This week on the show, we take a look at what life is like when you hear multiple voices in time for Hearing Voices Day. We also find out who is most likely to use complementary and alternative medicine.

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Presenter: Ellen Leabeater
Producer: Ninah Kopel

Speakers:
Douglas Holmes – Chairperson of the Hearing Voices Network in NSW
Fiona Orr – Director of International Activities in the Faculty of Health, Lecturer in Mental Health Nursing and PHD candidate at the University of Technology Sydney
Chris Zaslawski – Associate Professor, Faculty of Science, University of Technology Sydney
Dr Amie Steel – Postdoctoral Research Fellow from the Australia Research Centre in Complementary and Integrative Medicine, UTS & Associate Director of Research, Endeavour College of Natural Health
Nicole Brown – CAM user

Lifeline: 13 11 14

START OF TRANSCRIPT

Ellen Leabeater:

Hi, welcome to Think Health. Ellen Leabeater with you. Well, if you’re female, middle-aged and well-educated, it’s likely you are using some form of complementary or alternative medicine.

Amie Steel:

Women in Australia are more likely, and that’s consistent around the world as well. I think that is because women are more engaged with actually with looking after themselves.

Ellen Leabeater:

The predictors of complementary medicine use in Australia; that’s a little later on in the program.

First, think about what it would be like if while you were listening to this show, someone started yelling at you right in your ear. Maybe they are nice words or funny words, but they could also be cruel or critical. Maybe they aren’t even words, but just a wall of sound that makes what I’m saying hard to comprehend. Hearing voices is a common feature of many psychiatric disorders. If you’ve never heard them, it’s hard to understand what it would be like.

This coming Wednesday is Hearing Voices Day. An international event that aims to break down some of the stigma and develop empathy for people whose heads might be slightly louder than the people around them. Ninah Kopel with this story.

Douglas Holmes:

The male voice had always been there, I was one of those kids that actually had an invisible friend. I just thought that everybody had an invisible friend.

Ninah Kopel:

This is Douglas Holmes, and his friend is Christopher.

Douglas Holmes:

The reason I’ve called it Christopher, Christopher is very mischievous, and I equate Christopher to Christopher Columbus. You know what Christopher Columbus did? 1492.

Ninah Kopel:

Discovered America.

Douglas Holmes:

Yeah. Now, if you think about 1492, prior to that, Columbus was actually standing down on the docks with three boats, getting people to come on board for this adventure, and the Pope was saying, if you get on board the boat with Columbus, you’ll actually drop the edge of the world. If you think about it, he must have been a really good talker.

Ninah Kopel:

If all you’ve ever known is that the world flat, would you get on a boat heading straight towards the edge of the world? Columbus won over his crew with his conviction and promises. The Christopher in Douglas’s head is just as convincing.

Douglas Holmes:

He’ll say, “Aw, that machine over there, it’s just about ready to pay a jackpot.” Of course, that’s got to me into trouble lots of times.

Ninah Kopel:

If you don’t hear voices, it’s hard to imagine having someone like Christopher in your head, and for this to be so normal that you don’t even know to ask for help.

Douglas Holmes:

To get the correct diagnosis may have been some 27 years.

Ninah Kopel:

27 years.

Douglas Holmes:

Yes. I had my first interaction with the mental health services when I was 15. I had applied to join the Navy. I had dream of being in the sub-mariner. Went down to Sydney in York Street, sailed through the majority of the day, and at the end of the day, they said, “Mr. Holmes” – I sort of just knew from the tone of the voices that I wasn’t going to get a good result – “Why do you want to join the Navy?” I said, “Early retirement” – because you only had to do six years – “See the world and have a girl at every port,” and they said, “well, look, the bad news is we think you’re going to have some problems.”

Ninah Kopel:

Douglas was told to go home and to go see a GP, but he failed at his dream, and he wanted to prove himself. Instead of looking after his health, he launches himself into a search for work.

Douglas Holmes:

I just became a little bit disillusioned and floated around. Lots of different jobs. Became a long-distance truck driver in 1974. I won’t bore you with some of those things, but I pushed things to the limit.

Ninah Kopel:

Would you be happy to give some stories about what that was like?

Douglas Holmes:

There was one truck that I drove. This was when 50 miles an hour was the speed limit, right?

Ninah Kopel:

About 80 kilometres an hour.

Douglas Holmes:

I think the statute of limitations has passed, so I’m pretty safe. This particular truck, it would do 72 miles an hour when you clicked it into top gear.

Ninah Kopel:

About 115 kilometres an hour.

Douglas Holmes:

I tipped a couple of trucks over. I’ve been pretty lucky. I went to sleep a few times because even though the tablets and things you’re taking to keep your eyelids open, you actually get to a point where this body will not continue to function properly. I know it had an impact on my relationships with my children and a couple of my people I was married to. It suited me. The lifestyle suited me because you didn’t have to get to know people very well and we moved around a lot. …

Ninah Kopel:

Christopher, the imaginary friend who dares Douglas as a child, encouraged him to climb trees and walk along cliff edges. Now he was with Douglas for long-haul drives in big trucks, daring Douglas to drive faster and go further. Christopher is just one of the voices that Douglas hears. Christopher is friendly compared to Margaret.

Douglas Holmes:

Margaret’s voice, actually, it came on after my wife died. In 1980, my first wife passed away with an embolism. We’d been married for a week off 7 years. The reason I call it Margaret was because it reminds me of my first mother-in-law. I lived in a small town and people do gossip. People would comment on my washing hanging out. Instead of actually coming and giving you some support around how you actually double them over so they don’t go all wonky. There was that stuff there, and of course when you’ve got that going on all the time, you can’t sleep, you get irritable-

Ninah Kopel:

She would criticise you for those things as well?

Douglas Holmes:

Yeah. Yeah. It eats away at your self-confidence basically over time. I don’t have a good relationship with my in-laws. It’s been very, very difficult to some of the reconciliation through that process, because they felt that I contributed to Chris’s death. What happened was she was 24, we got married when we were 17, had two kids. Matthew’s 42 and Amanda is 38. Got three beautiful grandkids. One of the consequences of what’s happened, well I’m estranged from my children. That’s through some of the behaviour that goes on with what you’re doing. I won’t go into that.

Ninah Kopel:

At this point, Douglas stops talking, and I can see he’s uncomfortable. I’ve promised him I won’t push him to talk about anything he doesn’t want to, so we move on.

The way Douglas explained this to me is like there’s this cast of characters in his head. There’s Christopher, daring, adventure-hungry, a leprechaun-like friend. There’s Margaret, like a crow. Pecking away at his self-worth and confidence. There’s also a third voice, which isn’t so much a voice as a wall of sound.

Douglas Holmes:

The only way I can describe it, it’s like when you’re at the football, and your team’s just about to score, it’s like it comes in and moves away and it’s all the time there. Some people think it’s tinnitus, but for me, it surrounds; there’s a gargoyle of groups.

Ninah Kopel:

That was Douglas’s normal for 42 years until he reached his limit. He was part of the construction crew building the Sydney Harbour Tunnel, and something about the heat and being underground led him to become psychotic and full of fear. He stopped working but became depressed, until eventually he went to a GP. He referred him to a mental health team, and that’s where he finally got the help he needed.

Douglas Holmes:

When I took the medication, I asked a couple of questions, how much do I need, and they said, “We don’t know, we just started you on a dose.” “How long will I be taking it for?” “For the rest of your life.” I thought, “That’s pretty hopeful, you know.” When I did take the medication, the change for me was that my mind actually went still, and what I now understand to be voices went away. It was just like, my mind was actually like looking out at a pond. You’ve seen the ponds when there’s no wind on them? Yeah. 42, and that had been something I’d been looking for a long time.

Ninah Kopel:

You’re still on that medication?

Douglas Holmes:

No, actually I went off the medication in 2000, as I done more research into it, the reason that, I was actually on lithium, I was on 1500 mils of lithium. The reason they actually want you to go on lithium is if you’re on it it’s very difficult to have a manic episode. It’s actually like walking in molasses. It was like that all the time. I found it very difficult to stay motivated. It’d really dulled down my thinking and I thought, I don’t really want to live like that for the rest of my life.

Ninah Kopel:

Douglas consulted his medical team and considered the risks. If he went off the lithium, there was a chance it wouldn’t work for him again. That the voices would come back and he might not be able to get rid of them. He had a strong support system and after a long period of consideration, he made his decision.

Fiona Orr:

Voices are something that many people live with. Regardless of whether they have a mental illness or not. If they do have a mental illness, conventional medical treatment, medications don’t necessarily remove voices. Many people have to learn to live with them.

Ninah Kopel:

This is Fiona Orr. She’s a lecturer in mental health nursing in the faculty of health in UTS. She has numerous years of experience as a registered nurse. She’s also doing her PhD on how to train nursing students in developing empathy for people who hear voices.

Fiona Orr:

I think if nurses don’t have that kind of knowledge, then they’ll be fairly limited in the ways they can engage and develop rapport and work with people who have this experience.

Ninah Kopel:

Through your research, you’ve been giving nursing students these experiences. You’ve been plugging them in and giving them voices in their heads. How have they been responding to that?

Fiona Orr:

Yes, so since 2008, we’ve used MP3 players with recordings of simulated voices, sounds. These were all recorded by voice hearers themselves. The people who’ve heard voices. They originated in the States, and I need to give credit there to Patricia Deegan from the U.S. who developed this package. They recorded the kinds of things they heard. Sometimes those things may not sound like an actual human voice. Some people would describe some of the voices they hear as robotic or automated. They might speak quickly, slowly, they may be whispers. They often, and particularly this program focuses on distressing voices-

Ninah Kopel:

How long have you listened to that simulation before? What was your experience of plugging that in?

Fiona Orr:

Yes, yes, so all the staff obviously were trained and Kevin Kelleher and myself being the initial staff went through the training with the consumer consultants, and it was really eye-opening. You hear the voices quite loudly, and you’re encouraged to have the volume up quite loud, because they’re usually intrusive, so they need to be loud. There’s a variety of things that they say. They go quiet, and then you’re anticipating, are they coming next, what will they say?

Ninah Kopel:

What kind of things were they saying?

Fiona Orr:

They might be quite derogatory things. They’ll swear. I might not repeat that here, but they certainly swear, call people, you know maybe you’re a pig, you stink, you’re no good. They might be making sounds, they’d be scratching, and whooshing sounds, and chu-chu-chu-chu-chu-chu type of sounds. chu-chu-chu-chu-chu-chu. It’s quite frightening, actually. Yes, you could turn the volume down if it was really too distressing. Yes, you could turn it off if it became way too distressing. For most of us, the sense was try and suspend disbelief, which meant really imagine for the next 45 minutes this is happening to you and to go with it. To really try and appreciate what it might be like for someone who can’t turn it off in 45 minutes.

Ninah Kopel:

Were you able to do normal day-to-day things to do, you know, read that report, or go and buy that item?

Fiona Orr:

We played a role where the consumers acted as health professionals and did a mental state assessment on us as if we were the consumers. Trying to remember numbers and reciting them backwards. I found that more difficult. Going to speak to people in the cafeteria and order food, when at that very point the voice might scream at you or tell you’re no good and shut up. Somebody on the other side of the counter is saying, “Sorry what did you want?” “The latte, what did you say you wanted?” Or them calling your name when the coffee was ready, and you’re not actually registering, “Oh, they talking to me, in fact,” because you’re too distracted with what you’re hearing in your ears, which feels like it’s in your head.

Ninah Kopel:

The study had close to 400 students in it, and Fiona found it did increase students’ empathy.

Fiona Orr:

They felt it. They felt the anguish, the angst. The fear. They felt a range of emotions. It made it real.

Ninah Kopel:

This experience wasn’t just real because the students understood what goes on in Douglas’s head. It’s real because Douglas himself was involved in the process. He was one of the consumer participants that trained Fiona in the simulation technology. Douglas still hears voices, but he’s able to do this type of work through a strategy he’s developed: negotiation.

Douglas Holmes:

I’d say to Christopher, “Look you need to give us a break, I really got some important stuff to do.” He’s actually behaving himself while this is on.

Ninah Kopel:

He’s not talking now?

Douglas Holmes:

No, he’s not talking. He’s actually like intently listening, because I’m giving him a little bit of a prize. This is the agreement that we’ve actually got. What would often happen is, he will start to interrupt. Margaret, though, she’s giving a bit of, she’s like a crow in the background.

Ninah Kopel:

She wants some attention too?

Douglas Holmes:

Well, she doesn’t like me talking about this stuff, because there’s still a lot of stigma and discrimination out there for people a) that actually have mental illness, and b) that hear voices.

Ninah Kopel:

The thing that Fiona is doing with the simulation technology, to help people understand the voices, how much do you think that’s going to change the way people interact with people who do hear voices.

Douglas Holmes:

Quite a lot, actually. I witness some of the students that they train at St. Vincent’s. We have a number of them actually come through, and people are becoming much more accepting of different types of experiences. Instead of trying to switch it off, part of the voice profiling that you learn is about you making some sense of what these things mean to you, and trying to incorporate those into the way you work.

Ninah Kopel:

This voice profiling is something Douglas learned after his bipolar affective diagnosis. He was able to develop strategies to deal with the voices which allows him to work as the Chairperson of the Hearing Voices Network in New South Wales, and at St. Vincent’s hospital as a consumer participant, where he shares his experiences of living with voices.

Douglas Holmes:

Just getting people accepting that some of us actually do see visions and hear voices And while they get us in to trouble, they can also at times be quite helpful.

Ninah Kopel:

When do they help?

Douglas Holmes:

When do they help? You’re never alone, basically. I could be out on a desert island and I would survive. It’s quite exciting when you actually get on a roll with Christopher. That’s the best way I can describe it.

Ellen Leabeater:

Douglas Holmes, Chairperson of the Hearing Voices Network in New South Wales, ending that report by Ninah Kopel. If that story had triggered any issues with you, please call lifeline on 13-11-14.

Voiceover:

Think Health. On 2SER 107.3

Ellen Leabeater:

Well, you might be surprised to hear that over 70% of Australians use some form of complementary or alternative medicine. Complementary and alternative medicine sits outside conventional health care and includes things like acupuncture, multivitamins, massage therapy, yoga, and chiropractics. New research shows that women in particular are high users of complementary and alternative medicine, as are people with chronic illnesses.

Chris Zaslawski:

These are acupuncture needles. They’re fine stainless steel and disposable use. They usually come with a little tube, which aids insertion of the needle.

Ellen Leabeater:

It’s a busy morning in a Chinese medicine clinic in Sydney’s CBD. This particular clinic is buzzing with student interns attending to patients behind curtains. Despite the hubbub, relaxing music fills the room.

Chris is currently showing me the needles they use in acupuncture.

Chris Zaslawski:

They’re all different sizes as you can see from the very small needles, we’ve run out of those, to very long, longer style needles.

Ellen Leabeater:

You use different needles for different things?

Chris Zaslawski:

For different areas, yeah. Different areas, you got different depths. I’ll just come in here and I’ll show you how one goes in. This is one-handed method. I didn’t feel that, and I put I it in myself. There was nothing I felt when I put it in because the needles are so fine they push things aside as they move into the skin.

Ellen Leabeater:

Chris Zaslawski, is an Associate Professor at UTS, in the Faculty of Science.

Chris Zaslawski:

I team leader of the Chinese Medicine Team, which teaches and does research and also clinical practice here at UTS.

Ellen Leabeater:

How did you get involved in Chinese medicine?

Chris Zaslawski:

A long time ago, I’ve been doing it for 36 years now, but originally as a young man, someone suggested to me, why don’t you try acupuncture. I did and I was fascinated with it, and went and studied a program, a very short program, at the time, and of course have continued on and done more education in other areas as well.

Ellen Leabeater:

Chinese medicine has three main streams. Acupuncture, herbal medicine and Chinese massage. Chris says they see over 7,500 people a year, the majority of whom are women.

Chris Zaslawski:

I think the majority would be females. We haven’t actually run an evaluation of that. We do collect that type of information at the computer database at the front, but just anecdotally, I’d say probably 2 thirds women, 1 third men.

Ellen Leabeater:

Why is that?

Chris Zaslawski:

Look, there’s probably sociological and cultural reasons why. I think females are more attentive to themselves and to their body, and to their health, whereas I think men tend to ignore things, or they will get to a point where they will go and get either complementary medicine, or in general orthodox biomedicine, but I think in general, men aren’t as attentive to their own health.

Ellen Leabeater:

Chris’s anecdotal evidence is backed up by research. Women are more likely to use complementary and alternative medicine. Amie Steel is a post-doctoral research fellow from the Australian Research Centre in Complementary and Integrative Medicine at the University of Technology Sydney. Amie is also the Associate Director of Research and Endeavour College of Natural Health.

Amie Steel:

Women in Australia are more likely, and that’s consistent around the world as well, and I think that’s because women are more engaged with actually looking after themselves. Using complementary medicine is linked to health-care motivation. There’s a lot of self-responsibility in health care that goes with using complementary medicines.

Ellen Leabeater:

Amie has recently completed a review looking at the predictors and characteristics of Australians who use complementary or alternative medicine, also known as CAM. In addition to finding that women are more likely to use things like acupuncture and yoga, she also found that CAM users are more likely to be well educated.

Amie Steel:

People who are higher educated are more likely to use complementary medicine, and that’s even if you take into account income. The relationship between complementary medicine use and education has been linked a little bit to health literacy, which means people who are more educated are more likely to be reading information and getting their own information, rather than relying solely on what an expert such as a medical doctor might be telling them. They’re taking some of that on themselves and they’ve got the confidence to engage with all the other information that’s out there, and make their own decisions about what they use.

Ellen Leabeater:

It kind seems a bit counter-intuitive to me because I think if you are, some of the complementary medicine isn’t backed up by any evidence, and if you’re of a higher education, you can make that link.

Amie Steel:

Yes, I guess part of it though is, people who are more educated are able to engage with the fact that there is good evidence for some complementary medicine in some conditions, so they’re able to navigate through the information that’s out there and make better decisions.

Ellen Leabeater:

It’s not as if people are throwing conventional medicine out the window altogether. People who use complementary medicine see it as a supplement to conventional health care.

Amie Steel:

One of the things that I think is important, out of that is sometimes people are using complementary medicine to address a specific health condition. Other times they’re using it as an adjudicative treatment to offset maybe side effects or symptoms that are not able to be well treated from conventional medicine, and rather than trying to treat the condition specifically with complementary medicine, it’s just working alongside the conventional treatments they’re already receiving to make it more effective or to reduce the amount of conventional healthcare that they are accessing. If they don’t want to take as many pain medications drugs, then they will use complementary medicine just to reduce it. They’re to trying to reduce their pain, they’re just trying to reduce the amount of conventional drugs they need to get by.

Ellen Leabeater:

One woman who ticks all these boxes is Nicole Brown. Nicole is a 46 year-old early childhood teacher, who is an enthusiastic advocate for chiropractics.

Nicole Brown:

I use chiropractics mainly, and I go to the chiropractor once a month, and she also uses cupping as another technique and also an emotional technique, when we’re there as well, if that’s needed.

Ellen Leabeater:

Nicole and her family have been seeing this chiropractor for the last two years.

Nicole Brown:

I find it keeps my body in alignment, which to me, and my family, because my family all go to her to as well, so my husband and my two daughters. I find that it keeps my body healthy. We don’t tend to get as sick as much.

Ellen Leabeater:

When you say that she adjusts you every month, what exactly is she doing?

Nicole Brown:

She’s putting your pelvis back into place, your neck, and even things like your legs. If you feel you’re a bit out of alignment, if you do a job where you’re sitting down a lot, so you’re in the, same position for a long time, and you end up with often a sore neck and a sore back because of that because it’s in a stationery position of longer period of time, so she puts all your bones back into the right place where they should be sitting.

Ellen Leabeater:

Nicole says she has never looked into the science behind chiropractics.

Nicole Brown:

No, not a lot, I think just from what she says and just the information that’s on display in her surgery, or her office, I assume. It tends to make sense to me. I haven’t looked into it as in great detail but just the information that she gives you because she will often, when we started going there, she would give you information from research that, depending on what she was doing in terms of cupping, or whether it was the emotional technique that she was using, and this is the benefits of it and this is why.

Just through her information that she gives us, that’s probably where I’ve got probably a bit more faith in that more than taking medication because I used to get a lot of headaches. Sorry, I shouldn’t say a lot of headaches, but I would get headaches, like if you’re stressed or if you’ve got lots of work to do and reporting and things like that to do, your stress levels are a bit higher, so it would cause headaches. I tend not to get headaches, I ultimately get them probably once every six months now, whereas I would get them much more regularly before I went to the chiropractor.

Ellen Leabeater:

Nicole says she has told her GP about seeing a chiropractor. Of concern for many researchers is how complementary medicine is used in conjunction with chronic disease. CAM use is higher in this portion of the population who use complementary medicine to manage diseases like arthritis, asthma, cancer, and diabetes. The concerns stems from unregulated CAM practitioners or practitioners that are using methods which could endanger someone’s health.

Amie Steel:

In the example of cancer, if someone is actually using complementary medicine for cancer, I think the first thing we need to do is understand exactly what it is that the practitioners are doing, and how practitioners see themselves as part of the cancer care team. Whether or not they see themselves as replacing an oncologist or working alongside the oncologist. I think that’s an important question to clarify to begin with. Also in terms of finding out exactly what they’re doing, so you can identify whether or not there’s research evidence currently to support it, and if not what research needs to be done to clarify whether or not it’s working and it’s safe.

Ellen Leabeater:

Asthma, cancer, diabetes, and obesity. These are all examples of chronic conditions that have been identified by the Australian government as national health priority areas. These are the areas the government has decided to focus on for research and prevention, and areas that Amie says also have high rates of CAM use.

Amie Steel:

If they actually want to address these national health priority areas and patients are using complementary medicine for these health priority areas, and these are things like muscular skeletal condition, cancer, obesity, those kind of things. If they’re actually using them in those situations, then I think the responsibility is with the government is to put a bit more funding into finding out what exactly they’re using, and whether or not it’s effective and safe. I think that’s probably the biggest next step is for policy-makers to realize that complementary medicine use in Australia is potentially addressing a health service need, at best, or putting a major section of the population at risk, at worse.

Ellen Leabeater:

Amie Steel speaking there about the need for more research into complementary medicine use. It is still unclear whether alternative medicine use is higher in chronic disease groups because it’s working or if these people are just more willing to search for an answer and try un-traditional methods in order to manage their lifelong illnesses.

If you would like to find out more about that story, visit 2ser.com/thinkhealth. You can also find us on your favourite podcast app, just search Think Health. This show is produced with the support of the University of Technology Sydney, Faculty of Health. If today’s program has raised any concerns, go and see your GP. I’m Ellen Leabeater, thanks for your company.

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