —You are very fortunate.

Ms Mahboub —Yes.

Senator ADAMS —I am just thinking about some of the people I have come across over the years. If only at the start they could have had that sort of support.

Ms Mahboub —We see people coming into the Voices group who say, ‘Hi. I’m Bill. I’m schizophrenic.’ After a while, they walk in and say, ‘Hi. I’m Bill. I’m a voice hearer!’ Their whole identity changes. Imagine going to a party and introducing yourself as schizophrenic. But if you say you are a voice hearer you prompt people to lean forward and start to ask more questions. You can change your identity in the world.

Senator FURNER —Your information booklet identifies that possibly four per cent of the population experiences hearing voices. How was that figure reached?

Ms Mahboub —A range of studies have been done over the years. I cannot remember the date, but you will see the reference in there to Tien et al. They were one of the main leaders there. The statistic ranges—depending on, as you would know from the research, the questions asked and the particular group—from two per cent to 10 per cent. One study even showed that it was 35 per cent of the particular group that they asked, which was a group of students. Maybe it was around exam time, but they were all having that kind of experience. It has been replicated again and again, so they have come to this figure of between two and four per cent. What they are talking about in that particular study is anybody who has had this kind of experience. What we do is work with people who have these experiences and are distressed by them. There are a number of high-profile people who might have the experience of hearing voices, but they are not necessarily distressed by them and therefore they are not diagnosed as mentally ill. A lot of people in the community live with these kinds of things. You hear of authors and painters who will say, ‘I didn’t write the book. It was given to me.’ But what we are dealing with in the mental health sector is a subgroup of that group who are distressed by their experience or their lives are impacted in some way by the experience and then they are diagnosed.

When Professor Marius Romme first discovered this, he realised that, because there were a number of people living well in the community who were having this kind of experience, there was possibly something to share. If you can learn to cope with the voices and you are living well in the community and you are not diagnosed as mentally ill, then perhaps people who are diagnosed with a mental illness and are incredibly distressed by the experience can learn to have control and mastery over it. That is how it really started.

Senator FURNER —So most of your clients would be dealing with negative voices. Would that be the issue?

Ms Mahboub —For the most part. Sometimes people will have some positive experiences of voices as well. A large part of this work is about helping people work on the relationships between voices. For example, someone might say, ‘I have a really negative voice and it’s right here, but I have a really positive voice and it’s out there.’ We will help to try and bring that one in. A very high percentage of people with this diagnosis will identify that the voices started after some kind of trauma or some event in their life that they perceived as traumatic. They will often find that the voices are related to that experience. Getting support for those experiences, for a lot of people, is incredibly helpful.

CHAIR —I have a couple of questions. I would like to go to the issue of whether more clinicians are involved in the process now that you have it up and running and it is showing positive responses. Are there more clinicians engaging with the process now?

Ms Mahboub —There is an increasing number coming to the training, because of the interest. Word of mouth is bringing people who are interested in coming and learning more. My understanding of some of the people who have done that training is that they have found that they have more of a toolkit. They are more able to talk to people who they are working with. It might seem strange, but a lot of clinicians have said that they have not really known what to do with psychosis or hearing voices. But there is a parallel process going on as well. In Australia we are recognising that this is the way forward, so there is some training and conversations and support for clinicians to learn more, on the one hand. It is possibly not enough, but it is happening and it is happening from within academia and across the board. For a little while there, some people were a little bit frustrated. I know of one clinician who went to the UK for a number of years to consolidate and work in a system that is much more accepting of different ways of approaching this sort of topic. I believe she has now come back. That happened a little bit too.

CHAIR —Do you get clinicians referring people to you, suggesting that this may be a way for people to receive help and recover?

Ms Mahboub —Yes, I think so. Because there is not a natural referral system it is up to the individual, if they want to come to a Voices group—

CHAIR —So it is a case of suggesting or recommending.

Ms Mahboub —Yes. Other organisations, like the June O’Connor Centre, run Voices groups as well, so they would probably be able to answer that question in more detail. It is not as much as we would like. We would really like to get the message out there and assist some of the clinicians who are fearful and who have not had an opportunity to really engage with what we are talking about.

Mr Calleja —We think that there are probably a lot more clinicians out there who would like to refer to our groups but the system will not allow it. I think that is part of the issue as well.

Senator ADAMS —I was wondering how the interface was between the public system and the help that your groups can provide. How does a person get from A to B if their clinician is not able to refer or does not know about you?

Ms Mahboub —And I think, too, with better funding we could get the message out there. We could set up more groups and we could train more facilitators and co-facilitators. The co-facilitator is usually a voice hearer, and hopefully in the end they will become the facilitator. The Hearing Voices Network has to do both. We have to do the training and sharing of information but also try and support other organisations to run groups. In the future, all being well, we will be able to answer that question better because we will have more groups and more messages out there—and then more referrals.

Senator ADAMS —I come from a very small rural community and that is why I was trying to see how you are expanding the service, especially with WA having so many small rural communities. Being in Perth, I am just using Shenton Park as an example. When people are discharged and they then go back, possibly, to the area where the problem started or where they associate the voices once more, how do they get help and who do they go to?

Ms Mahboub —Part of the role of the network is to support someone in that rural community to start a voices group. In New South Wales, for example, the dad of a voice hearer who was having major troubles started the Hearing Voices Network in New South Wales. On ABC Radio National there is a podcast where you can listen to him and his daughter speaking on that. In Dundee, Scotland, the Hearing Voices Network centre was started by a carer. The role of the network is not always to run the groups. Ideally, if we could have funding to go to rural groups it would help. A voices group can start with a cup of tea and two voice hearers. That is a voices group. So it is about supporting those individuals to hold that space and helping them to hire a hall or whatever.

CHAIR —How much does it cost to run at the moment? Is there a cost for participants?

Ms Mahboub —There is not a cost for participants.

CHAIR —How much do you need to run the network?

Mr Calleja —We would probably need around $120,000 to maintain it, and that would then enable us to be a support to agencies and regional communities. We do a lot of work via the telephone. Marlene, who could not be here today, is forever on the phone. Lyn used to be forever on the phone. You could always tell when you could go into Lyn’s office: when the light on the phone was off! It is about facilitation as well as running the groups.

Ms Mahboub —And it is building relationships. We managed to develop a good relationship with an Esperance group, BOICO. There was a coordinator there who was incredible and who supported that. We had voice hearers come up from Esperance who found funding to do so. The role of Hearing Voices Network Australia is to spread the message far and wide, and also to build over to the east and connect the existing networks, but there has been no funding yet for that.

Mr Calleja —But in spite of that we have been able to support the development of a network in Tasmania. We supported Victoria. We have supported New South Wales. We have had a couple of attempts in Queensland. In South Australia I think there was a bit of contact. That is our function, really: to help grow it in other places. We are growing it in regional centres such as Bunbury, Busselton and Esperance, and we provided support in Albany.

CHAIR —Thank you. I have taken us over time, but we find this information so useful that we normally do go a bit over time. We really appreciate your time in coming and sharing your information with us.

Ms Mahboub —We appreciate it.

Proceedings suspended from 3.19 pm to 3.32 pm